Home

Person A

Alpha's Web Sites

Alpha Atlas

Person B

Note: Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

The Alpha Liver Support Internet Mailing List, moderated by Jack Wilson (contact address spans@worldnet.att.net), recently conducted a survey of post-transplant list members, asking the questions:

1. What Are the Bumps in the Road You Overcame Post-transplant?
2. What Are the Good Things, High Spots You Welcomed Post-transplant?

The responses to the survey follow. As you read them, you will note that although there are bumps in the road post-transplant, the high spots prevail. The best thing post-transplant? LIFE!! Our transplant survey overwhelmingly reaffirmed that being alive is the greatest post-transplant high spot. Specific life events included:

• Watching a daughter walk down the aisle for graduation;
• Kissing a grandbaby;
• Being a catalyst to help others;
• A new awareness of life.
• A thread of awe, pulled together with hope and happiness, filled the responses.

Conclusion: Transplant equates LIFE!

Responses

Person A: Bumps

1. High blood pressure: I have to take two pills a day (on top of the others) just for that.
2. Flu-like symptoms: Another is that frequently (for a while it was once a month) I get sick for about 12 hours: fever and vomiting. My docs are mystified by it and have only seen one case like it. But my liver functions never change with it so they don’t see it as involving the liver.
3. Ear infection-swimming related: I get frequent outer ear infections which is very annoying. I’ve tried various things to prevent them, most recently silicone ear plugs.
4. Tire easily: I may get tired more easily than before, but I also exercise more than before and that could be the explanation.

1. Breathing and Eating
2. Family: My wife (she wants to know why eating came before her!) and children
3. Feel good: Feel 10 years younger; Nothing hurts
4. Being Normal: The transplant is over
   Except for a few pills, I am a normal human being with an increased appreciation of life.

Any of these early warning
signs may signal his presence. This guide may help you to identify a possible oncoming infection and afford you the opportunity to seek out the appropriate treatment.

Design by GatorGrafix

Person C

Person B: Bumps

1. Acute rejection on day 8. I’m told this is very common. Doctors weren’t concerned. Gave me antibiotics via IV for three days in the hospital, fixed the problem, and I’ve had no rejections since.
2. Dehydration. Doctors told me to reduce my fluid intake about a week after transplant. I overdid it. Blood pressure dropped to 70/40 and I could barely keep my balance. Got fluids via IV and had to stay overnight in hospital for observation. Doctors told me to drink at least 8 glasses of fluids every day and I do and I’ve had no dehydration since.
3. Low red blood cell count. Count was normal on transplant day and has been low since transplant (16 months now). I’m bringing it up very slowly with iron supplements on doctor’s advice. At the rate of increase, the process may take three years.
4. Paleness. Don’t know why, but the sun does not seem to make me tan, even red, since transplant. Weird. I’ve been off bactrim, one of the medications which causes this, for 10 months now.

1. Feel great
2. Exercise
3. Gratitude to Alpha network
   Same mortality curve as general population.
4. Every day has been wonderful. No viruses or infections whatsoever. One bout with rejection on day eight-Docs were on it immediately and fixed in three days. I never felt a thing.
5. I’m doing aerobic walks two or 2 ½ miles every day (some jogging necessary to keep my heart rate up) and it feels great.
6. My thanks again to the Alphas on this network who gave me hope and encouragement to get listed and go through the transplant. My serum level is now normal. The progression of my lung disease has been arrested, and I live a perfectly normal life with the 56% lung capacity I have left.
   Doctors say that I am now on the same mortality curve as the rest of the population.

Persons D & E

Person C: Bumps

1. Pancreas problems: Pancreas not working well for three months after TX. Had penitential drains and gave myself shots for 3 months to correct the problem....potentially major complication.
2. Blocked bile duct: partially, after 6 months . . . ERCP fixed the problem.
3. Shingles: Contracted shingles because of suppression dilemma...In the hospital for three days.
4. Colds: Once a year, 30-day colds.

1. Exercise
2. Thankfulness
3. Reduction of transplant meds.
4. Started swimming 10/98. Terrific test since then. Enjoy life every day. . . . I swim laps for 40 minutes every day . . . swimming is the answer.
5. Incredible relief from pre-transplant physical and mental purgatory.
6. Incredible sense of accomplishment of overcoming seemingly insurmountable physical problems.
7. Reposition my life for total good; thankfulness.
8. Things are going really well. The meds are much better....I’m down to 10 mg of prednisone per day and they’re hoping to have me off it completely by the end of September. I’m still on 250 mg of Neoral 2 x day, as well as the study medication I may or may not be taking. I take Zantac and Septra...but these will hopefully be things of the past soon.

Persons F & G

Person D: Only High Spots

The “Post-transplant good things” list is endless, but here are a few of the top ones:

1. Swimming: The best news from my doctor was that I could start swimming! We’ve had an incredibly hot summer here and I have gone crazy having to take my daughter to the pool to just sit and watch her swim with her Dad. We’re going to a friend’s cottage for a week on Monday, and I can’t wait to get into the water too. I still can’t believe that we’re going away...it’s been two years since I was out of the city..and yes, I’m starting to feel like a "normal" person again. It’s a great feeling.
2. Enjoy life and family: Life!!...feeling a new sense of freedom and a chance to do the things that are really important...without the constant fatigue and other problems that comes with serious illness....being able to be the Mom, wife, daughter, and friend that I want to be.
3. Normal life: Being able to return to a "normal" life...no pager, no constant worry, a feeling that I am in control of what I want to do and that I will be able to physically do all the things that I want.
4. Exercise: Exercising how and when I want to.
5. Ability to travel: Traveling where and when I want to.
6. Life!!!

Person E: Only High Spots

1. Enjoy family traditions: On June 21 of this year I accomplished a feat my doctors told me I may never do when I was diagnosed. I watched my daughter walk down the aisle and receive her High School Diploma . . . in four years I AM again going to watch my daughter walk down the aisle and receive her College Diploma, along with watching my son walk down the aisle to receive his High School Diploma.
2. Enjoy children and grandchildren: I will someday be able to hold my first born and my last born grandchild in my arms.
3. People met during the transplant process: I have met some wonderful people through the transplant clinics and on the Alpha site, and I hope they will remain life long friends.
4. Helping others through my experience: I have learned that I can help people through my experiences.
5. Ironically, feel blessed by being ZZ: I have also learned that, and this may sound stupid to some people, but I have learned that even after everything I have been through, I am glad that I was the one person in my family to be "Blessed" with the ZZ genes. Why? Because I know now that no one else in my family would have been strong enough to fight and survive.
6. Being alive!!: Lastly, the best thing about TX is, I AM ALIVE!!!! and able to send you this email.

Person F: Bumps (from parent)

1. CMV: CMV five weeks post tx. Months and months of Gancyclovir.
2. No blood flow in liver: Couldn’t find blood flow in liver 2 years post tx. They weren’t looking in the right place. They eventually found it.

1. He is alive!!!! He is healthy!!; He is happy!!; He is a normal kid!!: I guess that is about it. We have had very few post-tx problems. I guess we made up for that before TX. He was in a coma for five days before his transplant with kidney failure and everything else that goes with it and he woke up just hours after the transplant and had had no lingering problems. He is now almost three years post TX.

Person H

Person G: Bumps (from parent)

1. Vomiting blood: About 4 days after transplant, started vomiting blood (really scary). They thought maybe he had developed varices and they had burst. An endoscopy proved that theory wrong. We found out it was from the stress of the surgery; that the stomach lining was raw and he had to take carafate to help that
2. Blood clot: About a week after TX, developed small blood clot, and had to have that surgically removed.Both of these incidents happened right before we were to move out of the PICU. This was very disheartening for all of us.
3. Rejection: Minor rejection requiring brief hospitalization about six months after tx. Required massive doses of steroids (which caused a lot of swelling, very embarrassing for a preteen).
4. Spleen removal: Had to have spleen removed four years post-transplant, as it never returned to normal size and was “eating” all the good blood cells.

1. Healthy
2. Appreciation of life

Person H: Bumps (from parent)

1. Drug reaction: Neuro-toxicity reaction to IV prograf post-tx days 3, 4, 5. Had aphasia (no speech) and limp hands-we were afraid he had a stroke or something.
2. Unprepared for impact of procedure: Parents possibly underprepared for post-op recovery—we had no idea we would need PT/OT to get the patient up and moving! Barely walking at all when discharged at 23 days post-transplant. (love that stroller!).
3. Sleeplessness and hyperactivity: due to side effects of probably prograf and prednisone. Agitation, screaming and kicking during the night-possible nightmares. Hyperactivity, more aggressive, whiney-out-of-ontrol-must have been the prednisone.
4. CMV: This is a bump in the road, but naturally was more complicated than I expected since we do not live near our tx center. Needed PICC line and IV gancyclivir treatment, home nursing care to teach Mom, site got infected and had to have line pulled at least a week early. Will test for recurrence of virus.
5. Rejection: Possible small rejection past few weeks requiring a prednisone pulse last week (3 days) and then tapering doses of prednisone back toward where they were-will take at least couple more weeks.
6. Exhaustion post-transplant: Patient obviously not sleeping enough to be a cheerful boy at least first few weeks on heavy steroids, plus caregivers definitely exhausted since they don’t have as much energy as the 25, 30, or 35 year old parents (ha ha ha)!

1. Improved hearing and vision: My hearing and vision improved markedly following transplant. I stopped yelling at my kids about their "mumbling" and I had to get new glasses.
2. Just adding things up to make a life!: What is the best thing about transplant? Learning to sail? Catching the biggest fish of my life? Being at the leading edge of a new technology (not the dying tail)? Spending the last year my daughters have at home running around with them?The best thing is adding up lists like this until it equals a life.

Top

Updated May 25, 2005