Re: Re: Lung Transplant with CMV /JUDY

[Guest guest]

...and your left luuuunnngggggg.

Hugs too.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Lung Transplant with CMV> > > Hi Peggy,> You are almost the only one I recognize on the web site since I have > not been on it much since my transplant. My one year birthday for my > left lung transplant is coming up soon, 8/22/08. They say the first > year is the hardest, and that sure has been true. But important > thing is I am still here in spite of all the complications. > > I had a sore throat for 10 weeks that began in Feb. shortly after the > biopsie showed negative for rejection so the doctor took me off of > Valcyte and VFend, but incrased my Program from 3mg twice a day to 6 > mg twice a day. That is the grizzly bear rejection med that has > nasty side effects including causing the tremors. However, it is > also the angel that helps keep you alive. Finally the end of April > the thought occurred to me that my sore throat had begun shortly > after going off of Valcyte & I thought of calling the doc, but had > not done it. That very Fri., May 2 his lung coordinator called me > and he put me back on Valcyte only 4 a day instead of just 2 a day. > Within 3 days my throat was better and with a couple of weeks I began > feeling stronger. However, after being on it 3 weeks of 4 per day > then 2 per day for 3 weeks I think the doc then took me off because > my Prograf level had jumped from 8.5 to 23.3 (he wants it to be > 10.2). Then I began feeling weaker, my skin has gotten so thin and > delicate that just barely touching it and I bruise and with my > weakness and wobbliness I bump into things and get bruised very easy > and bleed easily. When I get a bleeding spot I end up canceling my > water physical therapy so I haven't done much therapy since June 17 > which was the day of my last followup and the day we took my 2 oldest > grand kids home as they had been here for 10 days. It was wonderful > having them here except after the first 2 days I was so exhausted and > so irritable as they hasseled each other I felt like taking them > home. But of course we didn't until our plan for the 17th. On the > 29th of June they flew (alone) to CO to spend a month with their > grandpa and step grandma and flew home today. Their school starts in > Lafayette in a week or 2. I had portraits taken of them and one was > done with the 3 of us and I will try to remember to load a couple > photos on this web site this week. But right now I need to go take > my pills, fill my pill box for the week and get to bed. For a long > time I could not get to sleep before 2 a.m. but lately it has been > midnight and then I at least get 8 or 9 hours of sleep. > > The most recent blood test, July 22, showed me as positive with CMV > with a count of 1420 so I am trying to be sure to get enough rest. > I'd sure like to know how the other's who were on this site a year > ago are doing now. Has anyone else had a transplant? I am going to > try to at least check this site more often.> > Love and Aloha,> Judy - OH - IPF 11/06 Left Lung Transplant 8/22/07>

[Guest guest]

...and your left luuuunnngggggg.

Hugs too.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Lung Transplant with CMV> > > Hi Peggy,> You are almost the only one I recognize on the web site since I have > not been on it much since my transplant. My one year birthday for my > left lung transplant is coming up soon, 8/22/08. They say the first > year is the hardest, and that sure has been true. But important > thing is I am still here in spite of all the complications. > > I had a sore throat for 10 weeks that began in Feb. shortly after the > biopsie showed negative for rejection so the doctor took me off of > Valcyte and VFend, but incrased my Program from 3mg twice a day to 6 > mg twice a day. That is the grizzly bear rejection med that has > nasty side effects including causing the tremors. However, it is > also the angel that helps keep you alive. Finally the end of April > the thought occurred to me that my sore throat had begun shortly > after going off of Valcyte & I thought of calling the doc, but had > not done it. That very Fri., May 2 his lung coordinator called me > and he put me back on Valcyte only 4 a day instead of just 2 a day. > Within 3 days my throat was better and with a couple of weeks I began > feeling stronger. However, after being on it 3 weeks of 4 per day > then 2 per day for 3 weeks I think the doc then took me off because > my Prograf level had jumped from 8.5 to 23.3 (he wants it to be > 10.2). Then I began feeling weaker, my skin has gotten so thin and > delicate that just barely touching it and I bruise and with my > weakness and wobbliness I bump into things and get bruised very easy > and bleed easily. When I get a bleeding spot I end up canceling my > water physical therapy so I haven't done much therapy since June 17 > which was the day of my last followup and the day we took my 2 oldest > grand kids home as they had been here for 10 days. It was wonderful > having them here except after the first 2 days I was so exhausted and > so irritable as they hasseled each other I felt like taking them > home. But of course we didn't until our plan for the 17th. On the > 29th of June they flew (alone) to CO to spend a month with their > grandpa and step grandma and flew home today. Their school starts in > Lafayette in a week or 2. I had portraits taken of them and one was > done with the 3 of us and I will try to remember to load a couple > photos on this web site this week. But right now I need to go take > my pills, fill my pill box for the week and get to bed. For a long > time I could not get to sleep before 2 a.m. but lately it has been > midnight and then I at least get 8 or 9 hours of sleep. > > The most recent blood test, July 22, showed me as positive with CMV > with a count of 1420 so I am trying to be sure to get enough rest. > I'd sure like to know how the other's who were on this site a year > ago are doing now. Has anyone else had a transplant? I am going to > try to at least check this site more often.> > Love and Aloha,> Judy - OH - IPF 11/06 Left Lung Transplant 8/22/07>