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recovery after transplants
- Thread starter anonymous
- Start date
I
IG
Guest
I had complications following tx that lead them to put me to sleep for a week, but it was maybe a week and a half after I was woken up that they kicked me out.
I had my tx on June 18, 1996 and by July 2 or 3 I was staying as out patient at the Family House near UPMC. But over the holidays my left lung collapsed and I was back in with another chest tube. I believe it was towards mid to late July when I was released to go home in Ohio.
So the initial 2 weeks in patient turned into over a month. STILL worth every second of it.
Barry
So the initial 2 weeks in patient turned into over a month. STILL worth every second of it.
Barry
I
IG
Guest
nope, no problems here.
I
IG
Guest
Same as Margaret
I guess if you two were glued back like a kindergarten project , I guess my surgeons were lil older and in grade school. The used a staple gun on me. Counting the all the staples across my chest and ones used around the chest tubes I believe I counted over 100.
Not too bad, I'll give them an A+ on their project, I haven't come apart, YET.
Barry 44 CF , Buckeye , 9 1/2 years post tx UPMC
Not too bad, I'll give them an A+ on their project, I haven't come apart, YET.
Barry 44 CF , Buckeye , 9 1/2 years post tx UPMC
I love seeing how far out from tx everyone is! Greg was in the hospital 3 weeks, and now, in the words of his dr., "You are doing marvellous." We couldn't ask for a better Christmas gift. We are, of course, a little nervous from time to time. That's why I like seeing how well you all are doing. I know there will be bumps in the road - we've already had one or two. We did have a coulple questions, and I know everyone is different, but how long did it take for them to decrease your steroids? He was not diabetic before, but is now from the steroids/stress. I know the diabetes went away for some of you -- was that when the steroids decreased? Also, did your meds dry your skin out, change your hair texture, etc.?
Also, trouble getting a good night's rest, assuming also from the steroids. He's still on 25mg.am/10mg.pm.
Thanks for your input!
Jan (Wife of Greg, 45 Cf'er w/cepacia, tx'd 10-31-05 at Methodist, Indianapolis)
www.standinginthegap4greg.org
Also, trouble getting a good night's rest, assuming also from the steroids. He's still on 25mg.am/10mg.pm.
Thanks for your input!
Jan (Wife of Greg, 45 Cf'er w/cepacia, tx'd 10-31-05 at Methodist, Indianapolis)
www.standinginthegap4greg.org
I
IG
Guest
Alrighty... they should give you a list of when you can decrease steroid dosage, it will be pretty high for the first couple of months to keep his body from attacking the new lungs as a foreign object. After about 6 months it goes down to a tolerable level [at least for me]. I never had diabetes.. don't plan on it either. The meds can dry out your skin, make your hair especially brittle, etc. My transplant clinic gave me a notebook [apparently a very thorough one according to the UPenn tx coordinator I have] that mentions this kind of stuff saying 'don't dye your hair if on 20 mg or prednisone or more due to brittleness, blah blah blah'
As for the good nights rest, I had problems with that afterwards, just let the docs know.
They put me on Ambien so I could sleep, they eventually tapered me off of it as the pain got more tolerable and I could sleep without it.
He shouldn't have to go without sleep when he doesn't have to.
As for the good nights rest, I had problems with that afterwards, just let the docs know.
They put me on Ambien so I could sleep, they eventually tapered me off of it as the pain got more tolerable and I could sleep without it.
He shouldn't have to go without sleep when he doesn't have to.
Jan-
We are so happy that Greg is doing great! 35 mg is still a lot of prednisone, but he is still really early out. I got down to a reasonable dose at about 6 months out as well. Also my center suggested me taking the pm dose of prednisone at 6pm. I was on ambien as well so I slept fine. Without the ambien i roamed the apartment all hours of the night. A lot of people complain about their hair changing post transplant, I was actually lucky since I love my new texture. My hair is actually thicker and softer since the transplant. My skin is very dry and I suggest moisturizing after the shower, that helps. I am borderline diabetic. My blood sugars post transplant were nuts. Sometimes up to 500. Crazy. Now I run anywhere between 80-150 and rarely need insulin. It will get better. Is Greg diabetic?
Margaret
Double lung tx 11.11.04
We are so happy that Greg is doing great! 35 mg is still a lot of prednisone, but he is still really early out. I got down to a reasonable dose at about 6 months out as well. Also my center suggested me taking the pm dose of prednisone at 6pm. I was on ambien as well so I slept fine. Without the ambien i roamed the apartment all hours of the night. A lot of people complain about their hair changing post transplant, I was actually lucky since I love my new texture. My hair is actually thicker and softer since the transplant. My skin is very dry and I suggest moisturizing after the shower, that helps. I am borderline diabetic. My blood sugars post transplant were nuts. Sometimes up to 500. Crazy. Now I run anywhere between 80-150 and rarely need insulin. It will get better. Is Greg diabetic?
Margaret
Double lung tx 11.11.04
Many things are possible post tx... or should I say ANYTHING GOES POST TX.
Sleep habits change, or rather, unable to sleep - ask about Ambien for that.
Hair texture and color may change. Is Greg on cyclo or prograf?
Prednisone dosage will change with time and also it goes by rejection history. Most people I talk to, when they go to every other day dosage of prednisone, is when the diabetes goes away... but that is not a guarantee.
Getting use to diabetes takes awhile and some good training from an endro doc or nutrition person.
luckylungsforjo@aol.com
Joanne
Sleep habits change, or rather, unable to sleep - ask about Ambien for that.
Hair texture and color may change. Is Greg on cyclo or prograf?
Prednisone dosage will change with time and also it goes by rejection history. Most people I talk to, when they go to every other day dosage of prednisone, is when the diabetes goes away... but that is not a guarantee.
Getting use to diabetes takes awhile and some good training from an endro doc or nutrition person.
luckylungsforjo@aol.com
Joanne
Greg's on prograf & cellcept (plus prednisone). Sorry if I'm misspelling. Yes, they gave him Ambien. He was not diabetic before. I'm not complaining! I mean, after all, he can breathe!!!!!!!!!!!!!! We have great docs, of course. Just curious what everyone's personal experience was. I also like to specifically hear what cf'ers experience have been.
Take care all, and thanks for the input.
jan
Take care all, and thanks for the input.
jan
blindhearted
New member
I've been reading, and even though I'm not on a transplant list, like everyone else it is something to think about.
I have some questions, they may sound stupid, but I want to ask.
I am reading how sleep patterns, hair changes, skin, etc
How do they change? total opposite of what you already have? Or if you have trouble sleeping now, does it get worse? Hair that's oily and soft enough get dry and brittle (dryer is okay...brittle not so much. I love the way my hair is, so does alot of other ppl. I get comments all the time). Does the color get lighter or darker? How bad does your skin dry out?
And most important....do you ever get back to your normal self as far as these things go?
Have any of you had severe mood changes with Predisone? When I am on 10 mg a day for a week, I am a very unpleasant person to be around and I cant control it. I'm spiteful. My family say I like a rattlesnake. Ready to strike (be snappy, untolerable, ill-nature) at anyone or anything. Or "Ill as a hornet". Lets just say they count down the days to when I am coming off of it. I don't mean anything I say but I am just very very ill. I cant imagine being on it for months with a mood change like this. And it makes my skin hurt like crazy, extremely sensitive to touch (even at a low dose), anyone have that too?
I have some questions, they may sound stupid, but I want to ask.
I am reading how sleep patterns, hair changes, skin, etc
How do they change? total opposite of what you already have? Or if you have trouble sleeping now, does it get worse? Hair that's oily and soft enough get dry and brittle (dryer is okay...brittle not so much. I love the way my hair is, so does alot of other ppl. I get comments all the time). Does the color get lighter or darker? How bad does your skin dry out?
And most important....do you ever get back to your normal self as far as these things go?
Have any of you had severe mood changes with Predisone? When I am on 10 mg a day for a week, I am a very unpleasant person to be around and I cant control it. I'm spiteful. My family say I like a rattlesnake. Ready to strike (be snappy, untolerable, ill-nature) at anyone or anything. Or "Ill as a hornet". Lets just say they count down the days to when I am coming off of it. I don't mean anything I say but I am just very very ill. I cant imagine being on it for months with a mood change like this. And it makes my skin hurt like crazy, extremely sensitive to touch (even at a low dose), anyone have that too?