Re: Lung Transplant with CMV

[Guest guest]

Beth,

It boggles my mind too that it has been a year and even more so that

my youngest grand daughter now is almost 19 mo old. I want to go see

them again, but have not felt up to it and discussed with my lung

doctor yesterday at my followup the fact that she has Neutrapenia and

has had lots of infections. I would not want to give her CMV nor get

any infection from her. I also cannot believe it has been better

than 2 weeks since I have been on the site, but I have had problems

with my computer, with pain in my back, hip and leg and shortness of

breath when I am on my feet and active. As you know I continue to be

active. In fact I went Christmas shopping for the Grandkids in HI

last week on 3 different afternoons. I have not been going to the Y

lately to do my physical therapy exercises though because I have

gotten so many bruises and bleedings on my arms thanks to side effect

of Prendisone according to the doctor. But I believe that Valcyte

triggered this when I went back on it in May. They finally took me

off of it but then after a couple more blood tests put me back on

it. Yesterday besides the normal blood tests and Chest X ray they do

at my follow up visits and my breathing tests (which are not as good

as they were even though my O2 level is still 98) they also gave me

my annual IV of Zemeta to prevent osteoporisis & when I told my son

tonight that I went to bed at 10;30 p.m. last night (earliest in a

year) and slept 10 hours (without any sleeping pills now for a week)

he said that Zemeta is actually a med used for cancer patients and

one of the side effects is that it strengthens your bones & it

probably made me so tired. Am tired now too but going to watch a

little tv and take my meds. This Fri. Aug. 22 is my left lung's

birthday.

Love and Aloha,

Judy IPF 11/06 Transplant 8/22/07

-- In Breathe-Support , Beth wrote:

>

> Judy,

> I did a double take when I read your post...It boggles my mind that

it's been a year this month. I know you have struggled but you have

also persevered and you are still here to tell us about it.

> I'm so glad that you have kept us updated and equally glad that you

have not sugarcoated the difficulties and problems you have

encountered.

> We've had Gwynne who had her transplant last winter in Texas. Other

than that we have a few who are listed and waiting for the phone to

ring.

> Keep checking in when you have an opportunity. You remain in my

thoughts and prayers!

>

>  Beth 

> Age 48 Fibrotic NSIP 06/06 UCTD 07/08

>  

> Change everything. Love and Forgive    

>  

>  

>

>

>

> 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]

Hi Jane,

I really don't know that much about the CMV except after having a

sore throat for 10 weeks from Feb. to May until they put me back on

Valcyte my throat got better within 3 days and my body began to feel

a bit stronger. I also had a number of sinus infections this winter

along with the throat problems and muscle weakness. They had me on

the Valcyte 4 pills a day for 3 weeks then 2 a day for 3 weeks then

took me off as a test here said I was negative. However, the next

test done here showed me as positive so they put me back on it, then

the next test showed me as negative so they don't have much

confidence in the tests being done here. They did another CMV test

yesterday when I had my followup so I am still on Valcyte for now

until they get the results of this latest test.

My biggest problem now is the bruising and bleeding which in my mind

was triggered when they put me back on the Valcyte in May even though

the doctor blames Prednisone for this. Yesterday a.m. I bumped my

right wrist very hard on corner of my bedside table at 5:15 a.m. as I

was making my bed as we were leaving at 6 to go toIndy for my

followup. So now I have to wait for it to heal before I go back to

the Y for my water exercises or will have to just do the leg ones and

hold my hands up out of the water. Days just do not seem long enough

for me as I still don't have my pictures all up nor have I returned

all of the merchandise I have to return so have to first find my

receipts. But I was extremely tired after my inusion for

osteoporisis prevention yesterday and am tired tonight. So am

signing off and hope to get back on here more often to see how others

are doing. However, I've had problems with my computer and plan on

having a Geek work on it next week.

Love and Aloha,

Judy IPF 11/06 Transplant 8/22/07

> >

> > 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

> >

>