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nkmommy 02-18-2010 02:58 PM

Pre-Transplant patient
I really need some help/advice for a place to go for online support for Pre-lung transplant patients. I will try and be brief..but unfortunately my history is a difficult one. I was diagnosed with Stage II Hodgkins disease at 18. Had a year of chemo and 8 weeks of severe radiation to my whole body. I went into a year of remission. But then after that year was up..I was diagnosed with Stage IV Non Hodgkins Lymphoma in my lung. I had an Autologous Bone Marrow Transplant (my own marrow, not a donors) and after 6 months in the hospital, I have been in remisssion ever since..:cool: Over the last 15 years, I have had one health crisis after another..everything always led back to either the chemo or the radiation (gallbladder and left salivary gland rmoved, Cardiomyopathy and a pacemaker put in, Sleep Apnea, on Bi-Pap machine, way early menopause, my stomach does not digest food properly, and deterioration of my lower back..2 spinal fusions with laminectomys and in need of a 3rd!) and I am on over 15 different medicines daily to keep everything under control.

Now..I face the worse yet..over the past year I have struggled to breathe..very short of breath. I have been in the hospital twice for a total of almost 7 weeks, and up until recently, all the doctors thought it was my heart. After some new meds, I met a wonderful pulmonologist, who FINALLY took a sincere interest in figuring out my problem, and did not run, because I was "too difficult a case". (at one point I truly wished there really was a "House" that existed, like the tv show..he would have loved me!) After many scans, x rays, PET has been determined that I most likely need a lung transplant. I go tomorrow to Columbia Presbyterian for my initial interview..for medical history, financials..etc...I don't really know why, with all my past health history, this time I am truly petrified! I never once ever said "Why me?" I always had a positive attitude..this is different and I cannot figure out the reason! Ever since I was told "lung transplant" and received the packet (more like a small novel) from the hospital to read before my interview, I have been scared and worse yet, very depressed. It could have to do with me worrying about my 6 year old daughter...I dont know.

Anyway..again...sorry this is so long..but any advice as to where to go for online support..I would appreciate!

rmc20021 02-18-2010 03:16 PM

Re: Pre-Transplant patient
I don't have any answers for you but just wanted you to know that someone is listening. I posted on here with my own concerns a day or two ago and although I see a few dozen read the post....nobody has responded. I hope everything goes well for you and that you find the help you need. It does sound as though you have at least found a doc to listen and that you are on your way. Again, good luck....

nkmommy 02-18-2010 03:30 PM

Re: Pre-Transplant patient
Thanks for "just replying" it really means a lot to me to have someone listen to me..especially during this hard time!

hypatia 02-20-2010 02:12 PM

Re: Pre-Transplant patient
You have had more than your share of medical issues, nkmommy, and I hope you will pursue the transplant option. There are a number of forums/boards strictly for transplant patients on the net (try second wind).

My best friend was 56 when she got her double lung transplant and I was her caregiver. It's been three years and she is doing very well. At your age, in spite of your history, you have have an even better chance of a good outcome.

I hope you will come back after your evaluation and let us know how it went.

writeleft 02-22-2010 06:11 PM

Re: Pre-Transplant patient

Your post caught my eye, because I have a friend who has gone through lung transplant, and I will ask him to post a reply to you.

Best wishes..

nkmommy 02-23-2010 03:20 PM

Re: Pre-Transplant patient/chemotherapy related lung disease
Hi again
well here is the update and now I am ready to lose my mind!! I went on Friday to Columbia Presbyterian in Manhattan and met with the Lung Transplant team. Well after 5 hours of intense medical history and education on the transplant itself and how it pertains to me, I am not going to be a candidate for the transplant. The lung transplant is the worst transplant out of all the kinds you could have because they are exposed to the elements and our terrible environment. The statistics are horrible and my chance of survival is slim to none, with all of my health problems that I have, I would be lucky to make it off the operating table alive!

I have "chemotherapy related lung disease" and the Dr said he does not know how long I have to live basically. He is recommending pulmonary rehab and a change in my medicines for the moment, but after that he has no answers...this is a top Dr in his field so I feel really at a loss and terribly scared. Does anyone know anything about chemo related lung disease? If so..please advise me.

Thanks so much for any guidance and advice:wave:

One Lunger 02-26-2010 09:02 AM

Re: Pre-Transplant patient
Im sorry to hear about your problems after reading your post I thought it might be iffy
for a lung transplant. I had one five years ago and surgery was pretty rough.
Here are two drugs I was taking before my surgery that helped keep me alive
Advair 500/50 and Spiriva plus the dreaded green bottle of O2. Do you know what
your lung function numbers are this you need to know. If your numbers are to low
your heart has to work much harder witch can cause more problems and if they get
lower brain damage I think its called oxygen deprivation. I wish I had some good news
but theirs really not Im sorry. The best thing I can tell you is be real proactive with
your doctors and exercise as much as you can it makes a huge benefit to the quality
of life you have left. Again Im so sorry if I can help answer some of your questions
Id be glad to. Keep your chin up and live every day as if it was your last.

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