post transplant questions

[Guest guest]

Has anyone on this site had a transplant since I had mine Aug. 22,

2007? If so, I'd like to hear how you are doing.

The doctor had put me back on Valcyte May 2 but now has taken me off

of it again. (Right after I got a 90 day supply a $6K bottle for

$300).

I have been having terrible bruising of my skin mostly on my arms and

now I am getting cuts, tears and bleeding! They are claiming it is

because I have been on Prednisone so long (even though now it is down

to 15 mg), but the bruising didn't start until they put me back on

the Valcyte. Because of the cuts and tears I have had to cancel my

water phsyical therapy appointments last week and this week. I did

have my land therapy which is simply a traction table for my back;

but the therapist over did it this Tues. and my back has been very

painful ever since. In fact I am going to cancel my chiropractic

appointment tomorrow as I don't want anyone touching my back. I see

the doctor at the Cincinnati pain clinic again next Mon. I have been

trying to get cleaning and other stuff done around the house today

and my pain meds, pain patches, back brace, hot packs, cold packs,

nothing has relieved my pain. But I am going to go take my bowl of

pills now includidng my Oxycodone, Lyrica, Klonopin and Lunesta and

try to relax and get some sleep. Some nights I still don't get to

sleep until 1 or 2 but I also no longer will allow the doctors to

make appointments for me in the mornings except my lung doctor in

Indy & I don't see him again until Aug. 19th. My 1 year will be up

on Aug. 22 and will then get to meet my donor's family. I was hoping

I would be feeling much better by then since the medical people kept

telling me the first year is the hardest. It's now been 10 months

and today I was feeling short of breath event hough my oxygen level

was 98, but my heart rate kept going over 100 whenever I was on my

feet plus not only is my back pain hurting really bad but both legs

are hurting. So I plan on staying off my feet most of tomorrow and

just sorting papers.

Sure hope those of you who have made the transplant list get the call

for your new lung very soon and that you do well. It's not a fun

thing but it sure beats the alternative. The doctor had given me 1

year to live in Feb. 07 unless I had a transplant, so with that in

mind I would say I have done quite well. So keep your positive

attitudes; and if your attitude is negative find soemthing to

motivate you to having a positive attitude.

My doctor has approved me to go to Hawaii again for a visit with my

family there, but I have not felt strong enough yet. Also, since the

volcano has been erupting on the big island since March it has been

spitting out sulfer dioxide and it drifts over to Honolulu whenever

the Trade Winds stop blowing and the VOG has been really bad on some

days. Before this happened my son wanted me to come for a month or

so, but now has said I better not come over. That sulfer dioxide is

not healthy for anyone let alone someone like us. I wish he could

get a job on the mainland. He thought he was but then there was a

hiring freeze. So I don't know when I am going to get to go see my

grandkids again. Having had the 2 older ones visit me here for 10

days was nice but very tiring for me even though they were helpful.

However, I cannot imagine visiting with the 4 young ones in HI

especially if I have to go by myself-which will be necessary since my

oldest son, who lives next door is going to have to find a new job

since the 10,000 employees at his company are all going to get laid

off thanks to DHL's decision to use UPS in the US instead of ABX Air.

Love and Aloha,

Judy IPF 11/06 Transplant 8/22/07 (left lung-still have IPF in rt

lung).

[Guest guest]

>Hi Judy,

I haven't had a lung transplant yet, but wanted to respond to you

regarding your pain in your back. Make sure they check for possible

compression fractures since you have been on so much prednisone for a

long time. It happened to me a few years ago. At the time of my

complaints, no doctor even thought of that possibility. So do

mention it, won't you?

Sherry , NSIP 1998

> Has anyone on this site had a transplant since I had mine Aug. 22,

> 2007? If so, I'd like to hear how you are doing.

>

> The doctor had put me back on Valcyte May 2 but now has taken me

off

> of it again. (Right after I got a 90 day supply a $6K bottle for

> $300).

>

> I have been having terrible bruising of my skin mostly on my arms

and

> now I am getting cuts, tears and bleeding! They are claiming it

is

> because I have been on Prednisone so long (even though now it is

down

> to 15 mg), but the bruising didn't start until they put me back on

> the Valcyte. Because of the cuts and tears I have had to cancel my

> water phsyical therapy appointments last week and this week. I did

> have my land therapy which is simply a traction table for my back;

> but the therapist over did it this Tues. and my back has been very

> painful ever since. In fact I am going to cancel my chiropractic

> appointment tomorrow as I don't want anyone touching my back. I

see

> the doctor at the Cincinnati pain clinic again next Mon. I have

been

> trying to get cleaning and other stuff done around the house today

> and my pain meds, pain patches, back brace, hot packs, cold packs,

> nothing has relieved my pain. But I am going to go take my bowl of

> pills now includidng my Oxycodone, Lyrica, Klonopin and Lunesta

and

> try to relax and get some sleep. Some nights I still don't get to

> sleep until 1 or 2 but I also no longer will allow the doctors to

> make appointments for me in the mornings except my lung doctor in

> Indy & I don't see him again until Aug. 19th. My 1 year will be up

> on Aug. 22 and will then get to meet my donor's family. I was

hoping

> I would be feeling much better by then since the medical people

kept

> telling me the first year is the hardest. It's now been 10 months

> and today I was feeling short of breath event hough my oxygen level

> was 98, but my heart rate kept going over 100 whenever I was on my

> feet plus not only is my back pain hurting really bad but both legs

> are hurting. So I plan on staying off my feet most of tomorrow and

> just sorting papers.

>

> Sure hope those of you who have made the transplant list get the

call

> for your new lung very soon and that you do well. It's not a fun

> thing but it sure beats the alternative. The doctor had given me 1

> year to live in Feb. 07 unless I had a transplant, so with that in

> mind I would say I have done quite well. So keep your positive

> attitudes; and if your attitude is negative find soemthing to

> motivate you to having a positive attitude.

>

> My doctor has approved me to go to Hawaii again for a visit with my

> family there, but I have not felt strong enough yet. Also, since

the

> volcano has been erupting on the big island since March it has been

> spitting out sulfer dioxide and it drifts over to Honolulu whenever

> the Trade Winds stop blowing and the VOG has been really bad on

some

> days. Before this happened my son wanted me to come for a month or

> so, but now has said I better not come over. That sulfer dioxide is

> not healthy for anyone let alone someone like us. I wish he could

> get a job on the mainland. He thought he was but then there was a

> hiring freeze. So I don't know when I am going to get to go see my

> grandkids again. Having had the 2 older ones visit me here for 10

> days was nice but very tiring for me even though they were

helpful.

> However, I cannot imagine visiting with the 4 young ones in HI

> especially if I have to go by myself-which will be necessary since

my

> oldest son, who lives next door is going to have to find a new job

> since the 10,000 employees at his company are all going to get laid

> off thanks to DHL's decision to use UPS in the US instead of ABX

Air.

>

> Love and Aloha,

> Judy IPF 11/06 Transplant 8/22/07 (left lung-still have IPF in rt

> lung).

>

[Guest guest]

Thanks so much for your comments Judy. By biopsy, I was diagnosed to have IPF last May - although looking back on Catscans - it was revealing itself (scarring) back in 2005. I just completed a transplant evaluation and was accepted but for now have opted not to be listed. My wife and I feel that we need to gather all the facts before we make our decision one way or the other. Many of those facts can only come from those IPF patients who have had transplant(s). For one thing, I have questioned whether one's quality of life can be seriously altered by only replacing one of the diseased lungs. That allowing the IPF to progress in the other lung would seem to counter any benefit one may have by going through with

a transplant. The doctor's themselves have had no comeback to this question so we must look to the patients for answers.

I have been trying to reach people such as yourself for the last year with no success. I have made contact with most of the transplant centers around the country and after discussing this issue with their social workers, I have requested email addresses or phone numbers so I could communicate with their successful transplant patients. It is like our requests continue to fall on deaf ears. This has gone on now for over 13 months and to this day, no one has come forward.

We don't want to start feeling paranoid like there is some attempt to keep that information from us, but how do you explain the vail of secrecy around all this? Last month, when I completed my transplant evaluation, I requested this information again. In fact, the team was quite surprised when I said I didn't just want to hear about their success stories - those patients who recovered in record time - I also wanted to hear from those who are still in a hospital bed 5 months after the transplant. Again, to date no information has been made available. In the past, I have posted similar requests for such information on this forum as well as the Transplant Friends forum without success.

Can somebody out there shed some light on this? Many of us will be crossing this threshold someday and we need to know what we are getting ourselves into. For me the likelihood of whether I can have a better "quality of life" will be the basis of my decision. But I cannot reach such a decision unless I have the rest of the story.

Mike

[Guest guest]

Mike, on another board we have a gentleman who had a single lung

transplant and is doing very well. I believe he's in his 60's and was

transplanted about 2 years ago. He was in the hospital only a few

weeks. He is without oxygen and while he does have many doctor

appointments and follow-up he is a huge advocate of transplant.

We also have an otherwise healthy 48 year old man who went into the

hospital in December for his transplant and is still there. He is

fighting hard and has made much progress and will hopefully be

released within another month or two.

There are a couple of success stories on this board as well, most

recently Gwynne who probably holds the world record for a quick recovery!

I also know of others who transplanted, lived a while and then passed

away.

This is such a hard decision for some people and I understand your

hesitancy. So many facts to sift through, and a ton of information

from doctors, and then the stories of individuals who have undergone

the surgery.

I don't know why your requests for emails are being denied by the

transplant centers except there is probably a privacy issue at stake.

I wish you much success in your journey, and if you decide to go ahead

with the transplant I will be praying for you to soar through it with

a rapid recovery.

I can't answer the question about the diseased lung that is left in

the chest in a single lung transplant. I assume the new lung gives

enough oxygen to override the damaged one.

I personally can't have a transplant due to other health issues, but I

cheer for all of you out there who are given a second chance at life

and who then share your stories and give hope to others.

Big Hugs!

Babs in Texas

>

> Thanks so much for your comments Judy. By biopsy, I was

diagnosed to have IPF last May - although looking back on Catscans -

it was revealing itself (scarring) back in 2005. I just completed a

transplant evaluation and was accepted but for now have opted not to

be listed. My wife and I feel that we need to gather all the facts

before we make our decision one way or the other. Many of those

facts can only come from those IPF patients who have had

transplant(s). For one thing, I have questioned whether one's

quality of life can be seriously altered by only replacing one of the

diseased lungs. That allowing the IPF to progress in the other lung

would seem to counter any benefit one may have by going through with

a transplant. The doctor's themselves have had no comeback to this

question so we must look to the patients for answers.

>

> I have been trying to reach people such as yourself for the last

year with no success. I have made contact with most of the transplant

centers around the country and after discussing this issue with their

social workers, I have requested email addresses or phone numbers so I

could communicate with their successful transplant patients. It is

like our requests continue to fall on deaf ears. This has gone on now

for over 13 months and to this day, no one has come forward.

>

> We don't want to start feeling paranoid like there is some attempt

to keep that information from us, but how do you explain the vail of

secrecy around all this? Last month, when I completed my transplant

evaluation, I requested this information again. In fact, the team was

quite surprised when I said I didn't just want to hear about their

success stories - those patients who recovered in record time - I

also wanted to hear from those who are still in a hospital bed 5

months after the transplant. Again, to date no information has been

made available. In the past, I have posted similar requests for such

information on this forum as well as the Transplant Friends forum

without success.

>

> Can somebody out there shed some light on this? Many of us will be

crossing this threshold someday and we need to know what we are

getting ourselves into. For me the likelihood of whether I can have

a better " quality of life " will be the basis of my decision. But I

cannot reach such a decision unless I have the rest of the story.

>

> Mike

>