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Post-transplant Bumps in the Road and Rewards: Part 11

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• Andrea Aulbert, birthday 2/7/67 (DECEASED) double 10-98 UAB
  Alexandria, VA. Age 31 at transplant. Out of the hospital in 10 days. 3 bouts with rejection and 2 with CMV. The first two months after transplant were tough. I struggled with depression (probably from meds.) Feeling great these days! The rejections were diagnosed by bronchs and I didn’t have any symptoms. (my pfts were fine). They were all diagnosed as grade A2 - which is rather low. The first two were treated with solumedrol. The third rejection, they gave me solumedrol and OKT3. It was awful (I am also a cancer patient and I have to say it ranked right up there with chemotherapy.) I took it for 5 days, and as soon as I was done, the side effects went away. I had my first bout with CMV about 3-4 weeks after transplant. I ran a fever and felt as if I had the flu (not fun). They put me on three weeks of IV gancyclovir and an additional three weeks of oral meds. No real side effects, a little stomach discomfort, but not too bad. I felt better after a couple of days. The second round came after a rejection episode when they gave me OKT3 . (same symptoms). This allowed the CMV to kick back up. Back on the IV drugs. I was not hospitalized for any of the CMV. I was CMV positive and my donor was negative. I take 10 mg prednisone every day and have no side effects from it. I haven’t had any problems with rejection since May. Bronchoalveolar carcinoma (BAC) Note: Cancer is a risk factor with transplant. Pre-existing cancer can be a problem.
  
• Richard Baker, age 64, 2 great Lungs, transplant 11/24/98, Barnes Jewish Hospital, St. Louis
  On waiting list for 22 months. St. Louis it an Uneventful Bi-lateral Lung Tx. I was in Hosp. 9 days. 1 bout of rejection one month out, 1 bout of C.M.V. virus 3 months out. Only problem I have is my back from setting in the recliner for 2 years while on O2-24-7 at 4 to 6 Ltrs. With help from the Man upstairs, a wonderful and Brave Donor family, and the best caregivers anyone has ever had, I’m able to do a lot of things that a year ago I would get tired just thinking about. Emph./COPD.
  
• Carol Brooks, Rt. Lung Post Tx. 5-13-99 U. of Mi., waited 4 yrs.
  No complications due to lung, no rejection. Did have fluid around the lung and had it drained twice. Did have major reaction to Cyclosporin and taken off. Only other problem was the gall bladder and had that removed last week.
  
• Steve Bunsen, Smithfield, NE , 7 1/2 yrs post-transplant, double lung Barnes #119
  Living life to it’s fullest!!! Diagnosed as an Alpha in 1988. Evaluated in St. Louis summer of 91. I had FEV1 of .48L (less than 10% function) and was told that I had about 18 months to go if I didn’t get a tx. Listed the end of August 1991, got the call on March 19, 92 (no dry runs!!) Was in the hospital 19 days. I spent 10 weeks at Barnes after the tx. Eleven weeks after my transplant, I was back in the tractor replanting corn, and haven’t looked back since. I have had only a few episodes of rejection, none severe. I have had a couple episodes of walking pneumonia and some bronchitis. but have weathered the storm. My biggest problem is with weight gain. I have put on about 80 pounds and am having a hard time getting rid of it. I would not hesitate one minute to do it again if I had to. Being confined to a wheelchair and tethered to an 02 tank isn’t much fun as many know! I am able now to live a normal life again (as normal as possible with meds etc). I can climb a flight of stairs again. There was about a two year stretch that I could not even think about stairs without becoming short of breath. If I get short now, it is because I am doing things that give good cause for it. One thing I want to stress is exercise. I know how hard it can be, but do what you can to stay active. I tried to continue farming right up to the time I went to St. Louis. I thought that the physical activity would help. I found out I was right, but there were a lot of things that I should have been doing that I wasn’t. I was in fairly good shape, except for my bad lungs. I am 47, married with four daughters. Became a grandparent for the first time a week ago. Have a healthy grandson! I hope I continue to do well so I can see him grow up! Have a new goal now. The first one was to walk the girls down the aisle at their wedding. Have part of that one accomplished! Life is great again! I live each and every day to it’s fullest. I hope this helps in some way.
  
• Julie Dumayne, Post TX (Heart/Double Lung), 2 June 97, Harefield, England
  Paralysis of Left Diaphragm/Low PFTs. Chronic rejection first year. Have gained lots of weight. Severe Osteoporosis / 2 inch height loss. Glad to be alive! PPH.
  
• Karen Fitchett, age 43, Transplant 7/2/96, Center University of Michigan
  Listed for second transplant since 1/14/97. Had a lifeless lung installed and wasn’t expected to make it. After fighting for my life the first month and fighting for my health for the next 2 years I am doing better than I have in a long time. Transplant was supposed to be a double, but because of the complications I received one lung and the other lung was reduced, both surgeries at the same time. Now they will transplant the native lung so I will have two different lungs from two different donors !!! I still have a collapsing airway and will not allow a stent to be put in. I have never had rejection. Alpha One Antitrypsin Deficiency.
  
• Kathryn Flynn, Double lung Tx March 25, 1996 at age 38 Duke University Medical Center
  One episode acute rejection about 2 weeks out. Eleven days on ventilator after surgery with subsequent ICU psychosis. 3 or 4 bouts of CMV (mostly asymptomatic). 1 case of bronchitis. 1 hospitalization for allergy, 1 for stomach flu. Feeling wonderful. Swimming in the Transplant Olympics games again this June. Histiocytosis X.

• Kathryn Foss, Double lung tx 5/22/99 at University of Minnesota
  No problems (since leaking aorta on day 2), no rejection. Playing golf by mid July (walking the course), playing VB, walking, riding  bike, basically whatever I want to do, I CAN! Life is GOOD!! Alpha 1.
  
• Terry Glenn, Seattle, birthday 3/25/51 (DECEASED), current age 48, age at tx 46
  Right lung TX Sept. 26th, 1998, University of Washington, Seattle: On the list 9 months, in the hospital only 13 days. 1 case of rejection—month out. Three cases of CMV in the first year. No CMV since Aug 1997 ! Weight gain. Hair growth..I mean big time hair growth! Memory loss. Long term is okay..short term .. well I repeat myself. Blood pressure is higher than it used to be. (Take a pill) cholesterol is up. (Take a pill ) calcium is low ( take a pill) Liver... blood tests are up (Stop taking 4 pills) Test low (take 4 pills) Water retention!!!!! big time! Take “PP” pills. mood swings “Exorcist style!!” Take 2 pills for that! Thank God for “HAPPY PILLS!” numbness in right breast . . . still after 2 years. And with all this, I say every morning, Thank you to my donor family and the Good Lord for every breath I can take now and my “new” life. IPF.
  
• Kari John (DECEASED), single right lung txp, September 30, 1994, UCSD Med Ctr (San Diego)
  I had 1 nasty episode with CMV 2 months post-txp. Now after 4 stellar years of feeling great, I’m currently in chronic rejection and have been for a year.
  
• Debby Gerou Ray, Seminole, AL A1AD-induced emphysema, Rt Lung 5.30.00, Univ of AL- Birmingham
  As for my txp . . . well, I like to call it my “Good, Bad, and Ugly.” I started out GREAT . . . out of hosp in 6 days (GOOD) and just hummin’ along for about 2 wks when I had my first bronch and “minor” rejection (BAD) which they say everyone has. OK, so treated for that but then started getting MAJOR gastro reactions to the meds (BAD)...MAJOR pain in the gut! After an ultrasound, an endoscopy, and an ESRP (if I remember the name correctly), they “cleaned out” my gall bladder (UGLY) and so by the 5th wk I was back doing well. A LOT of pain (or I have an ultra low tolerance as some folks want to say!)...whatEVER, a LOT of pain (BAD)! Then my second bronch and still had “minor” rejection (BAD). ho hum...another Solumedrol treatment (UGLY) AND a change in my meds from cyclosporine, which was maxed out but not working, to prograf (GOOD). In the meantime, I gained 15 lbs (UGLY) and have MAJOR hair growth (UGLY)...had to have my face lasered ’cuz I was growing a beard! YUCK! My arms are COVERED with thick new hair..so’s my chest, etc...it’s very rude! 3 months later, I’m going for my 3rd bronch in 3 days and have had such low levels of Prograf since they’ve been adjusting it only 2 pills a day each weekly blood test (I’ve gone from 6/day to 14/day and my levels are STILL too low!!!!), that I KNOW I’m gonna still have rejection. Now, if my PFTs fall, then I’ll have to stay for SOMEthing...don’t know yet what THAT treat will be..ha! SO, I haven’t had the trouble SOME folks have had but I’ve had my share. BUT, my FEV1 is almost 70% which is REALLY cool (GOOD) and I can do just about ANYthing I want within reason (GOOD)...breathing is a breeze (GOOD)...ha! Was it worth it? If I live past 6 months...ABSOLUTELY. Would I do it again? ABSOLUTELY. That’s NOT the end of the story, nor is it the WHOLE story...there have been OTHER “little” things but those are the high points...ha! I’m “doing” fine and hoping we get all these stupid bumps straightened out!

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Updated May 24, 2005