MANY Questions About Transplants

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>supermanfan</b></i><br>Everyone... I think you are all freaking out over nothing<hr></blockquote>

I think we might be worrying too much. But we've never been there, and it looks frightening and you can't blame us for being afraid of it. At the same time, I really doubt we're freaking out over "nothing." It's still a big deal. We're probably just worrying more than necessary.

 

[IG]

I agree with Emily.. felt the same way before transplant. It's different once you've gone through it, it's hard to imagine a time when we were <i>that</i> scared over something we lived through.

 

[Lilith]

<blockquote>Quote
<hr><i>Originally posted by: <b>supermanfan</b></i>
Really, you are freaking out over nothing. What you have to ask yourself is if you'd rather die from a horrid disease, or live with new lungs. Plus, just remember that CF patients actually have a higher tollerance for pain.<hr></blockquote>

I'm VERY freaked out. Even if I don't feel the pain, my issue is those things are still there...under my skin and in my body! That's probably what freaks me out the most. And I don't know about the pain tollerance. Maybe most CFers are that way, but not me. I can't stand getting a blood draw let alone something like that. I squirm just from the fact that the needle is in my vein for however long. I'd prefer a knife stab, if you want to know the truth. Call me crazy, but at least that's in and out of there! I don't like foreign objects in my flesh for any amount of time, especially if they're stitched inside me. If I sweat just from a needle stick, I don't know what I'll do if I have to wake up and see that mess... On top of that I wouldn't want to twitch let alone move around for fear that I'm gonna dislocate something or I'm going to feel it move inside me... Call me a wuss, but I just can't stand it.

 

[IG]

Oh I totally know what you mean. Getting blood draws were h*ll because of that, I can't even stand to look at that when it's happening. That's why I was so adverse to getting the port in the first place. I mean to think about it... it's just icky and not natural. But something that kinda has to be done. The miracles of medical science. When I think about it in the abstract, that I have another person's lungs in me, it creeps me out, yes. But I don't think about it like that much now. I don't know who my donor was, I don't want to know, it's better for me to think about it as 'someone' but not somebody I know something about. Maybe one day but not now. As for now... I feel that the person who these used to belong to.. well sorry buddy but they're mine now. In me, have my blood, maybe I didn't grow them but mine mine mine. In the end they are yours and not somebody elses because they've given you the right to have them, to own them, to use them. Besides you can't feel anything, and the only thing you can see is the scar... which on me isn't very visible anymore.

Oh and Joanne, go ahead and use those photos if you want.

 

[anonymous]

I would want to be in contact w/ the donor family. What a bittersweet joy it would be for them to know that their loved one is living on through someone else & that that person was very appreciative of their decision to donate the organs--I'm sure that wasn't an easy decision for them to make.
If I lost a loved one and decided to donate their organs and any of the recipients contacted me to say thanks and also reported on how they are doing, etc that would make me feel good inside to know that something good came out of losing my loved one.
That's just my take on it--of course we all have different views and that's what makes life interesting.
Hope

 

[anonymous]

I would have to agree that when I saw them pictures it kinda scared me too, I was like man thats gotta hurt and after that I thought I dont think I would want a tx when the time comes (which I hope is a long time from now), but Im glad that you posted this Lilith cause again it has helped to hear the stories and know there is no real pain involved, and also Im glad I saw the pic cause now I know what to look for and know what to espect when ever the time is needed. Thank you


Jennifer (PrincessJDC)

 

[JazzysMom]

I also was a bit freaked. Not to the point of saying I refuse to do it, but enough that I definitely would think harder about it before saying yes. Of course I am not at that point yet in my health. As everything else that I was hesitant to do until I really didnt have a choice, I am sure if/when the time comes that I would choose it over what the obvious other selection is.

 

[anonymous]

I was just wondering after transplant can you still have alcohol? Not that I could live without it, it is just one of my things i like to go out and do with friends and family! Thanx!!!

 

[IG]

Really it's not encouraged since you're already on medications that can serious effects on your liver but they don't say flat out no.
The advice I got was 'use your head' [not that I even drink, or want to anyway]
Basically a glass of wine or can of beer occasionally is alright, but nothing more serious than that.

 

[anonymous]

The days of getting drunk are put behind you after transplant. I am still in college and like to have an occasional martini or screwdriver or beer...but only one that is it. What i was told is that alcohol messes with your metabolism and if you arent' metabolizing your anti-rejection meds properly then you may as well not even take them

Margaret
Double lung tx 11.11.04

 

[anonymous]

My center said that for each drink I have, I need to chase it with 8 ounces of water....

Most centers allow small amounts of alcohol, you need to ask their rules, not ours.

After tx, when I was still in patient... my 10pm meds arrived with a beer included, in ice.
I was to drink this before bed - to help me sleep and get me to poop. Lots of others have asked their surgeons if they can do that, but not one of them has been approved for it.

I hate beer! So to drink it down was a struggle.

The reason alcohol is bad for you post tx, is that it can damage kidneys. You kidneys are in jeopardy with the immune suppression drugs we are on, which can damage kidneys on their own..... and many lung recipients end up getting a kidney tx.... so they would prefer you stick to the kid drinks.

Joanne Schum
luckylungsforjo@aol.com