Lung Transplant with CMV

August 3, 2008

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

August 3, 2008

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

August 3, 2008

Hi Judy, It is good to hear from you. I am so pleased you are hanging in there giving it your all. I just know your thrilled to have this first year almost under your belt. I always think of your Tx date cause it is my best friends birthday.. Lets see-- Leanne is doing great. She has been traveling a lot. One of our members gave her a nickname of Lojack. She needs one for us to keep up with her. She is just the best. She is going all over talking about PF. "Representing" Beth is doing remarkably well. She has lost some weight walking on her dreadmill. I get tired thinking about walking as much as she does. She is still as sweet and helpful as can be.Joyce Dalton has had more thrown at her that I could ever explain. She is on flolan which is a very strong drug for PH. She has to put it into a pic line right into her heart. I don't understand all she has been through and could never remember all she has been through. MY HERO. Keep her in your prayers.Sher is doing ok. She has had a lot of pain thanks to her author. She is using pain patches now and they seem to be helping. She is on 2L of 02 now. So she is hanging in too. Gwynne had a Tx in April, on her birthday. It was so wonderful the way that worked out for her. She went to Denverfor the first time in 5 years or so. I can't wait to hear how her trip went and how her new lung worked in thosebeautiful mountains. Jane from Ga. is doing remarkably well. She was in a study and her numbers increased a bit so that is a good thing.Jon from Texas now has a plastic anemia so that made him ineligible for Tx and his lung disease makes him ineligible for bone marrow Tx. I think that is right. I just hate it for him and Teri. They are traveling a little. Jon seems to be doing well with all this. He needs prayers too.Kerry the little one from In. is now listed. We are all praying her phone rings soon. , is doing well. She is working and doesn't post much anymore. With the little ones and being single again she stays busy. P is hanging in too. I am not the best one to catch you up. But I'm doing the best a blond can.Judy, it's getting late and I can't think anymore so if I have left out anyone you can remember let me know. I know there are probably 600 I didn't mention. I am so happy for you.God Bless you again.. Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."

August 3, 2008

Hi Judy, I'm glad you're hanging in there and glad to see a post from you. I'm doing OK! a few bumpy rides...since April...I also have a PICC line inserted for my treatments and meds. IrenePF 03/07 Raynaud's Disease 09/07

Re: Lung Transplant with CMVHi Judy, It is good to hear from you. I am so pleased you are hanging in there giving it your all. I just know your thrilled to have this first year almost under your belt. I always think of your Tx date cause it is my best friends birthday..

Lets see-- Leanne is doing great. She has been traveling a lot. One of our members gave her a nickname of Lojack. She needs one for us to keep up with her. She is just the best. She is going all over talking about PF. "Representing"

Beth is doing remarkably well. She has lost some weight walking on her dreadmill. I get tired thinking about walking as much as she does. She is still as sweet and helpful as can be.

Joyce Dalton has had more thrown at her that I could ever explain. She is on flolan which is a very strong drug for PH. She has to put it into a pic line right into her heart. I don't understand all she has been through and could never remember all she has been through. MY HERO. Keep her in your prayers.

Sher is doing ok. She has had a lot of pain thanks to her author. She is using pain patches now and they seem to be helping. She is on 2L of 02 now. So she is hanging in too.

Gwynne had a Tx in April, on her birthday. It was so wonderful the way that worked out for her. She went to Denver

for the first time in 5 years or so. I can't wait to hear how her trip went and how her new lung worked in those

beautiful mountains.

Jane from Ga. is doing remarkably well. She was in a study and her numbers increased a bit so that is a good thing.

Jon from Texas now has a plastic anemia so that made him ineligible for Tx and his lung disease makes him ineligible for bone marrow Tx. I think that is right. I just hate it for him and Teri. They are traveling a little. Jon seems to be doing well with all this. He needs prayers too.

Kerry the little one from In. is now listed. We are all praying her phone rings soon.

, is doing well. She is working and doesn't post much anymore. With the little ones and being single again she stays busy.

P is hanging in too.

I am not the best one to catch you up. But I'm doing the best a blond can.

Judy, it's getting late and I can't think anymore so if I have left out anyone you can remember let me know. I know there are probably 600 I didn't mention.

I am so happy for you.

God Bless you again..

Love and Prayers, Peggy

IPF 2004, Florida

"Worry looks around,

Sorry looks back,

Faith looks up."

Now with a new friend-happy design! Try the new Yahoo! Canada Messenger

August 4, 2008

Judy, It's so nice to see your post. I'm

sorry that you've had a sort of rough time.

Having your family around must be wonderful.

Gwynne has also had a transplant and Kerry, and Tina are listed as is

.

L. and Vicky are hanging in with many tough days.

Joyce D. has had some troubles too.

There are many newbies.

As for me...I've got a new grand daughter...pictures are posted .

We've moved to a ranch house, no more steps, and the difference is

amazing.

Thanks for taking time to say "Hello" and go get some rest.

..

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

cbayjpw wrote: