Good News, Bad News and Terrible News

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

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)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Spine surgery scheduled for 12:30 tomorrow.

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

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

Remember "The Dime" ????

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

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

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........

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

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)

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

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

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.

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

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

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

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

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

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

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

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

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)

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

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

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

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

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

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

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

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

This chapter comes to an end.