Not the most popular transplant

[Kathryn]

Hi-
Sometimes lung transplant recipients and I am sure intestine recipients feel like second class citizens in the transplant world. None of the medications we use are FDA approved for lung transplant. Research on chronic rejection also isn't funded as often because, face it, our numbers are too small. How do you feel about this issue, regardless of your original transplant.

[Mary Jo Lovely]

Thats so true Kathryn, I was second class citizen from smoking and now its like I am still that way. When people ask me why I needed a lung tx its embarrassing for some reason to say emphazema. And to be on oxygen was no better, especially when you go to a place like Disney the happiest place on earth. People have nothing to say so they say stupid comments.

Funny though you would think liver would be right there with us lungs. They get a bad rap for drinking.

MJ

[Kathryn]

Just say you had COPD. There isn't enough awareness and people won't know what that means. It is nobody's business that you used to smoke. We all make stupid mistakes when we are young. My lung transplant was related to smoking as well. I quit at 26. DX with pulmonary langerhans cell histiocytosis at 29. Now Duke says pulmonary fibrosis. Either way- it was because I smoked. People used to yell at me for parking in handicapped spots when I was on oxygen (for 8 years). It's just ignorance.

[Mary Jo Lovely]

A positive that came out of my surgery was my one daughter who smoked quit the day of my TX. My other 2 children never started.

I wish I could have quit back then, not that I haven't tried. I have an addictive personality so it makes it hard to quit.

I have my surgery and there are days that I can barely walk so on days like that I will use the handicap parking other then that I try to walk as much as possible. :)


MJ

[Kathryn]

My brothers quit but my nephews mother continues to smoke and my nephew started in college. He is trying to quit (He's 25) since his Dad was recently diagnosed with COPD.We obviously have a weak heritage when it comes to lung disease. Perhaps if my transplant hadn't gone well after the initial rough start he wouldn't have started.

I don't really have an addictive personality but when you start smoking, it is hard to quit.

[Mary Jo Lovely]

We have the same thing here. My mother had the same as me, but she was never offered a transplant. She lived on oxygen for many yrs. I should have quit back then.

Oh it sure is hard to quit, I am just happy that I did.

[Kathryn]

Hi Mary Jo-
I smoked as well. I'm not sure you need to answer that question with a disease when a description would do. People are so judgmental. I think we get short shrift because there are so few of us. It's hard to make a big splash with a small group.

Kathryn

[Ashley Curran]

Hi Kathryb!
I am NOT a TP recipient or candidate, but my husband needs a liver TP, and I can understand how you might feel, though I am not you, and I applaud your courage for both becoming a person who goes through the transplant process, which I have found is WAY more daunting and long, and scary than I ever thought possible, then your recovery afterwards, also a huuuge life changing event, enotionally and physically..
I also applaud your courage to speak up about funding, and research, and your FEELINGS, which in fact, is very hard for most people to do!
My husband used Intravenous Drugs over ten years ago, and got Hepatitis C from a dirty needle.
He has and is going through issues of guilt over the fact that there are sick people who did not do anything "wrong" and need a liver, and he may get one and they may not, and that scares him and gives him a feeling of being a "loser".
There ARE some in the TP "community" that DO consider certain recipients or candidates or even certain TYPES of transplants as "second class citizens", but those are the people who have forgotten what a transplant really is, of any kind.
God opens up somebody's soul, and allows either them or their family to extract PART OF THEM, to give to ANOTHER and keep that person alive! That is a miracle and a BEAUTIFUL thing for humanity!
When we remember THAT, what other people do and say is not applicable to US!!!
A GIFT OF LIFE IS A GIFT OF LIFE...no matter where it came from, or who it goes to, it is a miracle!
BUT, the funding, and research of certain types of transplants and medications relating to those IS something that is an absolute shame.
Just because a "few" people had AIDS, nobody thought to research and investigate it.
Someday, I hope to live in a world where politics and healthcare don't live on the same street.
Best Reguards,
Ashley Curran

[Kathryn]

Oh- me too. I am so sorry to hear your husband is struggling with guilt. My sister-in-law died of liver failure- it is possible it was from i.v. drug use but more likely from a massive transfusion in Mexico about 30 years ago. Her center jerked her around. I had finally convinced her to change when she ended up in ICU and ultimately died of pneumonia. Tell your husband from me no one is perfect, we all have done things we regret, and he deserves to live!

[Ashley Curran]

Thank You SO much Kathryn,
I DID tell Peter that, and he said "That helps so much to know there are other people out there who feel exactly like a "second class citizen".
Even on some of the TP group sites, it is hard because I know a lot of people say that they have "Auto-immune Hepatitis C, and I COULD choose to say my husband does, and that would be the "path of least resistance". but I have never been one to sit down and shut up.(gee, can u tell?)
My Dad said I would have been a good Civil Rights Activist, and I told him "Well, there is still time!"
LOL
The COPD thing though, I think that is a good idea, because you would not be lying (this is to Mary Jo) and mabye somebody would actually LEARN something.'
If that doesn't work, tell them to buzz OFF because they are taking up your AIR, (LOL.but I am NOT laughing about COPD or any kind of respiratory disease etc.)

I have COPD myself, and I am only 36 years old. I WILL die before the age of 50 if I don't stop, but I have quite EVERY DRUG on the PLANET but I just cant seem to get a handle on this one!
They should have "Smoking Detoxes" just like they do for EVERY other drug, even legal ones like Alcohol.
Just to get like, a week under my belt would make a huuuggee difference.
Sorry I am rambling.
Peace and Prayers to both of you ladies..
Ashley (from Boston MA..)