Clementine

Peanut's Stem Cell Tx

6 posts in this topic

i am sitting here in a quandary. when do you know when to go to the extreme and go for a transplant? I worry that I am not doing enough for my health...sitting here doing what I do best, blowing things off.

 

my motto is "life is good". but is it? I wish I were a dog.

 

tangelo

Share this post


Link to post
Share on other sites

Hi Tangelo,

I think everyone would answer this question differently. If I was to have exhausted all other possibilities for treatment or if the other treatments wouldn't work in a timely manner and my health was deteriorating then I would probably make the decision to do it. Many factors would come into play with the decision making process. All of the "what if's" would have to be examined. For me, I have a hubby and two young girls. If I did nothing, is it better than doing something? Lists of pro's and con's would have to be written out. I would seriously have to examine what my heart and head are telling me.

Although these decisions are never easy, the right one is usually made.

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Tangelo,

 

I met with 3 experts in the field of Scleroderma before making the decision. They all told me that I had a very aggressive disease process that was rapidly getting worse and since I was in the beginning stages of the disease they felt I needed aggressive treatment before it got beyond help. I am only 44, with 2 kids approaching college age and a family that relies on me. To be honest, with what I was told by the experts and my predicament, it wasn't a tough decision. I wouldn't even begin to think about taking the transplant road, however, without the advice of a Scleroderma expert and then a second opinion and possibly a third. Best of luck with whatever you decide.

 

Dave

Share this post


Link to post
Share on other sites

Jen,

 

How bad do you have to be…

How bad am I …

These were questions that haunted me for a long time.

 

In retrospect I realize information never hurt anyone. Researching transplant, talking to the transplant people, and even going for an examination isn't like committing to this drastic form of treatment. It’s just creating another option.

 

You don't have to be super bad to be considered for transplant. Actually me being super poorly make me high risk, which isn't the best. I think if you're a little earlier in the process your chance of a successful recovery goes up. It might be a good to go for an exam. You’d get a second opinion with experts in the field giving you a better idea of where you are at, giving a bit of an answer to: how bad am I?

 

And maybe if a few hundred dollars spend in visiting for the exam means peace of mind maybe it’s worth it.

 

I’m not trying to promote transplant I just wanna share information to create awareness. Knowledge is important, but so is finding peace within. Sometimes your gut, your intuition knows something the brain doesn’t.

 

No frets... No worries...

 

Hugs, broken peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hi,

 

I decided to go for it because of the unknown. I don't know in which direction this disease will progress and I am only 30. I can't live a life knowing this disease will always be causing me problems. I have faith that a stem cell transplant is the right thing for me... simply because it makes sense. I am not super sick, but have mild/moderate lung involvement. It is progressing and I want to be able to live my life... the way it used to be.

 

Good luck in your decision,

 

Denelle

Share this post


Link to post
Share on other sites

Here's a new bit of information I just learned today -

they've never done a transplant with lungs as bad as mine.

 

My lungs are worse than your Tangie... but not tremendously worse.

 

Hugs, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now