Words of Joy

Update

2009-02-10T15:11:00.002-05:00

I have had several requests to update the blog regarding Joy and although I am reluctant to do so for the same reasons, I will do so and try to be brief.

She has been in the hospital locally several times since I last wrote and has had surgeries, numerous tests and procedures ALL to no avail.

Severe abdominal / stomach pain continues along with constant nausea and vomiting or dry heaves after eating ANYTHING and any amount.

She awaits a nerve block procedure to diagnose and possibly address the pain issue but it is difficult to be optimistic.

Joy said that will be her last procedure / test / surgery and she has stopped her daily vitals monitoring and spirometry testing. I don't know how this will resolve, but I can't blame her and fortunately she is mentally alert enough to make those decisions. Our next SCHEDULED trip to Duke is in June but several friends have taken that as a positive sign of progress. When we last visited Duke, Joy insisted that she was not coming back for at least six months regardless, so it was her decision not theirs. Time will tell if we return at all. We will see.

Good News, Bad News and Terrible News

2008-11-13T21:01:00.002-05:00

I am becoming tired of writing this blog because there is never much of anything positive to report and I do not see any change forthcoming to alter that view.

However, Kayce is now home from the hospital after being treated for Pancreatitis. She was one sick young women and of course once again, we were not here for her. She is doing fine and catching up on finals and homework.

While we were still in NC, our good friend Doug Hill (wife Cookie) suffered a massive heart attack just after a brief visit to the Center For Living Facility. Doug's transplant was Sept. 2006 and hasn't had a good day since. I talked to Cookie about an hour after 911 took him to the ER and understood his condition to be serious. I immediately went to the ER and was met by a social worker that told me his condition was extremely grave. I stayed with her for about four hours and went back the next day but Doug's condition remained the same. I have mentioned in this blog previously about Doug and Cookie and value their friendship tremendously. I had a long chat with Doug when they invited me over for dinner while Joy was in the hospital. He was showing signs of improvement. But Doug never regained consciousness.

Doug has died. He too, had IPF like Joy and has been sick for about four years the worst of which was the last two. There has to be a special place for the likes of Doug and Cookie Hill.

Joy had a miserable trip back. We were home for about 2 hours when I took Joy to her local doctor to examine her incision area which was inflamed and painful. The doctor sent her immediately to ER and she now remains in 100% isolation suspected of having the MRSA infection. Her compromised immune system is hampering their treatment options. They opened her incision and installed a vacuum pump to aid in the healing process. They plan to give her two units of blood tonight.

She has been searching for a good reason to cancel the December Duke appointments with the surgeon, transplant clinic, endocrinologist and treatment for her back. She may have just found one.

When Will It Ever End

2008-11-04T14:52:00.002-05:00

As if we didn't have enough concerns, Cathy had to take Kayce to the emergency room for severe abdominal pain and nausea and she was subsequently transferred by ambulance to another hospital more suitable for diagnosis and treatment for teens. Some improvement noted but definate diagnosis TBD. We feel so bad to be so far away but Cathy is keeping us updated frequently.

Joy was discharged yesterday so she is trying to recover at our hotel apartment sufficient to make the 893 mile drive home. Other than getting staples removed in two weeks and blood labs Friday she has clinic appointments later this month and several in early December but at this point, she is tired of being stuck, poked, cut and dealing with the multitude of doctors so those trips and appointments are in jeopardy. I can't blame her.

When will it ever end?

Surgery Update (Edited update Friday PM)

2008-10-31T09:55:00.003-04:00

Joy continues to struggle (showing some improvement). We almost lost her Wednesday night (Doctors words, not mine).

She had AFIB yesterday morning (131-152 heart rate) but a combination of meds brought heart rate back to normal. Awaiting results of several tests that she had early this morning (between midnight and 2 AM) checking for PE (blood clots) which "may" have triggered AFIB. (Tests were negative and no obvious blood clots). Mobility is crucial and pain issues plus the AFIB have limited her desire (marked improvement today with walking). A little crackle in her lungs is present and should go away with mobility as well as O2 decline ( showing some improvement). She has been terribly disoriented (medicines) but improved sufficient for me to leave about 3AM today (showing improvement today). Very, very weak. Will see what tomorrow brings.

MRI did not show any new fractures but reveals several protruding disks which may account for her back pain. (Specialist has isolated area of concern and may be able to resolve with epidural at a future date when pain from stomach surgery has subsided).

She is on clear diet (now full liquid) and finally taking some (all) meds orally. Nausea is a constant but dry heaves have not returned but she is eating very little so we will wait and see.

Surgery Complete

2008-10-28T09:24:00.002-04:00

The four (4) hour plus surgery is complete.

She was in ICU after surgery for about five (5) hours so I did not see her until shortly before midnight last night and stayed for a brief moment and came back to rest. Very long day.

She was very uncomfortable and in a lot of pain as you would expect after a lengthy stomach area surgery. Surgery went OK but no way of knowing for several days if this resolved this issue or not. Somewhat alert but "in and out" of it.

Back pain will still be an issue and hopefully I can learn today if the recent MRI showed another fracture.

Later....................WB

Duke Visit Update

2008-10-24T17:04:00.002-04:00

Results of today's MRI have not been released so we do not know if Joy has another fracture or not. She is still betting that she has another one based upon pain level.

The Transplant Team physician feels they have exhausted all means to treat her stomach issues with medicines and surgery remains the best option. They deferred Joy to the stomach surgeon and we met with him yesterday. He really "pushed some buttons" and was able to schedule the stomach reconstruction surgery for this coming Monday afternoon. It will require several days of hospitalization and offers a 50/50 chance of successfully correcting the nausea / vomiting issues. Several transplant patients have required this surgery for similar issues so the situation is not unique to Joy. The exact reasons why these patients have motility issues are not clear but the theory is that it is from trauma to the muscles especially in the esophagus and stomach.

Their are seven transplant patients (or caregivers) at our hotel and some of the stories are pretty unfortunate. One women had severe circulation issues and has had a foot amputated and several toes from the other and she just learned that see is facing more amputation. Another man is still in the hospital six months after transplant fighting severe infections. Another 35 year old did pretty good and going home after only three months here. Then we just learned one of our other friends has Stage 3 rejection and returning here for treatment. A very, very tough surgery but each of them are glad to be alive.

And, I was successful in obtaining tickets (free for the women's) to a sold out Duke men's and women's basketball game this weekend so that will fill both afternoons.

So a lot of action from Durham and hopefully we are making progress. We will still have to return in early December for several clinic appointments.

Remember to vote. Early and often.

Stay tuned.

Very Brief Update

2008-10-14T20:18:00.002-04:00

Back pain intensifies with probable new compression fracture. Nausea / vomiting a daily routine. Very limited activity and outings limited to necessities. Recent eye exam revealed cataract surgery necessary to correct vision therefore the Sarah Palin style glasses will do her no good, even if Sarah wins the election.

But, we're off to our second home AGAIN this weekend and we will see what gems of treatment and encouragement they can muster this time. Then, we are already scheduled for early December excursion. Ain't gonna go back in November no matter what!

Home Again & again & again & again & again

2008-09-29T14:55:00.002-04:00

We made it home safe and sound Sunday night and now trying to recover.

It was a very uncomfortable trip for Joy and I suspect it will take her days to bounce back. Back pain continues to be an issue and she feels she may have another fracture. Maybe in a few days "travel pain" will subside and she will know for sure. Mild nausea continues but the daily vomiting and violent dry heaves have subsided.

We are trying to negotiate her next scheduled visit in October to a date that will be better suitable to our schedule.

So she comes home a little better than when we went down but, I am beginning to wonder if............................

Duke Update, Again

2008-09-26T12:12:00.002-04:00

Surgery is complete, nausea issue addressed and Joy has been discharged so we are preparing for our return trip home tomorrow.

Intense back pain has been resolved for the moment and current back pain probably residual effects of the surgery itself. All the attending physicians have indicated she has an extremely high probability of reoccuring fractures despite any/all precautions.

Nausea issue improved slightly but doctors feel this will require a "long haul" type resolution because several factors are involved in the root cause. We will see how she responds to the added motility medicine over the next month until we return to Duke for follow-up in a month.

The doctors did a lot during her week's stay and she came out better than when she went in but still has plenty of opportunity for progress.

Surgery at Duke Scheduled

2008-09-22T19:59:00.002-04:00

The MRI conducted late Saturday revealed another compression fracture. We knew of course, that she had the one that was surgically repaired in Illinois and we knew that she had the second fracture that the doctor was waiting to see if it would heal on its own. Not only did it not heal but Duke discovered another fracture. So after discussing scheduling options with the doctors and "squeezing" them just a little, they have scheduled her for surgery here on Wednesday. We are thrilled that they will be able to do it here. To many things can go wrong with transplant patients in post surgeries and if complications arise, we feel she will be better served at Duke.

Today she had an endoscopy which revealed no infection or complications other than seeing first hand earlier suspicions that the Nissen was to tight. They loosened or increased the opening about 1/4 inch so we are hoping for some resolution to the nausea / vomiting issues. Pain and nausea are still under control with the help of IVs for each.

Lab analysis from bronc last Thursday has not revealed any infection or rejection in her lungs!

History has not necessarily been kind to her so we proceed with cautious optimism and hopeful these procedures will resolve her current issues. They cannot prevent further fractures and in fact indicate more fractures are likely. Ouch!

September Duke Trip Report

2008-09-19T20:22:00.002-04:00

The drive to Durham was uneventful and Joy tolerated the trip reasonably well. She had a day to rest up prior to clinic appointments and procedures and planned to go shopping but was in to much pain so she rested until dinner. Despite my encouragement to cancel dinner plans, she forged ahead with a birthday meal with family and friends. We had a good time albeit brief and she really paid for it in pain and discomfort.

Although lab analysis results from the bronc are not back, the doctor did not find anything of concern. Other tests and procedures were within acceptable limits.

The nausea and pain concerned the Transplant Team physician and she admitted Joy to the hospital immediately. Nausea / pain was at its worst and Joy was very, very sick. Throughout the day today (Friday) she has had six different IVs, several x-rays, stomach CT Scan and Team plans an endoscopy and MRI on her back and whatever else tests they deem necessary. Nausea and pain finally managed by mid day today. Team doctor heard crackling noise in her lungs and immediately ordered three different antibiotic IVs. Fever of 102 coupled with the crackling indicated some type of infection.

So the plan is to address the stomach issues, the back pain, treat and monitor the infection and complete necessary tests over the next few days. Team doctor indicated as a last resort if all tests were inconclusive, they would "loosen" the Nissen which would allow her food to empty into the stomach on a more timely basis however, it would increase the risk of aspirating acid reflux, which of course is why the Nissen was done.

We are praying for a resolution to these issues otherwise, it will be difficult to be optimistic toward seeing her quality of life improve. Most of the things she enjoys has otherwise been stripped from her to this point.

Labor Day Update

2008-09-01T15:19:00.002-04:00

The past few days and weeks have been a little like the character in the movie "Groundhog Day". Very repetitive. Gets up, throws up, takes a lot of meds and narcotics, back to bed for rest (doctors request) gets up for a couple hours in the evening and back to bed. Back brace and narcotics have seemed to help back pain slightly but we don't really know if that means the fracture is healing or if the pain meds are disguising the problem.

Regardless, conventional wisdom tells us that we need to make the mid September Duke clinic appointments / procedures soooooooooooooooooo, somehow we will get her there. Blood tests have indicated a need to increase one of her anti-rejection meds several times so we do not know if the pain meds are impacting their effectiveness or if she has some rejection issues which would be the major reason for our visit.

So in a couple weeks, we load the family truckster and head for North Carolina. I am sure she will enjoy the trip!

Home Sweet Home

2008-08-20T15:25:00.002-04:00

Although Joy was discharged, pain continues and intensity better controlled but at the cost of increased nausea / discomfort.

She had two options: 1) Undergo another spine surgery NOW or 2) utilize the back brace and continue with pain management for a couple weeks to see if fracture heals by itself. She is giving number 2 a try.

September trip to Duke is in question. This appointment is critical but could be rescheduled for the following month but tremendous risk is involved should she not be able to go in October. The rejection / infection has to be closely monitored since it is possible her body will not display any apparent symptoms. Bronch and biopsy are the only way to diagnose.

Decisions, decisions, decisions.

Sunday Night Update

2008-08-17T20:38:00.002-04:00

Doctors are trying to avoid another spinal surgery by using a back brace device, lots of rest and limited activity coupled with still rather strong narcotic pain meds. As we understand, the compression fractures are extremely painful and do not go away quickly.

So the PLAN is to possibly discharge her tomorrow and revisit the doctor in a couple weeks. The doctor will then do another MRI and determine then if the bone is healing and how she is managing the pain. That visit SHOULD decide whether spine surgery is required.

Is our Duke trip mid-September in jeopardy????

Another Fracture

2008-08-15T00:51:00.001-04:00

Joy learned late this afternoon that she has another compression fracture in her spine at T11 which is just above previous fracture at T12.

Remedy? Hopefully will learn something tomorrow.

Number Nine

2008-08-13T11:10:00.002-04:00

For the ninth time in a little over a year, Joy is back in the hospital, this time for the intense back pain issues again. The IV injections of narcotics helped last night but she can't stay on those addictive and potentially harmful drugs forever.

If these doctors are unable to determine a viable solution, then we will head south. I guess we are so accustomed to speedy resolution, minimal delays in testing procedures and efficient scheduling for doctor appointments that we are expecting to much. But then again, I don't think so. Granted, Joy has had numerous post-transplant issues like so many others that we know but it was nothing Duke had done wrong, it was merely these patients bodies responding differently to the tremendous side effects of lung transplantation. But in the final analysis, we are spoiled not to have the diagnostics and world class doctors at our immediate disposal.

But.............................we will see.

Update

2008-08-11T12:52:00.002-04:00

Intense backpain continues with minimal relief despite continued and additional narcotic medicatiions. Bone density scan did not reveal a specific new fracture since surgery for the compression fracture. She continues bedrest and virtually limited activity. Follow up doctor appointment later this week.

Where do we go from here????????????????????????????????

Latest Update

2008-07-31T15:47:00.002-04:00

Intense back pain continues with minimal relief despite large doses of narcotics. Doctor suspicions a rib fracture although recent MRI is inconclusive. Further testing has been scheduled for Monday. Pain has been severe enough to essentially confine her to the house and bedrest.

Everything About the Same

2008-07-20T16:46:00.002-04:00

Not much change since previous blog. Joy has not been able to leave the house, still has nausea / vomiting every day and considerable pain although it has improved slightly.

Nissen or transplant anyone?

Home Again & again & again & again & again

2008-07-15T20:29:00.002-04:00

For the eighth time in a year, Joy was released from the hospital.

She is still experiencing considerable pain and more nausea / vomiting than usual. It is probably wishful thinking to believe either will subside.

So now she recouperates prior to heading back to Duke in mid September. But hey........football will be starting there with a new inspired coach so will see about scheduling her appointments around a game. Actually the appointments are already set and I will have to work those dates around the football game schedule.

Go Blue Devils.

Now what is next?

Post Surgery Update

2008-07-13T12:40:00.002-04:00

According to the spine surgeon, surgery went according to plan.

Joy however, is experiencing an extreme amount of pain, walking with walker assistance, using O2 since level has dropped significantly, kidney function improving but supported with fast IV rate of fluids and of course, not eating or drinking to their desires. What else is new?

Hopefully today will show some progress but we have learned to count on nothing. Nothing.

May be released Monday but appears she needs a lot of progress in the interim.

Surgery

2008-07-10T22:55:00.001-04:00

Spine surgery scheduled for 12:30 tomorrow.

Kidneys showing signs of shutting down but last test showed "some" improvement.

Stay tuned........................

Remember "The Dime" ????

2008-07-08T10:30:00.002-04:00

It now appears that Joy sitting in the chair for 4 1/2 hours while getting the IVIG infusion was the root of her back pain which I mentioned in an earlier blog.

Now, another turn on the dime.

So after about 9 days of unable to get out of bed and still in excruciating pain, Joy was admitting to the hospital only to learn that she has a compression fracture in her first lumbar in the spine. We await discussion regarding solution (s). Pain is being managed by IV.

We know for absolute certainty that this thing is an ever evolving process but we just do not know what will be next. This one was somewhat of a surprise although we were aware that the combination of age, radiation and drugs create brittle bones. Previous bone density scans have verified this in pre-transplant testing.

What next?

Anniversary

2008-07-01T09:56:00.002-04:00

Today marks Joy's first year anniversary with her new lungs.

However, we are not celebrating in a traditional sense. No parades, marching bands, music, cheers or parties. This is also the first anniversary for the surviving family that lost the life of someone and that has to be tough for them. Joy has experienced a living hell this past year and still unwilling to concede that it was worth it. I can't blame her and each time we visit Duke and talk with friends and other transplant patients, we have a pretty good idea what is ahead and we don't like that either.

She was very sick during our return trip home and in a lot of pain so right now she feels pretty rough.

We just hope for the day that she feels pretty decent and begins to feel that the process is worth it. But for now, one day at a time.

Overall, A Good Trip

2008-06-27T11:23:00.002-04:00

The biopsy results are in and the IVIG is complete so now we focus on wrapping up our final day in Durham and packing the truckster for the journey home tomorrow.

The initial results from the biopsy showed no signs of rejection. A big relief! The IVIG so far, has not produced expected flu like symptoms. That's OK with her.

Overall results of this visit:

No evidence of rejection at this time (lab still following sample)
IVIG complete without complications thus far
Reduction in mg. doses of two anti-rejection meds
Stopping the insulin injections (providing routine checking indicates reasonable range)
Removed the feeding tube and must now rely 100% on nutritious diet--more than just chocolate
Blood tests catagories within reasonable ranges
Joy must write a letter to transplant team to request donor information
Three month return in September--"3 months---what will we do with our time" ????

NOW, if she only felt better!

Wizards deliver, so far........

2008-06-24T18:52:00.002-04:00

Monday's clinic visit resulted in stopping insulin injections providing of course, her blood levels remain within an acceptable range. Her Prednisone med was cut in half and the doctor said she should stop the can feeding and felt the tube should be removed. Chest x-ray was satisfactory and spirometry numbers were lower than last visit (she checks this daily at home) which may have worsened due to stomach bloating and therefore pushing on her lungs and diaphragm. It could be due to rejection and we anxiously await the biopsy results.

Tuesdays clinic was also good since the doctor removed her feeding tube and Joy could not be more pleased. She was ready to do battle but that was not needed. Next visit in six months. Now she must eat smart. Small slow meals of nourishing foods or the tube comes back.

Afternoon bronc went well and doctor said lungs looked pretty good. Biopsy has produced quite a bit of "coughing up blood" but this is not totally uncommon.

Now, we wait for (1) blood test results possibly tomorrow and (2) biopsy results possibly Thursday. We also await (3) scheduling of another IVIG infusion. As you may recall, this is the $13,000.00 Intravenous Immune Globulin infusion and is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. This will be her third infusion.

Stay tuned.

Wizards of Durham

2008-06-17T21:41:00.002-04:00

No, it is not another Harry Potter movie, the Wizards of Durham are the doctors that we will look to next week regarding rejection, donor information and stomach issues and probably other things that they will find that will come out of left field. "The element of surprise"!

The bags are packed, the truckster loaded with gas and luggage so Joy, Kayce and Wayne will head out tomorrow for another pilgrimage to DUMC.

Joy's ONE year anniversary will be July 1st and while we are grateful that she is kinda hanging in there, her donors family will have their 1st anniversary which undoubtedly is another step in their healing process of losing a loved one. We hope to find out some information on Joy's donor now that the one year has elapsed.

Hopefully, I will have some good news to report by mid week, next week so until then,

Happy Trails to You.

Family Tradition (Updated 6/3/2008)

2008-05-30T14:46:00.004-04:00

It has been a long standing Memorial day tradition for Joy's brother Fred and his wife Shirley plus their children Laraine, Steve, Danny and Chris to visit Montpelier, Ohio to decorate the graves of family and friends. Joy and I were not able to go last year due to her illness and scheduling at Duke but I don't think anything was going to stop her this year. Fred, Shirley, Steve and wife Trina and Danny drove over from Pennsylvania and Joy, Kayce and I convened at the family compound for a weekend at Hamilton Lake, Indiana. We were also able to visit with my mother, brother Don and some dear high school friends. Sharon has been a real trooper with her communications and thoughtfulness. Trina and Wayne talked photography and Joy and Fred talked illnesses and how to survive the rat race. Oh yah, Steve cooked the steaks!

The drive coupled with the activity and continued pain and soreness in Joy's stomach kept her down for the best part of one day but she recovered enough to battle it out. Continued weight gain meets with the doctors approval but not from Joy's vanity perspective. She feels she worked so hard to lose a lot of weight and now to gain it back a "can" at a time is ridiculous. But, the problem is, she cannot eat enough without the cans to sustain, so we wait to see. The "stomach and eating" is still an unresolved issue. We will be leaving for Duke around June 19 th for a series of tests and appointments and hoping for some resolve. Her daily spirometry (breathing) testing continue to show declining numbers which "may" be indicative of ongoing or increasing rejection.

Thanks to everyone that continue their interest in her struggle to regain some quality of life and I will do my best to keep you posted.

Just as our family did, so did the Kennedy family by looking far and wide to find the best solution and treatment for Ted Kennedy's medical condition. Apparently, they found what we found and that was selecting Duke University Medical Center as the best place in the world that offered the best chance for survival. We wish Ted and his family the very best as well.

Update

2008-05-14T21:53:00.001-04:00

Well, we were able to celebrate our first holiday at home in over a year with Mothers Day and finally able to attend Kayce's last orchestra concert of the year, both crowning achievements. I know we are only half way through May, but it appears that we will miss a return to Duke this month and prepare for the late June return. Joy's stomach surgeon would like to see her sooner but she remains adamant that she will not return in May. Period. Her stomach pain remains a relative constant with occasional sharp and stabbing pains and she is trying to avoid another surgery if she can with hopes that the pain will disappear. Most likely, the surgeon damaged a nerve which may or may not resolve itself.

Starting last week, Joy has committed herself to doing "something" each day and therefore forcing her get out of the house. It may be as simple as going to the doctor for blood tests, rehab sessions at the hospital, a mid day jaunt to a store or a late lunch. She does not have much stamina but hopefully this exercise will be beneficial. Despite her desire to drive, she has reluctantly agreed to the chauffeured family truckster. Hopefully, there will be a day soon when BOTH of us are confident enough for her to take the wheel on her own.

All in all, she has had several decent days in a row but for whatever reason, today is not one of them. Some of her test numbers have been declining which is indiciative of continued rejection so we hope this does not worsen.

Home Again

2008-05-02T09:45:00.002-04:00

We arrived back home again, safe and sound yesterday afternoon and will try to get re-adjusted prior to another return trip in June. I am still a little hesitant to believe that we will miss going to Duke in May since we have been there every month this year. If Joy felt better, I would be more confident.

Stomach pain is still pretty intense and she remains very tired and still requires a lot of sleep. I wish I could tell you that she is better and improving each day but such is not the case. We still take things one day at a time. We had a nice dinner with our friends in Durham as I previously mentioned but that completely wore her out so I doubt if we do anything like that real soon.

I won't stop the blog this time but will probably only update weekly. We sincerely appreciate the loyal readers and followers of Joy's new pathway of life. We thought we understood when the doctors told us that a transplant would be trading one disease for another. We did not. Her heart, kidneys and eyes are getting some extra rough miles on them so we hope they can sustain through this.

Discharged, again.

2008-04-26T10:23:00.002-04:00

Joy was freed from confinement late Friday afternoon. After meeting with the home health care provider, Joy traveled with me to run several errands and tolerated that activity quite well. Once we were back at the hotel for the evening, it took a couple hours to get meds and insulin supplies reorganized, pump/feed set up going and adapting to a new schedule. To say she was tired would be an understatement.

The weekend will be for R&R , a few more errands, maybe some Duke baseball for Wayne and dinner with transplant friends on Sunday afternoon. It will be a BYOC (bring your own cans) for Joy. Actually, this time around she can eat liquid or soft pureed foods for comfort or pleasure while relying 100% on the cans for nourishment so maybe we can allow her to sit at the table and eat some dessert.

She has a clinic appointment for lab work on Monday and hopefully will be ready to hop in the family truckster on Tuesday for a couple days ride home.

Our next return trip to Durham will be in late June. We have been here in January, February, March, April but somehow will manage to miss May. How could that happen? Maybe I should not jinx that!

More to come..............

IT WORKS

2008-04-24T19:14:00.002-04:00

Well, sew my head to the carpet! The procedure to remove the kink in the tube was brief and productive. The tube flushes as designed and they will begin overnight tube feedings tonight. Thanks to an imaginative resident and convincing the interventional radiologist, correcting this problem by inserting a wire through the tube is a first for Duke!

Stomach pain continues but showing signs of progress. She has five incisions in that area so it makes sense that she should have some pain but this has been a little more intense than anticipated.

Rejection IV medication is complete, the low white blood cell count has been treated for now and if feeding goes as planned tonight, plans are for discharge tomorrow (Friday). We plan to hang out here for a couple days just to better ensure that all the pieces are working prior to heading home. Besides, she is not looking forward to the 900 mile trip in the family truckster on the day that she is discharged.

Maybe, possibly, hopefully Joy is making some progress.

The Tube

2008-04-23T20:00:00.002-04:00

Despite all efforts, the feeding tube remains clogged since Monday night. A resident surgeon even tried without success and ordered a series of x-rays yesterday to determine the cause. The tube is bent like a fishhook at the end which is in the small intestine so tomorrow bright and early, they plan to run a wire through the tube guided by contrast and imaging technology, and attempt to correct the malfunction. The surgeon said he was NOT optimistic that this procedure would resolve the blockage.

What will they do if this doesn't work? I don't want to think about that but I (we) too, are not confident this will be an easy resolve.

In the interim, she goes without tube feeds and relys on the ultra small full liquid diet meals she is served. But, for what ever reason (s), the nausea has all but disappeared. FOR NOW? I think it was the M&M's and two small bites of a Krispy Kreme that I prescribed for her.

Pain is still a significant issue and in addition to the tablet narcotics and morphine injections, they added another pain family medicine designed to address stabbing pains. Additionally, they have added pain relieving patches to the pain sights. A theory, and only one doctors opinion is that a nerve was cut or damaged and if so, the pain "should" go away in time. Medical school must have a class on learning ambiguous terminology such as the use of should, maybe, could, may, possibly, might, soon, in-a-minute, be right back, give me a second........................just to name a few. Duke has no exclusive on that however.

Joy has had the second of three infusions of steroids to treat the rejection and tolerating that OK.

Lab tests indicate an extreme low white cell blood count and low immune system so they are giving her injections to boost those numbers. They tell her that her body is absolutely prime for a full blown infection so in addition to these meds, they have re-added the medicine she was taking for the Candida esophagus infection, just to make darn sure.

So tomorrow, we will know if the corrective procedure works and if not, what will he do next if it does not (we already know that one) and how soon.

It is what it is.

Monday Evening Edition

2008-04-21T21:51:00.002-04:00

The loyal readers of this blog will remember not so long ago when I documented the feeding tube clogging and what an arduous task it was to unclog. Trips to the emergency room, using the special Duke Declogging Kit and ultimately replacement of the tube were ever so frequent. Guess what?

After only three days, the damn thing is clogged, the nurse cannot get it unclogged and has requested the kit from pharmacy. I can't wait until tomorrow to see the results of this one!

Pain management remains a big challenge but the nausea is minimal at this moment. Time will tell and it is much to early to bring out the pep band for this one. Joy is eating a few bites of the very soft diet they have allowed.

The surgeon said he would give the "go ahead" to the transplant team to begin treating the rejection and if so, this will eliminate the need for us to chance this with home health care in Illinois. When and how long this procedure will take is unknown.

Stay tuned.

Sunday Night Update

2008-04-20T22:10:00.002-04:00

Severe surgery pain continues but becoming more managable with the continuaton of the morphine IV. Four IV's are running through three lines in her arms and hand. Her veins are really being difficult in sustaining manageable lines. Another downside of the transplant and medications.

For the first time in a week, she ventured outside of the room for a walk and she appears to have tolerated a very small sampling of soft foods for dinner tonight. We are anxious to see what results or progress she has with introducing real food again. Feeding tube continues to run 24 hours and will continue at that rate until discharge.

Her surgeon called her from home yesterday and today to check on her and will be in tomorrow along with everyone else returning from the weekend.

One of our dearest transplant friends has not been eating and probably requires re-insertion of a feeding tube but he is displaying early signs of giving up and unwilling to go through surgery again. He has no appetite and never hungry and void of balanced nutrition (sounds like Joy) despite his wife's encouragement. This is typical of some of the transplant patients that we know. This is a tough one.......................he has been through so very much. Kidneys, liver and eyesight now failing primarily due to effects of meds.

Saturday Night Update

2008-04-19T21:11:00.002-04:00

Joy's extreme pain continues despite the self administered morphine IV doses. Last evenings lab results gave indications that she may have suffered a heart attack so the staff was out in full force testing and monitoring her until daybreak but it appears now after further tests and review that did not happen but, they continue to monitor her.

Nausea has minimized but duh, she hasn't had any food for 2 1/2 days. They ran saline through the feeding tube today with plans to introduce nourishment tonight. They will run that for 24 hours in the hospital and should be reduced to 10-14 hours at home.

Pain management is the issue of the moment. Nothing seems to go normal for her.

Surgery Update

2008-04-19T09:18:00.002-04:00

Joy made it through the hour long surgery and experiencing extreme amount of pain and discomfort. Feeding tube was inserted and doctor spent extra time looking at previous Nissen surgery and found everything intact and as it should be. They are now giving her morphine for pain so hope it helps. They will wait 24 hours before introducing saline through the tube and if it functions properly with no leaks, etc. then they will begin round the clock feedings. Initial monitoring is crucial because the feeding nourishment significantly impacts the blood sugar levels and immunosuppressant medicine levels.

Getting very difficult to continue to see her suffer with pain, discomfort and frustration.

More Surgery and Rejection Treatment

2008-04-17T18:36:00.003-04:00

After four days of exhaustive testing, the Transplant Team is unable to arrive at a definitive diagnosis and for a change, is deferring to the stomach surgeon for answers.

He feels that the tests showed nothing that requires corrective surgery to the Nissen or stomach area and also confirms that nothing in the tests gives them a clear and concise diagnosis. He does feel that the recent and extensive esophagus infection coupled with the lack of balanced nutrition is contributing to the nausea stomach issues. Also, he recognizes the impact the significant number of meds she must take is also contributing problems especially on a relatively empty stomach.

So, tomorrow they re-install the stomach feeding tube once again and add a motility medicine to her daily regimen. The idea is to give the stomach and esophagus some time to heal and rest.

Additionally, Monday's bronc lab results show rejection and she must begin steroids for that within the next couple days.

We did confirm that the Nissen is reversible but very recent studies have shown that 5 year survival has increased from 40% to 63% for those patients with the Nissen. The doctor strongly discourages reversal and gives no guarantee that she would return to pre-transplant condition.

As I posted recently, we are not necessarily optimistic but see this process as the best alternative at this time. Don't ask her if she made the right decision to have the transplant.

Hospital Again

2008-04-15T20:35:00.002-04:00

For the sixth time in less than a year, Joy was admitted to the hospital to hopefully diagnose and treat her nausea / stomach pain issues. They ran several tests Monday and today the results of which are not yet known. What we do know is that her condition remains the same. She has tests scheduled for Wednesday and Thursday and hopefully, this will provide a solution.

Neither of us are optimistic at this point but we will see.

We're Off To See the Wizard (s)

2008-04-10T23:00:00.002-04:00

The bags are packed and the family truckster is loaded and ready for another return trip to DUMC. Appointments begin bright and early Monday.

Joy's nausea and flu like symptoms continue and gradually worsening. She feels worse now than anytime since transplant and it is becoming more of a challenge for her to be optimistic.

So we go.

Home Again, Albeit Brief

2008-03-30T14:54:00.002-04:00

We returned home safe and sound Saturday and car is unloaded and we are procrastinating on the unpacking part.

Treating Joy for the fungus infection (Candida) was paramount and there is no way she can really tell if that is improving or not without the benefit of additional tests and procedures. The nausea issues continue so we await diagnosis and direction for that issue when we return in a couple weeks. She still feels like she has the stomach like flu and symptoms have continued since January. I don't think she wants to think about the options on this one.

So, on or about April 11th we hop in the family truckster and head for nice weather again. I will keep you abreast of our journey at that time.

Update from Durham

2008-03-26T18:52:00.002-04:00

Joy has been released from the hospital after receiving IV's and meds to target the fungus infection in her esophagus although she really doesn't feel any better than when we arrived. They say the tablet form of the IV drug Diflucan should eventually resolve the problem. We will see. Questions remain as to the treatment of the slow emptying esophagus and stomach issue so will have to address that when we return in mid-April. They did not feel they could address that issue now given the massive infection issue. It would have been fantastic if they would have identified this infection when she was in the emergency room in Illinois but, I guess that is why we chose to come to Duke. They identified the problem quickly.

So, we leave for home tomorrow and will get home in time to unpack, regroup, re-pack and return to Durham in a couple weeks. But again, it is what it is and we bought into that long ago.

Weather is beautiful with temps in the upper 70's and low 80's and trees and flowers are blooming in typical southern spring splendor.

Sunday Night Update

2008-03-23T20:24:00.002-04:00

Today was a virtual repeat from yesterdays update in that meds continue, nausea continues and Joy still feels like she has the flu . Hopefully her doctors will return from Easter weekend refreshed with some answers.

A "new" transplant friend died yesterday after a very difficult struggle from lung transplant surgery near the end of last year. She was in her mid 20's, weighed 50lbs and died in her sleep after going into a coma a few days ago. She recently checked herself out of the hospital and gave up on her fight and wanted to die in her own home. She has had an extremely difficult journey. That is 3 of our transplant friends that have died since July.

Stay tuned.

Durham Saturday Update

2008-03-22T20:47:00.002-04:00

Joy arrived to her hospital room about 6PM last evening and in addition to receiving her standard issued meds, they started an IV medication targeting the esophagus fungus infection.

Otherwise, she feels about the same and very anxious to get these current issues resolved. At this point, we really do not have any more information. I will update tomorrow night.

A Happy Easter to everyone.

Durham Friday Update

2008-03-21T14:57:00.002-04:00

Flu like symptoms continue and they have identified the specific infection so we are awaiting a call from Duke for admission later today. The course of treatment is expected to be a couple IV's and oral medication. Length of stay is expected to be short but we have heard that before.

It is only fittin' that we be here for this Easter since that has been the norm for the last two years.

It is what it is.

Update from Durham

2008-03-19T18:26:00.002-04:00

The multitude of tests have been completed and now we await the results of the biopsies. specific diagnosis and treatment.

Preliminary findings show a massive infection in Joy's esophagus and a delay in food emptying into the stomach. How they treat the infection will depend upon the results of the biopsies taken on Monday. The doctor has indicated that he will address the infection issue first and then focus on the delayed emptying.

He has advised us not to leave and so we wait.

Joy continues to experience "flu like symptoms" and very tired. A couple days ago she said she felt the sickest since pre-transplant days.

Recent Developments

2008-03-06T22:18:00.002-05:00

Several of you have asked that although Joy is home and through the initial phase of the transplant process, that I update the blog periodically to keep you informed.

We returned to Duke for a series of scheduled procedures, tests and clinic visits in late February and just returned a couple weeks ago. Joy is happy to have the feeding tube removed and received generally good results from that visit. Extreme nausea / dry heaves have plagued her since leaving Durham in January and seemed to have worsened these last few weeks. Our next scheduled return to Duke is in mid April and then probably around the one year anniversary, July 1st.

However, we are returning to Duke this weekend for their evaluation and hopefully resolving the nausea issue. Several hours in our local hospital including x-rays and CTscan revealed no obvious culprits and in consultation with our Duke doctors, strongly recommended we seek their advice and direction.

Joy hasn't had much energy since we returned and rests a lot throughout the day which is about what the rest of our transplant patients friends do so she has no exclusive on that however, the severe nausea appears to be more than anticipated so we must check it out.

Hopefully, they can find the solution to improving her quality of life.

Thanks for your continued caring and until we meet again,

GO BLUE DEVILS AND BEAT THE TAR HOLES (whoops, I think they are Tar Heels)

WE ARE GOING HOME

2008-01-03T21:28:00.000-05:00

This chapter comes to an end.

Christmas Came

2007-12-29T15:42:00.000-05:00

As much as I hate to admit it, staying here for Christmas was the right thing to do. I am slowly gaining my strength back from the stomach surgery, but need a few more days of rest before we head home but, I am already starting pack. We are boxing up all my summer clothes and will mail them back, and we bought a car top carrier for all of our extras.

The Wednesday before Christmas, Crystal and Wayne's niece, Lora, came over for a visit and bearing gifts. We have two small Christmas trees decorated and garland, bows and lights to make the apartment more festive. Wayne and I would go out for an hour or so every afternoon shopping and we eventually got it all done. He wrapped all the gifts, so we managed to get everything done, and with all the gifts it was "beginning to look a lot like Christmas."

The next day Cathy and Kayce flew in after spending the best share of the day at O'Hare. On Friday night Wayne took them to a Duke basketball game and they got to sit with the Cameron Crazies, which they loved. My nephew Daniel stopped in on Saturday evening to spend the night on his way to Florida. It was so nice to have a steady stream of company. It really made it seem more like home.

Sunday morning we packed up the car and made the 3 hour drive to Caroline and Jim's house at the coast. Their house was decorated beautifully and Caroline and Crystal had all the menus planed out and it was wonderful. We lit candles and sang Christmas carols and I was able to eat anything that was soft, and even had a few pieces of candy. It turned out to be a wonderful holiday.

We came home late Christmas day, and Cathy and Kayce flew back to Chicago. I saw the stomach surgeon on Friday and he has released me to go home. I'm having severe problems with my immune system and will have a 4 hour infusion on Wednesday and every 3 months from now on. IF all goes well, it is possible that my pulmonary doctor could release me on Thursday. As long as I stay healthy, I should be good to go.

Have a safe New Year and hope your Christmas was as magical as ours.

God Bless,

Joy

Happy New Year in the "Pines"

2007-12-21T11:15:00.000-05:00

We spent the day at the hospital Wednesday with pre-surgical testing prior to the bronch / dilation procedure. It may be to early, but Joy feels she may be breathing easier but make no mistake about it, still short of breath most of the time. Time should be the healer, so they say.

Thursday's clinic was the usual "all day sucker" but at this moment in time, her numbers appear to be stable or improving. She is tolerating the "real food diet" but appetite is nill and the size of her meals are very, very small. NOW! for the first time in her life, she is advised to maintain or gain weight....................not lose anymore. She is down to her high school weight and can't believe it.

We anticipate the surgeon to place Joy on regular diet and eliminate the nightly tube feeding when we meet with him next Friday. If she tolerates that and does not lose weight, the Team will meet and hopefully concur that she can be released to return to Illinois sometime in early January. A lot of if's to go.............

But she is encourage that the is the FIRST real conversation about her leaving the area albeit to return every month or so for awhile before 3 month return visits become the norm.

Merry Christmas and Happy New Year from the Carolina pines.

Discharged, once again

2007-12-13T09:43:00.000-05:00

Joy was discharged mid-afternoon yesterday so once again we are adjusting to a new routine.

As expected, she remains on a near normal diet but served in pureed form. Even oatmeal must be prepared in a blender for smoother texture. No big deal. She will remain on this program for about 2 weeks or until such time as we see the surgeon in clinic. Discharge orders indicated that she remain on tube feeding as well and we are attempting to get clarification on that. All meds can be taken orally. So far, she has not experienced any side effects to eating or swallowing.

She will return to hospital on the 19 th for a bronch / dilation procedure to open the lower airways in her lung (s). Then, pulmonary clinic with blood, lab and transplant pulmonary appointment the next day.

Believe.

Now, Wayne needs to check the Duke men's and women's basketball schedule for dates and times and hopefully Joy's schedule won't interfere with that. She may have to adjust her schedule. First things first.

Christmas in Dixie

2007-12-11T21:11:00.000-05:00

Joy had a restful night and tolerated the bronch / biopsy this morning. They removed some fluid but discovered narrowed airways in the right lung which may be corrected by a similar procedure next week. She had additional x-rays to determine the extent of fluid build up outside the lungs in the chest cavity. If significant, they may want to "needle aspirate" that fluid. Joy had pureed lunch and dinner without any apparent issues or concerns. Time will tell!

If all of the planets and moons align perfectly tomorrow, she may be discharge with the anticipated lung procedure handled as an outpatient next week. Ideally, they want to monitor her eating for a couple weeks after surgery so we must be local should complications develop. Additionally, the transplant team wants her to remain local until she is once again back to normal from an oxygen saturation perspective so it wise to remain here and enjoy Christmas in Dixie and not create a hasty return home. Given the current weather conditions in Chicago and our high 70 degree days here, spending the holiday at daughter Caroline and Jim's home on the NC coast sounds quite appealing. Cathy and Kayce will fly down to join in the festivities. Truth be known, they probably just want to get out of the bad and cold weather in Chicago. Go figure!

Progress?

2007-12-10T21:33:00.000-05:00

Although the 24 hour tube feeding, continuous supplemental oxygen and several IV's remain, Joy is making some progress. The O2 saturation levels hold at satisfactory levels WITH O2 but drop to much when walking, bathing, etc..

Swallow test conducted today showed "slight" opportunity for thin fluid to go down the windpipe instead of the esophagus but they feel they can train her to change the way she eats and swallows to overcome this issue so the plan is to start her on pureed food tomorrow, after she recovers from another bronch / biopsy procedure. Hopefully, but doubtful that they can extract enough fluid from her right lung to improve her breathing and shortness of breath. One of the conditions for going home will be to be able to function without O2, once again.

So we look for result from the biopsy / bronch, see if she can tolerate food once again and continue to show improvement with the breathing issue. And, no aspiration. She was lucky that this one happened in the hospital! Otherwise, it could have been even more catastrophic or potentially fatal so we MUST ensure she is eating and breathing before we could consider leaving the area regardless of the calender.

Will see what tomorrow brings.

Not Much Change

2007-12-07T21:52:00.000-05:00

Modified swallow test indicated "some" aspiration but test was completed late in the day so we do not know where they will go with this.

Vomiting has ceased but it should since she hasn't eaten and water only limited to small sips with some meds that cannot be handled through IV's. Back on the stomach feed for 24 hours, not just 14, at least for now. Chest x-ray has changed very little. O2 levels drop significantly for any activity other than laying in bed. They feel this should improve as the body rids the aspiration from the lungs.

Now it is the weekend and nothing will happen!

Remember "The Dime"

2007-12-06T21:50:00.000-05:00

When I left the hospital last evening, Joy and I walked the halls and she was eating the full liquid diet albeit esophagus issues that I mentioned yesterday. We fully anticipated discharge today.

I think I have mentioned previously, how this process can "turn on a dime".

When I arrived this AM, she was on oxygen, several IV's, folley catheter, no food, no water, no activity and was extremely uncomfortable from almost non-stop vomiting. Her oxygen saturation level dropped to the high 70's (>88% causes concerns) during the night and she became extremely short of breath which drew a room full of physicians, nurses and respiratory staff. Chest x-ray showed significant fluid around the right lung.

By mid day, the vomiting had ceased and her O2 levels returned to the low to mid 90's WITH supplemental O2. Her stomach area is very sore undoubtedly caused by the strain from the vomiting. The speculation is that she aspirated food into the lungs possibly due to previously mentioned issues with the esophagus and edema from the surgery. I don't understand all of this since my degree didn't cover gastroenterology and pulmonary specialities.

They have scheduled another and more technical swallow study test for tomorrow to get a better picture of the problem. They have prescribed Lasik (diuretic) again with hopes this will reduce the fluid around the lung. So, no food until that swallow and back on the stomach feeding that we thought was history.

"We knew it was just to good to be true".

Progressing

2007-12-05T19:41:00.000-05:00

Joy continued to improve today and now on a full liquid diet which we expect that she will be on for a couple weeks prior to the pureed foods. She is definitely experiencing problems with food and meds slowing down or holding in her esophagus which at times is rather painful and uncomfortable. How long will she have this issue? Days, weeks, months or forever????? Hopefully, more like weeks but unfortunately, this is a very uncomfortable but frequent side effect of the surgery.

It is possible that she may be discharged tomorrow, but time will tell.

Unable to Complete Barium Swallow Test

2007-12-04T21:06:00.000-05:00

She had a restful night and is doing better than either of us expected today thus far. We were extremely disappointed that she was unable to "pass" the swallow test but it did not reveal any leaks or tears so that is a positive. We are not really clear on when they will repeat the test but may wait a couple days for internal swelling to diminish. They removed her IV's and pain med pump and plan to start her on oral meds tonight or tomorrow. They gave her some liquids and she did not experience any problems so we do not know what to expect or when she will start with pureed foods.

Surgery Completed

2007-12-03T22:36:00.000-05:00

Joy's surgery concluded late this afternoon after several hours delay due to emergency surgery on a kidney transplant patient. According to the surgeon, the surgery went according to plan and she remained stable throughout. Although heavily sedated, she was awake enough to suggest that I go home, get a good nights sleep and take my time getting back tomorrow. They were hooking her up to a morphine pump so she can administer pain med as needed.

Plan for tomorrow will be to complete another "swallow" test to ensure their are no leaks and that she actually can swallow. If this is successful, then it will be clear liquids for a day and then combination of clear liquids and pureed food for a couple weeks. Then if that is successful, it will be very small but frequent meals of extremely well chewed small bites of food the rest of her natural life.

A long way to go...........................we know of more people with complications from this surgery than successes so we hope for the best.

Surgery Date Confirmed

2007-11-30T18:17:00.000-05:00

Surgery is now scheduled for 12:30 PM Monday, December 3, 2007.

Hopefully, the 4-5 hour surgery can be done with several laproscopic incisions, then begin her recovery with light liquids and pureed food prior to being discharged in a few days. The feeding tube will remain until we return in January or February.

No more nightly tube feeding? Significant reduction in insulin injections? No more acid reflux?

Joy has a bronchoscopy schedule for December 11 th and pulmonary clinic on December 12 th. Will she get a release then? A lot of bridges yet to cross. One of our new friends was packed and planned on returning home after her clinic visit yesterday but bronch results indicated problems and she was re-admitted. Her daughter seemed a "little down". Ya think?

Joy will really need our prayers for this one!

Still No Surgery Date )*&^%$#@(

2007-11-21T17:20:00.000-05:00

We have not updated this site lately since nothing was proceeding according to our plan. However Joy continues to gain strength, shows improvement and feels the best post surgery.

Clinic went well today and her labs, x-rays and manometry test were satisfactory and all of Joy's doctors are convinced 100% that this surgery is necessary and the outcome should provide protection to the new lungs from reflux aspiration and therefore increasing her lifespan.

So you ask, "what is the delay?" Depends upon the &%$#(@$ surgeon's schedule and thus far we have not been successful in getting a date that sticks. Maybe next week? The following week? And, Joy is getting very, very, very hungry. Almost 5 months and no food and limited water.

Cathy and Kayce have been invited to one of our friends house for Thanksgiving dinner. Kevin is going out of town on a hunting trip. Caroline and Crystal along with niece Lora and her friend Erica will join Joy and me for Thanksgiving dinner at a local restaurant. Joy will sip water on ice while we indulge. She might nibble a little but don't tell anyone!

So, we enjoy the beautiful weather and fantastic fall foliage and pray for rain to help towards the 60 day remaining water supply for the area.

Happy Thanksgiving

Surgery Date Unknown

2007-11-09T10:05:00.000-05:00

The surgeon called this morning to advise that after studying some of her recent test results, he wants to confer with endoskopy doctors to resolve any concerns. The concern is and actually has been previously, that muscles in her esophagus have weakened which may delay food movement (motility) to the stomach. So if he reduced the size of the opening into the stomach to reduce acid reflux, it may also cause motility problems at that juncture and compound her problem. Since these tests were done more than a week ago, we just wonder why this issue was not resolved prior to yesterdays roller coaster ride of emotions.

So, we wait and expect to get an update from the doctor "sometime next week", whatever that means in doctor speak. This will be a 4 1/2 to 5 hour surgery so we want them to get it right!

Joy continues to gain strength, finally getting out and about and still catching up on her sleep. Clinic went well yesterday and PFT numbers were the best post transplant.

SURGERY CANCELLED

2007-11-08T12:53:00.000-05:00

Stomach surgery scheduled for tomorrow has been cancelled, apparently over concerns with recent test results. That is all that we know at this time (1:00 PM EST).

Stay tuned......................

Progress

2007-11-05T21:14:00.000-05:00

We went shopping on Saturday and Sunday for a couple hours which included a trip to the nail salon and a pharmacy run. Both, pretty good days and she said she feels a little human for a change.

She received a phone call today from the surgeon's office advising that her surgery is scheduled for Friday. Between now and then, we will meet with him in clinic, have a regular clinic visit and a pre-op clinic appointment and another day of rehab. Joy tolerated her first day back to rehab today quite well.

This surgery is not the panacea to end all and is not without risk but, we have to trust the doctors medical advice that it is absolutely critical so, we proceed. The surgeon describes her reflux severe enough to cause lethal incidences and worthy of the risk for increasing her chances of survival.

Discharged

2007-11-01T22:29:00.000-04:00

this Against Joy's wishes, she was discharged this afternoon and will return to clinic next Tuesday to meet with the surgeon to discuss a date, hopefully soon. They promise any delay is for medical reasons and not scheduling. The rejection and infection issue has complicated this somewhat but not to the extent that they cannot do the surgery. The doctors are 100% certain that it is medically necessary due in part to Joy having the worst case of acid reflux they have seen. If she did not have the surgery, the reflux would continue to infect and destroy her lungs and drastically impact her survival. Six to nine months of the three antibiotics should control the MAC infection mentioned a couple days ago.

So, the Thanksgiving trip looks doubtful but she is adamant that as Dolly Parton sings, "Trim the tree and wrap the presents, turn the Christmas music on, this Christmas I'll be home with bells on."

No Real News

2007-10-31T20:42:00.001-04:00

Joy has completed all of the tests that we are aware of and it does not appear that the results will preclude her from having the stomach surgery. The question is, when?

She may be released tomorrow but then have to wait "a brief period of time" before surgery. Clearly, this is not what she wants. Instead, she would prefer to stay in, have surgery, recover, return to apartment for brief period of time and then head north. She does not agree with the doctors that the rehab activities will strengthen her as much as they think it will. And, she is getting really, really anxious to eat and drink something!!!! Both doctors will confer tomorrow and hopefully, we will know the plan.

More tomorrow.

Surgery Cancelled, for now at least

2007-10-30T20:20:00.000-04:00

Joy feeling only slightly better and certainly not worse. She had a PH test today to look at the esophagus after an earlier test indicated that some of the muscles were not contracting properly to push the food to the stomach. Tomorrow she is scheduled to conclude the testing with a endoscopy and then the surgeon and her transplant team physician will consult to determine what they are going to do. Joy would just like to pack up and go home but that too, is risky so we wait.

FAQ....Will she be able to swallow food properly after stomach surgery?
Is the acid reflux from the stomach causing aspiration and damage to lungs?
Can she avoid surgery completely?
Can she wait and have surgery later and if so, can she eat regular diet now?
Can they do anything to repair the esophagus muscles?
Are there other issues unknown at this time?

Answers to the above....................don't know. I guess that is why there is a tomorrow or the next day.

Oh by the way! Steve, cook the steaks well done. It was like taking candy from a baby.

Monday Update

2007-10-29T19:00:00.000-04:00

Joy feeling slightly better but not significantly improved.

A test today indicated a small blockage or narrowed esophogus (sp) which inhibited swallowed material to reach the stomach so they plan another endoskopy (sp) tomorrow and a PH swallow test Wednesday and then consult with stomach surgeon.

So, will she have the stomach surgery Wednesday? Don't know, so stay tuned.

Weekend Update

2007-10-28T20:14:00.000-04:00

Joy's condition remains relatively unchanged and as you know, things around hospitals get pretty quiet on the weekends so no news from the biopsy or test results. Still do not know if the stomach surgery will be done Wednesday or not. One day at a time.

Pneumonia

2007-10-26T22:14:00.000-04:00

Bronch / biopsy preliminary assessment is pneumonia plus the rejection. The removed a lot of "yucky" fluid and some solid tissue segments which will be analyzed in the lab over the next few days. They used a balloon process to enlarge a narrowed airway which may give her some relief to the shortness of breath issue. Theory continues to be that she is aspirating acid reflux into the lungs which develops into infection. Surgery may be delayed due to her overall weakened condition. Joy is discouraged at the possibility of a delay but I am not sure she could handle it given her current condition. A change in antibiotics should take place overnight. Doctor said this bronch looked much worse than previous procedure completed about a week ago.

This doctor has been absolutely fantastic and extremely aggressive so we continue to anticipate.

Helen, the wife of friend Claude that died from transplant surgery was in town for memorial service for those transplant patients that have died recently and she came to visit us. She is doing great but it was an understandably emotional visit.

Nightly News

2007-10-25T20:42:00.001-04:00

A couple more tests last night and today have not yet defined her shortness of breath and weakened condition. The doctor is waiting on the results of one of the heart tests completed today with focus on possible fluid build up around the heart and heart / oxygen related issues. The doctor is committed to keeping her until he finds the problem and solution. He just cannot pinpoint at this time. We have 100% confidence in him but frustrating to Joy that she does not feel better.

Although she recently had a bronc biopsy, the doctor will complete another tomorrow with hopes of discovery.

Steve B., enjoy your game Saturday. I doubt seriously if Joy will feel like watching unless she improves drastically.

A Few More Days?

2007-10-24T19:45:00.000-04:00

As I suspected, they are continuing her steroid and antibiotic treatments in the hospital with additional tests planned tonight or tomorrow to explore the reasons for her continued shortness of breath and overall weakness. Her voice is just a whisper at times.

Pain Management Clinic will recommend drug treatment to the transplant team so we hope they will agree and implement accordingly. Pain is not terribly severe unless she is exercising or walking but regardless, we want to find a solution for the future.

Depending upon the results of these tests, she may have to have the chest tube reinserted (ouch....that was painful) or if fluid build up is not a problem and if the scan shows aspiration of reflux acid into the lungs, they will try to schedule the stomach surgery as quickly as possible. Until then, she is not allowed any water and pills must now be crushed and administered through the stomach feeding tube.

Her former pulmonology doctor from Duke came by for a social visit today and she chided him about not telling her it would be this bad but, he reminded her that he told her over a year ago that she was trading one serious disease for another and encouraged her to keep the faith that things will get better. He did not however, mention a timetable for that. smile.

A couple of our transplant friends Wayne and his wife Carol came by to say hello today. Wayne is back for a clinic visit and scheduled bronc and appears to be doing well. He got his lungs about a month before Joy. We wish them the best.

We will wait and see what tomorrow brings. Good night.

Infection Plus Rejection

2007-10-23T19:48:00.000-04:00

Long running lab tests have confirmed that Joy has infection in addition to rejection( see previous blog). She mentioned a few weeks ago that whenever she got an infection, she was hoping that it would not be Mycobacterium Avium-Complex (MAC) however that is what she has. It is a slow growing infection that is more difficult to treat since it resides inside the cells and tough to kill. MAC is most likely environmentally acquired and normally found in pulmonary disease patients and in their respiratory track. So, in addition to the high dose of steroids she has received, they added two strong and high dose antibiotics that she must take for about NINE (9) months!

She is still experiencing shortness of breath when walking but not as severe a few days ago. She just doesn't feel good and I think the steroids and antibiotics have a lot to do with that. They are planning a pulmonary function test and more x-rays tomorrow and may be discharged but I will believe it when I see it. She certainly is not anxious to leave but she will be able to continue this same course of treatment at home. Regardless, we will make the Pain Management Clinic tomorrow to seek help with the ongoing back pain issue. Then, Center for Living Thursday and Friday, all day clinic appointment Monday, pre-op clinic Tuesday and surgery on Wednesday. I hope she can handle it all.

I feel so bad for her...............she has not had a real good day in the last six (6) months and certainly not since transplants and the outlook ahead may be more of the same when you add all these issues together. It would be just fantastic to see her have a good day, just every now and then. God, just a few days would be fine........................ for now!

Rejection

2007-10-22T21:06:00.000-04:00

They removed the chest tube late yesterday partially due to the belief that it had done its job and also that it was not functioning properly. But, it did drain a significant amount of fluid and apparently most of the air.

Several x-rays later, they determined that fluid / air build up was no worse than at the time the tube was removed so at this moment, it does not appear that it will be necessary to insert another. That was painful.

These current problems was the result of rejection and is now being treated with high doses of steroid IVs and antibiotics, to treat any residual infection that may be present but has not developed cultures in the lab. Her insulin levels are jumping all over the place both high and low caused by the high steroid doses. They are monitoring closely.

There is absolutely nothing about this that is a surprise and it is simply a part of the normal life for most lung transplant patients so, we live with it and move on. Although we certainly do not want flare ups like this, it is only a matter of when and not if especially, but not limited to the first couple years. At least at this time, it is treatable.

Hopefully, a few days of this regime and she can come home for a couple days prior to going back to the hospital next week for surgery. But, one day at a time.

Hospitalization Update

2007-10-19T21:35:00.000-04:00

Joy slept the best last night that she has, probably since transplant. She felt pretty good this morning however, she had a long day ahead.

They took her to surgery to extract the fluid from outside her lungs but within the lung cavity. They removed over a liter of fluid and although she was a little sore and groggy when she returned, she was breathing better but not 100%.

Just minutes after she returned to her room, they took her back to surgery because the post-procedure x-ray revealed a partially collapsed right lung and it was necessary to insert a drainage tube in her back to remove the accumulation of air in her lung pleural cavity and also allow for training of fluid not removed in the earlier procedure. She was in a lot of pain after and very uncomfortable when I left tonight.

The preliminary report from yesterdays biopsy does not indicate infection and a quick examination of the fluid removed today does not appear to be infection and does not show emphatic evidence of rejection however, they feel she exhibits classic signs of rejection and they plan to start treating that empirically tomorrow with anti-biotics and steroids. They will x-ray her in the morning to determine if any fluid remains and ensure the lung has expanded normally then decide how long to keep the tube in place. Maybe a couple days? IV's, feeding tube, drain/suction tube, monitors................she has about had it with tubes and wired monitors!

They do not know how long she will remain hospitalized but do not feel that this will interfere with her upcoming stomach surgery on the 31st. So she may get a few days of freedom.

This has been a long and exhausting day for her and although she is not depressed over these blips, she is understandably a little down. Hopefully, her night will not be to bad and she will feel better tomorrow.

Admitted to Hospital

2007-10-18T19:37:00.000-04:00

Joy has experienced unusual shortness of breath and increased anxiety levels over the last several days and a Transplant Team doctor wanted us to bring her to clinic immediately for an unscheduled visit. Although most of her numbers are still reasonably satisfactory, she was symptomatic of undetermined issues and he quickly admitted her to the hospital. We do not feel these issues are directly related to her emergency visit last week especially we are seeing progress after that visit.

She presented with a couple issues that may have indicated blood clots or a pulmonary embolism however, I think by the end of today several tests have ruled those out and blood thinners should not be necessary at this time.

The surgical bronc / biopsy revealed significant narrowing and inflammation of her airways plus signs of possible infection or rejection but the cause or treatment for these will not be determined until later tomorrow after they receive the preliminary lab results. The narrowing of the airways is something new and they do not know the cause at this time. Further tests are scheduled tomorrow focusing on a "pocket" of fluid build up around her right lung. They cannot tell at this time what this represents and they may need to do a needle biopsy for an accurate diagnosis.

They introduced a couple new meds to help with anxiety and insomnia issues and Joy gladly welcomed the help. Now, we will see if she sleeps tonight!

So, we are glad they have validated some concerns that support her symptoms and are encouraged and confident this trip will produce results. Everything considered, this is only her second unscheduled re-admit since transplant which compares (I should not do that) favorably with most other patients especially during these first three plus months. We are hoping that these issues are identified and treated and not interfere with her scheduled surgery on the 31st. Nothing at this time indicates that it will.

We continue to appreciate those of you that read this blog and enjoy your comments. If for whatever reason you wish to comment outside of the blog, you can use my email address at waynebulla@sbcglobal.net

Emergency Run

2007-10-12T10:41:00.000-04:00

The last couple weeks has seen a regression and my senses were telling me that Joy would be back in the hospital soon for whatever ailed here. But we escaped with only an emergency visit.
Brother Don and wife Bonnie were in the area visiting their daughter Lora and met me close by for lunch when I received an urgent call from Joy. We quickly returned to the apartment, assessed the situation and Don and I loaded her in the "family truckster" and off to Duke we went.

Many of the regressive issues and concerns appear to be medicine induced reactions or intolerance which I have suspected for some time. Her doctor eliminated two meds that he felt were causing these issues but it is my guess is that it will take some time for her system to react. He later added a mineral supplement to bolster that deficiency.

In addition to the daily Center for Living rehab and weekly clinic appointments, she has an appointment with the Pain Management Clinic (continued back pain issues) on 10/24, surgical bronc / biopsy on 10/22 and Nissen (stomach surgery) on 10/31, so that should keep her busy!

But, Duke football continues to lose, The Ohio State University Buckeyes continue on a roll and for my Notre Dame friend Dave, he is happy just to win a game. And for my Northwestern fan Dave, he is happier about his season than the Dukies so everybody is a winner! And for our Penn State loyalists, it may be tough love time and merely say "it is time for you to go". smile. Duke women's and men's basketball practice starts tonight so I know where I will spend my afternoons for a couple weeks while Joy sweats it out at CFL. I was lucky enough to purchase face value tickets for two regular season Duke men's basketball games................priceless! I just knew there was a reason we had to remain here.

September Sunset

2007-09-29T19:48:00.000-04:00

Over the course of this last week, Joy has made great improvement in several areas which on the surface seem slight however, they are significant steps in her rehabilitation. For starters, she has not used oxygen for a couple weeks even with exercise. She walked the long halls to the clinics and tests without the aid of a wheelchair. Additionally, she stopped using the rolling walker at rehab, walked a couple days holding hands with a PT and now walking almost a mile on her own.

Her back pain continues to be an obstacle and we should get the results of a recent MRI and CT Scan in clinic this next week. Lab results (blood, O2, vitals, pulmonary tests) remain generally stable but continue to adjust insulin to balance low blood sugar readings. We believe the quantity of meds and more particular Prograf (anti-rejection), is contributing to some personality issues but over time they should be resolved.

Her progress sometimes seems a little slow when compared to a couple of our new friends but we also know of several that have been back in the hospital 3-4 times and still on round the clock IV's at home and still on oxygen and greatly challenged at the rehabilitation center. And, we have learned of others that did not survive, so overall we are fine with being in the middle and continuing to progress. We met a 5 year survivor in clinic this week and although his road to recovery has not been perfect, he is quite happy to have this extra time and appreciates the time with his grand kids and traveling. It is quite alarming that on average, only 20% of the transplant patients are compliant with medicines and clinic follow-up appointments and this was the root cause of 3 out of 4 of the aforementioned deaths.

Surgery is schedule for October 31st but since this would interfere with her plans to go "trick or treating", we plan to ask her doctor to convince the surgeon to schedule it sooner. We know this surgery offers additional challenges so we want to proceed as soon as realistically possible and begin to learn how to eat all over again. An Illinois Thanksgiving?

Update

2007-09-20T09:52:00.000-04:00

We have not had any significant developments or changes this past week but we wanted to keep you current.

Joy had her clinic visit Tuesday and everything is progressing. O2 levels are up and lung function has increased slightly. She will be having CT Scans next week of her lungs and back. They are trying to determine the cause of her back pain. A nerve block may be indicated if warranted. She saw the stomach surgeon and we are waiting for a call to schedule a date for the surgery, probably the middle of October. Once she has recovered from that surgery, we should be able to return home. Otherwise she continues to exercise on a daily basis at the Center for Living, receive tube feedings 14 hours per night and has weekly clinic visits and tests.

We will keep you posted if anything new develops. Joy thanks everyone who remembered her birthday. She even received a must unusual gift of a camel (stuffed). She really enjoyed my sketch of a birthday cake but it went up in flames when I lit the candles. What a shame, it looked like it would have been delicious.

Musings

2007-09-13T19:16:00.000-04:00

Joy would like for me to share some of her thoughts with you. My daily trip to the mail box usually results in a bounty of get well cards for both Joy and me. After a prolonged illness, greeting cards usually begin to fall off after several weeks however, we have continued to receive numerous cards to add to our several hundred on a daily basis. Now, this is not a solicitation for more cards but a sincere acknowledgement of our appreciation for your extra ordinary concern for both of us. This includes family members, friends, church friends and high school buddies. Joy was especially touched to receive a blog comment from Bob Loghry several days ago. Bob and Joy began kindergarten together and traversed the Montpelier Public School System through the 12 th grade. It was such a thoughtful gesture and to realize how firm old friendships really are.

For, Stephen Bauer, just in case the great "The Ohio State University" wins the battle with your school, can we settle on dinner at Hamilton Lake next summer? This will be conditional upon your mother not eating the seafood platter next year.

People are beginning to inquire about our return to Chicago and the direct answer is that we do not know but, we are "kinda" hoping for the first of November but will disappointed if we are not there by Thanksgiving. Just to many bridges to cross to be more specific.

ER AGAIN !

2007-09-07T19:36:00.000-04:00

To use a good southern phrase and we are in the south, "it just ain't fittin' " if we don't visit ER more than once or twice while we are here! After working most of the day yesterday (Thursday) trying to get Joy's feeding tube unclogged, we gave up and received the doctor's permission to use an alternate tube "one time only" to provide some evening nourishment with plans to visit ER by 7 AM today (Friday). The tube actually has a tube within a tube, one to the stomach (G)and the other to the intestines (J) which is the one that we normally use. The advice to arrive that early was perfect! There was no one in the waiting room when we arrived and got back to a room faster than getting to a hotel room. By the time we left almost 8 hours later, the waiting room was packed (easy 150+) and the nurses told me it was an exceptionally busy day with serious and numerous trauma patients. Four Life Flight patients as well.

So, after consulting with team doctors, they decided to perform surgery and remove the old tube and replace it with a new one and so far it is working. I wish I could say I was optimistic, but we will see. Joy tolerated the surgery and is recuperating at home. Due to this side trip, we both missed support group and her rehab today. It is so difficult to sustain any continuity in regards to rehab but hopefully, the tube issue is behind us. I think this may give them thought to accelerate the stomach surgery but, that is no miracle cure either. She will have to learn to eat all over again and for several, this has been difficult.

Unless we have more issues develop, the plan will be to rest up over the weekend and start all over with rehab on M-T-T-F with clinic on Wednesday.

And today, Nifong goes to jail, the lacrosse players file suit against the city of Durham for $30,000,000.00 and the city gets a new DA. Oh yah, Duke football will try to make it 1-21 against Virginia tomorrow. Not!

IT"S ME!

2007-09-02T11:10:00.001-04:00

Sunday, September 2, 2007

You've heard from Wayne and the kids, but I have not been on the computer for several months now. The fact that I am writing, should indicate that I am slowly on my way back. The anti-rejection medication makes everyone have tremors, so it is difficult to type, but I wanted to say thank you to everyone who has written, sent cards, gifts, and letters of encouragement. The prayers have kept me going when I wanted to give up, so keep the prayer warriors at work!

Wayne has been the caregiver poster child. He is working harder than he did when he had a full time job, as this one never stops. I literally would not be here if it weren't for his loving and faithful care.

I will have a bronch and a surgical biopsy on Tuesday and will see the doctor on Wednesday. We all have to have blood tests, a chest x-ray and PFT (pulmonary function tests) and see one of the doctors once a week. After 3 or 4 months, it will be once a month, and eventually every three months. So they keep a close eye on us.

Hope you all have a safe Labor Day. I think we will take a ride this afternoon, and maybe drive to Cary where we use to live. Wayne attended a Duke Football game yesterday, but his presence didn't help, as they lost their 21st game in a row!!!! But, all is not lost, as they have the best graduation rate in division one. They post that at the games, since their record is so bad. Crystal came and sat with me.

Love and praise to all of you.

Joy

Midweek Update

2007-08-29T17:33:00.000-04:00

Joy continues to exhibit signs of improvement but nothing startling that would make headlines. She had possibly, her best day since 7/1 on Monday. Noting earth shattering, but completed her required exercises and was not completely wiped out when she got home.

Although it was a long 9 hour day with her lab work and CT Scan in the morning, surgeon appointment in mid afternoon and late afternoon with her primary transplant team physician, the day went well until we got home. Lab work showed some progress and the need to adjust a couple meds. Surgeon visit went well and validated that it was not an "IF" but a "WHEN" they would do the stomach surgery. We all agree that she needs to build more strength before another surgery. Her primary physician is still concerned that some signs of pneumonia remains and the biopsy cultures are not clinically conclusive at this time. She will have a bronc and lab studies next week and clinic appointment with primary physician the following day. Lung function has improved but remains low at 62% (I believe).

I was successful in getting the Rx for the Feeding Tube Declogging Kit that I mentioned earlier and not a moment to soon. Before giving Joy her evening meal tray last night, I attempted without success to flush the feeding tube. Crystal and I worked until after 10PM, sent Joy to bed without dinner with plans for me to go to Duke Pharmacy today (Wed) to fill the Rx. Finally, after another several hours this morning, I got the tube unclogged and fed her a delicious 2 hour lunch. Although I am diligent with the flushing schedule, it may require more water and more frequent flushes to an already volume intolerant patient. Such is life.

So, 2 more days of rehab, then Sat-Sun-Mon off, clinic Tue and Wed and back to rehab Thur and Fri. She has completed 7 of the required 23 days of rehab but we know she will need more than that, so the 23 is a moot point. She will continue rehab here until we head for Chicago and then resume an aggressive program there.

Happy Labor Day.

Our First Trip to ER

2007-08-25T09:00:00.000-04:00

This is our 2nd full weekend at home since June 23rd and we will use this time to rest. More later.

Joy continues with the ups and downs of recovery, but showing very slow signs of improvement. Shortness of breath with minimal activity, nausea and continued use of oxygen linger on. Her lungs are working at 57% capacity so they have room for improvement but, they will never be 100%. She still has a couple spots on her right lung believed to be remnants of the pneumonia. No bronc or biopsy was deemed necessary since the absence of negative trends. Exercise at rehab is essential to improvement and Joy has be attentive every day except yesterday.

The stomach feeding tube that I have mentioned requires flushing with water four times a day in both ports and I have done that as required. However, on occasion and for whatever reason, this tiny tube decides to plug and then the work begins. It usually requires a nurse from the supplier of the machine and nourishment company to make a house call. On Thursday, my efforts along with her two hours failed so our only option was going to the Emergency Room. We anticipated a long wait and I was prepared with her pill box and insulin test kit, etc. but not prepared for the 15 hour waiting time. We arrived at 3 PM on Thursday and left after 6 AM on Friday morning, just in time to see the sun beginning to rise. Duke Emergency Room also serves the extended community with Life Flight Helicopters and a major Trauma Center and the waiting room is large and probably seats two hundred. It was packed! Finally, after no sleep, nothing to eat for either of us (Joy missed tube feed from 6PM to 8AM which is her normal time) blood sugar levels going down, out of pain and nausea medicine and general discomfort, they unplugged the tube and we went home. Their process is similar to what I do but they use two capsules of an enzyme dissolved in water and it resolves the issue quickly. Joy has required that "kit" twice during hospitalization. It is doubtful, but I am going to try to obtain this med to avoid ER in the future. Guaranteed, it will clog again!

So, once we were home, I hooked up Joy's feeding machine, got her settled and we both slept for a couple hours prior to next scheduled round of meds and insulin. She missed her first day of exercises at the Center for Living since we have been here and I can't blame her. Later in the morning after getting her settled in for a couple hours, I left her alone for the first time since discharge and returned to Duke to finish my last session of presenting the Caregivers Guide. The pool of potential caregivers is increasing and the attendance was good and the quality of my material was well received. A great feeling! Joy did well on her own (well yah, she slept all of the time) and that was a relief.

The 90+ degree weather didn't last long and the 100+ days have continued with sweltering humidity. But I know my Chicago family and friends won't feel sorry for us after enduring the storms and excessive rain and flooding in their areas. Flooding there, drought here.......go figure!

Next up is another scheduled clinic visit Tuesday and also a clinic visit with the doctor that will do the Nissen (stomach wrap surgery). Joy just can't wait to go back into the hospital for surgery and a few days stay. She is just so excited.

A Cold Front Moving In

2007-08-18T11:03:00.000-04:00

After several days of sweltering 112 degree heat index, we anticipate much cooler temperatures into the upper 90's, so we have that going for us.

The last couple of days, Joy has participated in daily rehab and completed all phases of the exercise program. Not a stellar performer, but since this is not a competition, it all counts toward recovery.

It feels so good not having to go somewhere today and tomorrow (Sat and Sun). This is our first full weekend at home since June 23rd. What a deal!

One of the highlights of her recovery has been the Food Cures book she received from her nephew Daniel Bauer. It was written by Joy Bauer and Dan requested the author to autograph it for Joy, which she did. So, it is from the real Joy Bauer to the real Joy Bauer. Kinda neat!

During my idle time while visiting Joy in the hospital last week, I continued to think about the overwhelming experience from her last discharge and homecoming. I felt this was something missing from the Support Group training and decided to be proactive and write a guide that would benefit others that follow. So, I put together my thoughts, prepared an outline and then a couple rough drafts (I alluded to this in my August 9th blog update). My presentation to the transplant social workers was received with praise and appreciation and with a little planning, this was the topic for this weeks Support Group. The questions were numerous and we only covered about a fourth of the material. Therefore, we plan to continue the topic next week until all the issues are covered. Going forward, they will incorporate this Caregiver Guide into their standard education process. It feels so good to know that this will better prepare future caregivers. Those days will still be overwhelming but they will be better prepared rather than it being a totally overwhelming surprise. If anyone is interested in a copy, send me your E-mail address and I will forward you the PowerPoint format presentation. It will be like reading a great novel, you won't be able to put it down. Not!

Well, with the 10AM items covered, it is almost Noon so I must now change hats and get back to my day job.

Home Again II

2007-08-15T23:12:00.000-04:00

Arrived back home after a 7:00 PM discharge and after setting up feed tube, replenishing the pill box, getting new Rx filled, revising my spreadsheets to accommodate the change in medications and times, unloading car and unpacking it is time to call it a night.

Joy not feeling that great but discharge was a viable option since she will receive the same course of treatment as she would receive in hospital. Rehab resumes tomorrow, clinic appointments next week and appointment with the physician to do the Nissen (stomach wrap surgery) a week from Tuesday. They want to move up the surgery as soon as realistically possible to minimize the complications she has been experiencing. She tolerated the endoscopy today and biopsies were sent to lab for analysis. Visual examination showed signs of a fungus type growth and acute inflammation. So, we will wait and see but until those results are known, they are treating her with the same drugs that they will probably use by anticipating the results.

Stay tuned tomorrow......................

Just Another Day

2007-08-14T20:46:00.000-04:00

It is difficult to write this blog without being terribly redundant, so I will do my best.

Nausea, headaches, limited O2. insulin up and down (low of 57---yikes) and just overall damn tired of being "sick" and not feeling well, represents the day. And it makes it worse knowing there is no light at the end of the tunnel SOON. No oncoming train, but just a long tunnel.

Best guess at this moment is that stomach acid reflux has caused or contributed to the inflamed airways and the sterile organized pneumonia (I can't define that one) and they are planning an endoscopy tomorrow morning. This is to further help diagnose her situation and also serves as a prerequisite to the Nissen (stomach wrap surgery). Her doctor plans to move that surgery up on the priority list with hopes that will alleviate many of her current problems. She has been taken off water and ice until that surgery is complete and proven successful. So, no food, no more water, no more ice chips and no more sugar-free hard candy until post surgery tests confirm she can tolerate liquids, purees, etc.

I have been told many, many times that you look forward to the blog and I want you all to know how much we look forward to your comments, cards, letters, emails and prayers. Thanks.

The Team is talking of release tomorrow, so we will wait and see but it doesn't make much difference, we are not going anywhere!

Not a Happy Camper Today

2007-08-13T21:18:00.000-04:00

Camp was not fun today!

Joy's day started with nausea, headache and vomiting and exacerbated by fumes from wax and stripping the floors in adjacent hospital rooms. It gave me a headache as well. Then the doctor tells her the Organized Pneumonia is significant in both lungs and her esophagus is inflamed and he is not sure what is causing it. The biopsy has not yet isolated the strain. They suspicion ed it may be acid reflux and ordered a barium swallow test which did not show evidence of reflux. The doctor is perplexed.

Then we had some issues over getting a face mask quickly for her CPAP machine since they have determined that the BIPAP machine is no longer necessary. Since her doctor is taking a cautious approach to determining the cause of the pneumonia and inflammation, he has taken away her ice chips and sips of water except for sips to take meds. Then during her discussion with one of the Transplant Team doctors, they indicated it may take up to six months to get feeling better. Her primary care doctor told her he may send her home tomorrow depending upon how her next chest x-ray looks and neither of us are necessarily happy about that because she still does not feel well. Some times insurance requires the "treat'em and street'em" philosophy so this could be the underlying reason to hasten her stay. The doctor says he feels she is at the point where he can medicate her from home and see her in Clinic for monitoring.

So, this was not a good day. Joy is ready to leave camp against all medical advice.

She remains critical of her decision to have the lung transplant and absolutely has nothing good to say about Duke. I still cannot blame her for the first part. All of this and she still cannot eat or drink for at least a couple months, requires stomach surgery, more days of hospitalization and more recovery issues. But, what is done is done and I just hope she doesn't give up. That, I am not sure of. We didn't know what we didn't know, so we must proceed.

Remember Roseann Roseannadanna (Lisa Loopner played by Gilda Radner)? "It's always something Jane". Tomorrow will be something else.

Improvement Noted

2007-08-12T20:47:00.000-04:00

After a little slower morning, Joy felt better throughout the afternoon but things like showering and walking are still a little tasking. She can tolerate those activities with minimal oxygen (2 liters per minute) and is improving each day. We walked a lot this afternoon and she did magnificent.

We do not yet know the exact strain of pneumonia she has and we are hopeful that additional lab results will be available tomorrow. Discharge day is unknown and they continue several antibiotic IV's, magnesium IV's, Chemotherapy IV's, tube feeding and of course the normal bowls of meds. She continues with a productive cough, which is good.

The nineth floor roof top helipad is directly across from her window so our entertainment for the day is watching the helicopters land and take off. Free and exciting entertainment!

Where Joy and Wayne Hang Out

2007-08-11T21:24:00.000-04:00

Dear Friends and Family,

We thought you would like to see some pictures where Joy and Wayne spend their days. The picture of the top is what is known as Duke South. That is where most of her doctors appointments take place. The one below this is the front of the main hospital. We all have spent many days and nights walking through those revolving doors. Joy was on the third floor in the tall building to the right. She had a great view of the picnic area. Don't think she ever got to see it, but I can vouch for the fact it was very nice. I wanted to give Wayne the night off, so Catherine will be presenting the nightly blog posting. I know I do not write nearly as well as him, so I promise not to keep him from his duties for too long. Joy's day was not quite as good as yesterday. She had a headache most of the day and also experienced what we call quite a bit of "productive coughing." Translation: When they do a lung transplant, most if not all the nerves are cut eliminating ones ability to cough. You have to re-learn how to do that. Although the coughing can be contributed to her illness, it is a really good thing that she is able to do this. Overall she has some general fatigue, but was handling all her medications very well. There was no news on the type of strain that she has and is expected to stay in the hospital a few more days. The temperature in Raleigh has been about 105 with a heat index of about 112. Y'all stay cool down there, ya hear!!!! Well that is about it for today. Thank you for tuning in to Words Of Joy From Duke. Until next time, y'all stay cool where ever you are and GOD BLESS. Catherine

P.S. Call me silly, but I have found if I click on the picture, they will open up bigger in another window.

Pneumonia

2007-08-10T21:52:00.000-04:00

Joy had another pretty good day which included some walking, resting and much needed sleep albeit hit and miss. You all know you do not come to the hospital to sleep.

The preliminary results from the biopsy indicate pneumonia and the doctor awaits further analysis to determine the exact strain. In the interim, they continue several antibiotics with plans to add additional meds when more lab results are known.

Hopefully, a few days of treatment will suffice and she can return home and back to rehab. She needs time to rebuild her strength and stamina prior to having the stomach surgery. The feeding tube is becoming sore but she is tolerating the "nothing to eat" program extremely well. She didn't know ice chips would taste so good. They removed stitches today from several sites but left the staples in her main incision, allowing for more time to heal. She is anxious to get those wire staples removed.

After talking to and coordinating information from three of our other transplant friends, I would say Joy's progress is on-track or slightly better than theirs. It is somewhat comforting for her to know that she is following a relatively common track although a rough experience at best.

Tomorrow is another day. Good night.

Joy Remains in the Hospital

2007-08-09T20:39:00.000-04:00

Joy had a very restfull night and slept the best she has in weeks. Early this morning, she had a lung biopsy surgical procedure and has recovered nicely. They removed a considerable amount of fluid and are awaiting initial lab results for preliminary diagnosis. Infection and/or rejection are probable, but time will tell. Until those results are known and specific treatments are determined, they are giving her several antibiotic and rejection medicine IV's. They are letting her bedrest with 2 lpm O2. Depending upon her status tomorrow, we will probably start walking the halls and I am sure this will further reveal how well she can tolerate activity once again.

Length of stay is unknown and will depend upon diagnosis of the problem and subsequent treatment. She has done everything asked of her and once again, it is the doctors time to fix the problem so we can move on. And, we are confident they will.

I met with our social worker today to discuss the pre-discharge education and the overwhelming issues that confront the caregivers. She asked me to prepare a detailed presentation of our experiences along with my spreadsheets, charts, necessary durable medical equipment and detailed memos and she will use this in her future support group meetings. If time and scheduling allows, she will plan her agenda to cover this topic while we are still here. My desire is to better prepare and educate future caregivers to minimize the tremendous responsibilites that await them at home.

Back In The Hospital

2007-08-08T21:52:00.000-04:00

All things considered, Joy had a reasonable day yesterday with excercise rehab and came home very exhausted, but as expected.

We awoke about 5' ish this morning with Joy experiencing extreme shortness of breath and difficulty breathing. We put her on O2 starting with 2 lpm and eventually increased that to 6 lpm when she de-saturated to 71%. She was somewhat stable then began an episode of considerable coughing (which is good) but this really took her breath away to the point she just couldn't breathe. Just as I was going to call 911, she began to slow down and I paged the Transplant Team and they suggested I bring her to the clinic for examination immediately. She was scheduled for an appointment tomorrow. They checked her over and quickly determined they must re-admit her but that the wait would be long today since the hospital was at 100% capacity. We arrived at the clinic about 11' ish and she got to her room at 7:30 PM tonight. Both of us are a little tired. I waited until they got the necessary histories, vitals, on-call physician visit, etc. and headed home for a little rest.

Very scary morning, for both of us.

Something that some of you that know Joy really well and know her love for Duke will be surprised, maybe shocked to learn that she hates the place and wishes she never heard of lung transplant. I could agree with her on the second part or at least for now. This is a very, very tough surgical process. But if we had not had it done and she didn't survive the year, then the decision would have been questionable. We continue to place her survival in the hands of the Duke Transplant Team and believe this problem can be fixed but selfishly, we want that accomplished sooner and without so much pain and discomfort. We saw one of our "new" lung transplant friends leaving today for home-home and his surgery was May 1st and he got along fairly well with only two re-admits for rejection.

My guess is that Joy has severe rejection despite the bunny medicine and the chemo IV she has taken. Bronc tomorrow (don't know if it will be biopsy--hope so) and some more tests, meds and stabilization. She has lost another 16 lbs since surgery on top of the weight she had to lose pre-transplant and is looking pretty good. Now, if she only felt that way.

Long day, good night.

Rehab Day One

2007-08-06T16:44:00.000-04:00

Joy had a two hour reassessment evaluation this morning at the Center for Living on Duke Campus and they will use this information to manage her exercise process over the coming weeks. We returned for a modified session this afternoon and she tolerated it better than she expected. Joy met a new pre-transplant candidate that started the process after Joy had surgery and he thought she was starting her rehab for the first time. She responded, " I am but this is my first day back after transplant". He was amazed and told her she looked better than a couple other recent tranplant patients that he had met. Hopefully, this will provide some inspiration to him. The only one that remains from Joy's original group is still awaiting a donor and has been on the Active list since February. She has been living here in temporary housing since that time, just like we are! Despite that, she is very positive and remains upbeat.

Although our daily schedule has not changed, we are finding ways to manage the process better and becoming more efficient. Other than providing Joy the supplies and equipment, she is doing the insulin testing and injections herself and Crystal is still coming each evening after work to administer the chemo therapy IV. This drug takes an hour or so to run so while Crystal stays with Joy to monitor the IV, I now use that time to run errands. While Joy was in rehab today, I stayed in the lobby in a big comfortable chair and even dozed off for a few moments. So there Laraine, I took a nap!

It is now 5:35PM and Joy is taking a well deserved nap but all good things must come to and end so I need to awaken her and serve her a gourmet meal and then Crystal can administer the chemo. What a fine life she leads, being waited on like this.

A Look at Our Day

2007-08-04T10:06:00.000-04:00

First of all, Joy is feeling better and gradually gaining strength. She wants to eat something or anything. Imagine that! She spends most of the day in the recliner and taking advantage of the weekend to rest prior to beginning her exercise routine at the Center of Living on Monday. We went to the clinic for blood draws and Pulmonary Function Test yesterday. She has a clinic appointment scheduled for this Thursday with various tests at 8:00 AM and then with a doctor at 1:00PM. A lot of hurry up and wait time with these appointments.

The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!

This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.

Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.

Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.

We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!

We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.

Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.

Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!

We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.

Thanks for listening. Now I must get back to work.

Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care

SHE'S HOME

2007-08-02T18:27:00.000-04:00

Dear friends and family,

We wanted to let you all know that Joy was released from Duke and arrived "home" at 2:30 this afternoon. She enjoyed stepping out into the sunshine and the fresh air for the first time in a month. We thought you all would enjoy seeing this picture taken of her this morning. Thank you all again for all your kind words, thoughts, prayers and best wishes. You all played a huge part in why she is where she is today. I know she is going to sleep good tonight. God Bless, Catherine

Homebound

2007-08-01T21:44:00.000-04:00

Joy was advised that she will be released from the hospital tomorrow.

Between the flurry of pre-release activity, Joy walked fourteen laps and would have been able to walk an additional four later tonight but was constricted by the nightly feeding tube and a couple last minute IV's. Ultimately, she could have made the ever elusive mile but we were satisfied knowing that it was within her grasp. She now has a new light weight walker added for stability and to carry O2, but we do not anticipate she will required the use of either for any extended period of time.

The day was almost overwhelming with scheduling and training for diabetes issues, home health care for feeding and new BiPap breathing machine, reviewing all the meds I purchased last night, getting new Rx for more meds and blood sugar testing, training on tube feeding and flushing those stomach tubes, wound care and probably more that I just can't remember. You just couldn't imagine what this day was like without being here. It was like learning to be an RN or Nurse Practitioner, all in a few fleeting hours. Thank God that Joy can participate in some of this. She gave herself two insulin injections today and performed admirably.

Tomorrow we start a new chapter. Coming home and getting settled in will be crazy and exhausting but once we get some routine and organization, I think we will be OK. She has a blood test appointment at the clinic on Friday, a doctor appointment at the clinic Tuesday which will encompass most of the day and Monday, she will be re-evaluated at the Center of Living Pepsico Building and begin the daily four hour exercise routine. She is so, so excited about that!

I picked up new meds tonight and last count was twenty-two daily meds consisting of sixty-two pills or doses.

Overall, the surgery expense will be about a half million dollars but her feeding tube will save on groceries for a couple months!

So, let's see what tomorrow brings.

An Afternoon of Progress

2007-07-31T22:09:00.000-04:00

The chronic diarrhea continued throughout the night and morning hours and had her totally wiped out which limited her mobility. Finally in early afternoon, she received a med that helped and she pushed herself to walk four laps with Kevin and me. Then late afternoon, Joy walked for the first time without the aid of the walker. Kevin and I lightly supported her on each side and pulled the walker behind as a back up. We walked three laps before returning to bed for early evening feeding tube and another round of chemo.

The Transplant Coordinators and the pharmacist were in today to talk more about going home issues including meds and home health care products and services. They still plan to train Joy and me on the insulin monitoring and injections and also how to clean and administer nourishment for her stomach feeding tubes. One of the Transplant Team surgeons indicated he was considering her for release very soon once these loose ends are finalized.

Getting her home will be nice but, the thought of not having the security blanket of the doctor and nursing care available as it is in the hospital makes us both a little anxious. This will be a big adjustment to say the least.

We are most appreciative of your cards and letters and thank you again for your thoughtful consideration.

Another Good Day

2007-07-30T21:08:00.000-04:00

Joy continues to deal with chronic diarrhea, the cause of which is unknown and remains a concern. She feels a couple particular meds may be the root cause but the staff is looking into a resolution.

No bronc today and she had the final two drainage tubes removed which made her feel better. She is still using the bipap breathing assistance machine at night and continues to receive nourishment through her feeding tube 6PM to 9AM each night, until she returns for the stomach surgery. Surgical biopsy may be this week or next which will hopefully determine the effectiveness of her rejection therapy.

She walked with assistance and some O2 three separate times for total of ten laps. Blood sugar continues to fluctuate but within manageable range.

They are considering sending her home possibly later this week, depending upon the diarrhea diagnosis and treatment and how much she progresses with the walking.

A women that Joy met in rehab also awaiting transplant, received her lungs a couple weeks ago and although she is progressing, she anticipates being in the hospital another couple weeks. Interestingly, her husband had a heart attack which required by-pass surgery and is now in the same room with her. "Ya think it might have been stress induced" ??????

Another Decent Day

2007-07-29T19:52:00.000-04:00

Her day was very much like I described in the last two days except that her walking was limited to ten laps. She was a little dizzy and weak this morning which shortened her overall walk time. They are giving her two diuretics, one of which is Lasik (sp?) and the combination really pulls the fluids out of her but fortunately, she recovers around noon. The continued chemotherapy drug may be impacting the fatigue type issue as well. Overall, I think she is progressing without setbacks or snags.....................................at least for now.

We have talked about her short term, day by day, one step at a time goals with her intention to wean from the oxygen and then the walker. Ultimately, just walking with me by her side for moral support and also being there as a backup.

Tomorrow, will probably see the resumption of the bronc, more frequent doctor visits (as opposed to the weekend), going home education, pharmacist, insulin staff and I am sure I forgot something else.

More Progress

2007-07-28T21:47:00.000-04:00

Today's blog will be shorter since Joy's day consisted of routine meds and in room testing and walking, much like what I reported yesterday. She walked fourteen laps today (4200 ft) in three sessions which is progress. One doctor indicated that she may have her final two chest cavity drainage tubes removed tonight or tomorrow. He said the rejection is still a major concern and next weeks biopsy will give them a clearer picture.

Plans for tomorrow will be the same, walk, sit up, walk, sit up and walk. One day soon, they may "show her the door". She can't wait, other than having to start physical rehab at the Pepsico Bldg in the Duke Center for Living Complex.

Still several concerns, but making progress.