AM I GOING TO HAVE A NORMAL LIFE AFTER LUNG TRANSPLANT?

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Permalink Reply by Janet Leaf on November 3, 2009 at 4:18pm

Hi Mel: I had a single lung transplant on June 23, 2009 due to a genetic disease - Alpha1 Antitrysin Deficency. I had been on 02 for several years and was limited to what I could do. Two days after transplant, I was walking around the ICU with the help of a chest high type walker type thingy and never looked back. IT WAS AN ABSOLUTE MIRACLE!!! I spent 9 days in the hospital, came home and started doing a little bit more everyday. One thing I find hard to believe is that I can eat a big meal, get up from the table and walk up a flight of stairs. Before TX, that would have been impossible!! I feel like I can now do whatever I want. Only problem was that I suffered a compression fracture in my lower back in Sept and that sidetracked me for a while (I have osterporosis) and taking the steriod - Prednisone doesn't help the bones any. I take 17 1/2 pills am and 10 1/2 pills pm, but you just have to stay organized with a giant pillbox and go with it. It becomes very routine. You appear to be very young (I'm 60), so if I were you I would welcome the transplant with open arms and really LIVE again. God Bless and take care. Janet Leaf

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Permalink Reply by mel mac on November 3, 2009 at 4:52pm

thanks janet....these are the stories that keep me positive!!

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Permalink Reply by Jill Roberts on November 3, 2009 at 6:48pm

I had my double lung transplant 12 years ago for CF. I just had my yearly tests done at the transplant center yesterday and everything turned out great. I live a wonderful life. I am married and although I don't have kids, I have two dogs and a cat. I graduated with a master's degree in exercise physiology (after my transplant) and work full-time in cardiac rehab. I travel the world and do things that most everyone does with some precautions...hand washing before eating for example. I would do it all again in an instant if I had too. I do not regret my decision. I am very active... I exercise daily in addition to walking my dogs over 3 miles a day. So, it is possible for you to get back to work, ride your bike and be there for your son. Don't dwell on all that can go wrong, instead dwell on all that can go right!!!!

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Permalink Reply by mel mac on November 3, 2009 at 6:59pm

thanks jill.....i can't wait to do those things!!!!!

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Permalink Reply by Jerry Freeman on November 4, 2009 at 11:55am

Hi Mel.
I had a double lung transplant in April 2005. I am able to do anything that anybody else can. I just turned 69 and I actually feel better every day. Don't worry you will be fine and never miss a beat. Good Luck

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Permalink Reply by Tara on November 4, 2009 at 6:57pm

Hi Mel,

Everyone has a different journey when they receive new lungs. Mine was rough at first but it only got better. I was only 11 years old when I got my new lungs for cystic fibrosis. I had never had a "normal" life before my transplant because I had always been sick. After I got my new lungs. I could run, (I joined track in 8th grade) I could dance! (I took tap for 11 years and was on the basket ball and football dance teams all though high school). I graduated high school. I got married! I got to meet my niece and nephew. None of this would have ever happend with out my new lungs. Currently I work part time and I do enjoy life. This Christmas Eve I will be 18 years post double lung transplant.

If you have any questions feel free to ask.

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Permalink Reply by Selma Tennant on November 5, 2009 at 9:32pm

Hi Mel: I had a single lung transplant 15 years ago this past May. I was diagnosed with BOOP (Bronculitis Obliterians) caused from RA. My native lung is really no good and the transplanted lung is doing wonderfully. I have had a few rejections and some minor infections but I have been able to do any and everything I want to do. I am married with two grown daughters and one grandson. I think you should go for it and don't look back. It will be the decision you'll ever make. Just stay positive and do as the doctors say and you'll do GREAT. Good luck to and your family. Oh another thing family support is one of the most important thngs to help you through this process. It helps so much. Feel free to ask any questions if I can answer them for you I will.:)

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Permalink Reply by Richard MacIsaac on November 13, 2009 at 10:05pm

Mel,I'm not sure what your getting a transplant for but if it's cystic fibrosis,I can tell you that,hell yes!!,life will be better after a double lung tx.I was 47 when I had a double lung tx.There's no doubt that the first couple weeks are rough.I mean rough.But little by little you start to get back to normal.Before you know it,it's like 1 month,2months,3months ago I had a tx.You get into a routine with the new meds and time schedule.Before my tx. it took me forever to get dressed and ready to go somewhere.I went through endless hospital stays.I had oxygen 24 hrs. a day, lugging around tanks,tubes all over the house.Believe it does not take too long to forget about that.It seems like forever ago.You'll be able to do what you want,when you want.I wouldn't read too many horror stories about other people's misfortune.Try to have a positive attitude that you can do it,you won't be stopped.You can be healthy again.You can do it.It is truly miraculous what these surgeons and doctors can do.My sister and I have both had lung tx.It's been hard but not that hard.It's way better than cf.I've been able to see my daughter graduate and go off to college and my wife even went back to school to be a respiratory therapist.My only suggestion is that post transplant,you will need someone with you continuously in the hospital for the first few days.It is really comforting to have someone with you early on in the healing process.Good luck.I

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Permalink Reply by mel mac on November 14, 2009 at 6:54am

thanks richard and everyone for the positive words!!! It seems just when I get into a rut and thinking about it all....I come on here and it brings me around. To be honest...I can deal with the transplant. The family fighting and issues over fundraising etc is the hard part of all this. Everyone has my "best interest" in mind
but I have no input. I just want to be surrounded by positive people...go get this done and keep on trucking!!! I understand that people deal with their own things their own way....but fighting over money in a time like this seems odd to me. But I will continue to stay positive, focus on that, and get through this!
ps.....I have systemic scleroderma,,,,but pulmonary fibrosis is the lung disease....very much like cystic fibrosis...but acts faster
have a great day

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Permalink Reply by Kathryn Flynn on November 14, 2009 at 2:37pm

Hi Mel,
Life is about change and how we handle it. It is never stagnant. That said, if by normal you mean having a family and a job, yes life can be normal. But it can also be better than normal; stellar even. Transplant can be an opportunity to do things you never thought you were capable of, a time of examining your life and values, and it can be fun. I hope you try to look forward while you wait to a richer life. My daughter was barely 4 when I had my transplant. Sje is now 17 and in her senior year of high school.

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