Re: transplant - to Jean et al.

[Guest guest]

Gwynne, You are amazing and I wish I could save your post to read to Don at a later time. We are going to investigate the option, but he has many strikes against him. He finds the hope of maybe a transplant a little comforting right now, and I'm just going to let him have those comfort thoughts. He has enough negative thoughts of his own.Thanks for the reports from you. K Illinois Gwynne Keyland wrote: I

would implore you not to take any single person'sopinion to heart about the pros and cons of transplant.I don't feel your doctor is being quite fair in weighingyour options for you. I like docs who are verystraightforward, but he sounds more negative thanrealistic. Everyone knows there are risks, some of whichcan be serious, and there are many medications, someof which cause serious side effects.But I'm only 5 weeks out from a single-lung transplantand I feel like a different person altogether. People canhardly believe it when they see me. I was on 18 liters withexertion, but that really wasn't cutting it anymore. I hadreached a point where my sats fell into the 70's doingalmost anything. I coughed a great deal. I had to let myphysical therapist go, as I wasn't capable of doing theactivities anymore. I got worse every week during themonth of March. I tried to stay as active as possible, bygetting out to

have lunch with a friend or whatever, butjust getting dressed to go out took a tremendous toll onme. Showering was a bitch. My doctors and I knew I wasdying, and I'm 57 years old. I had some extenuatingcircumstances (blood type and antibodies) which we knewwould likely extend my time on the list. I was double-listed,in Dallas (for 13 months) and in San (for 7 weeks).My life was all about the hose up the nose. I was oncontinuous 02 almost since my VATS in 2004. I probablyhad IPF 3 years before that. I was a very, very sick woman.My surgery was on my birthday. It went so smoothly that ittook only 2 hr. 20 minutes, and there were and have beenno complications so far. I can take a deep breath in and out,and oxygenate on room air at 97-99%. I've been so inactivefor so long that I'm quite out of shape, and my large musclegroups aren't used to getting all that oxygen. That, plusbeing only 5 weeks out from

MAJOR surgery, mean I stillget a tiny bit winded on my walks around the apartmentcomplex, but not bad. And I can talk while I walk. I stillhave to be a little careful about not hopping out of a chairtoo quickly in order not to feel a little light-headed. But Idon't cough - ever. I sleep well. I feel like the old me, and Inever thought I'd feel that again even with a transplant.My liquid oxygen is already gone from my home, so I won'teven have to look at it when I get there.With IPF, you give up so much and grieve so many losses.Now I breathe a prayerful thanks for every morning andevery night that I have this second chance. I breathe deepbreaths for this group when I pray for them. My doctors areecstatic that things are going so well. I was released from thehospital after a week, and I will probably get sent back hometo Ft. Worth the end of next week (the 6 week mark). Thedifference in pre- and

post-transplant is very dramatic, andmy ONLY complaint is tremors from the anti-rejection meds.But they've already decreased them and my Prednisone (I'mdown to 30mg daily - usually down 5mg per week) so maybethat'll get better. I was never delusional, exceedingly grumpy,hysterical or moody. I never had nightmares. I was only on thevent for 24 hours. I got anxious a couple of times, but that'sa trade-off well worth it in my book.I feel like a walking miracle, and I would encourage you notto rule out the possibility of transplant in your future. Brucesaid I'm making it look easier than it is, but everyone (3 otherpeople) who were transplanted here the same week as I wasare also doing spectacularly well and recovering quickly. Mytransplant team is excellent! I just love the whole lot of them.Oh, YES, there was pain from the incision, and probably I'llhave intermittent discomfort from that (thoracotomies

HURT-they go in from the back and side vs. down the front) fora long time. But it's certainly bearable. But I take only ExtraStrength Tylenol if anything now, and I am able to wear a braagain, which they didn't think I'd be able to yet. My point is,yes I've been fortunate and blessed, but there are a lot of othersuccess stories out there, and I've met some of them in person.They look and feel great, and most have resumed totally normallives. And even if I hit bumps in the road, I will still be glad Idid this, even if only for the time I've had so far. My life wasone big dead-end bump before. This has been a remarkable andphenomenal experience - the most amazing thing that's everhappened to me, for sure (well, and the births of my children).And I've been given this time for precious life that I wouldn'thave had otherwise. For me, this was was an option I had to take.Since April 3, my daughter's gotten engaged

and I'll be ableto go to that wedding without oxygen. And I WILL be on thedance floor in September. I will also be taking a trip to Coloradosometime in the fall, which makes my heart joyful just thinkingabout. I'm simply asking you to keep your options open. Best ofluck to you.Hugs and blessings,Gwynnie 57 Single-lung transplant on 4-3-08 atUTHSC San , TX K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

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[Guest guest]

Gwynne/Jean/et al

Like so many other things this is learn all you can and then decide what

is right for you and if you are a good candidate. I've watched Gwynne's

journal with tremendous interest as I don't know whether I'll be

eligible or what I will decide when the time comes. The point is I don't

need to decide now, just learn.

Transplant isn't easy, but one of the most incredible experiences of my

life is knowing how Gwynne is doing after knowing that the last time I

ate lunch with her was so close to being the last time. I know the

others were thrilled to hear her voice when we called her last Saturday

night, but when I heard her voice it hit so hard that I'd never heard

that voice. The voice I had heard in the past was nice, comforting,

soothing, but it never had the power of the one I heard last Saturday. I

didn't realize until then there was another voice.

I've followed others who had transplants too. Some went smoother than

others. Now on forums you don't end up talking to the negatives and

those who don't make it, obviously. However, no one I've talked with has

regretted going it. I'm sure there are those who do, but the ones I've

read have all been very glad they did.

Ultimately thats what some of the screening is for, to help you find out

if its the right choice for you. But don't close any options

prematurely. Every day they are getting better. I suspect the five year

survival rate is much higher than anyone knows as all we can read is

based on transplants six years ago. I believe when we are able to see

the results of this year we'll be pleasantly surprised. They continue to

work to reduce the post-transplant issues including the medications

required. Just to know Gwynne is already down to 30 MG of prednisone is

something. Thats considered a medium dosage fast approaching a low

dosage.

So all I say is learn all you can and when the time comes you have to

decide you'll be prepared. Meanwhile do the things that would help you

if you did go for a transplant because they will help you either

way-things like the exercise and controlling weight and taking care of

the rest of your body.

I can't imagine how incredible it will be the first time I see the

post-transplant Gwynne, but I do know it will make me keep a very open

mind toward the possibility. Why, I might not even park across the lot

to save her the best place next time. Oh, i will, but not because of her

health, because she's a lady I would do that for anyway.

Keep an open mind and make no final decisions on anything before you

must.

>

>

> I would implore you not to take any single person's

> opinion to heart about the pros and cons of transplant.

> I don't feel your doctor is being quite fair in weighing

> your options for you. I like docs who are very

> straightforward, but he sounds more negative than

> realistic. Everyone knows there are risks, some of which

> can be serious, and there are many medications, some

> of which cause serious side effects.

> But I'm only 5 weeks out from a single-lung transplant

> and I feel like a different person altogether. People can

> hardly believe it when they see me. I was on 18 liters with

> exertion, but that really wasn't cutting it anymore. I had

> reached a point where my sats fell into the 70's doing

> almost anything. I coughed a great deal. I had to let my

> physical therapist go, as I wasn't capable of doing the

> activities anymore. I got worse every week during the

> month of March. I tried to stay as active as possible, by

> getting out to have lunch with a friend or whatever, but

> just getting dressed to go out took a tremendous toll on

> me. Showering was a bitch. My doctors and I knew I was

> dying, and I'm 57 years old. I had some extenuating

> circumstances (blood type and antibodies) which we knew

> would likely extend my time on the list. I was double-listed,

> in Dallas (for 13 months) and in San (for 7 weeks).

> My life was all about the hose up the nose. I was on

> continuous 02 almost since my VATS in 2004. I probably

> had IPF 3 years before that. I was a very, very sick woman.

>

> My surgery was on my birthday. It went so smoothly that it

> took only 2 hr. 20 minutes, and there were and have been

> no complications so far. I can take a deep breath in and out,

> and oxygenate on room air at 97-99%. I've been so inactive

> for so long that I'm quite out of shape, and my large muscle

> groups aren't used to getting all that oxygen. That, plus

> being only 5 weeks out from MAJOR surgery, mean I still

> get a tiny bit winded on my walks around the apartment

> complex, but not bad. And I can talk while I walk. I still

> have to be a little careful about not hopping out of a chair

> too quickly in order not to feel a little light-headed. But I

> don't cough - ever. I sleep well. I feel like the old me, and I

> never thought I'd feel that again even with a transplant.

> My liquid oxygen is already gone from my home, so I won't

> even have to look at it when I get there.

>

> With IPF, you give up so much and grieve so many losses.

> Now I breathe a prayerful thanks for every morning and

> every night that I have this second chance. I breathe deep

> breaths for this group when I pray for them. My doctors are

> ecstatic that things are going so well. I was released from the

> hospital after a week, and I will probably get sent back home

> to Ft. Worth the end of next week (the 6 week mark). The

> difference in pre- and post-transplant is very dramatic, and

> my ONLY complaint is tremors from the anti-rejection meds.

> But they've already decreased them and my Prednisone (I'm

> down to 30mg daily - usually down 5mg per week) so maybe

> that'll get better. I was never delusional, exceedingly grumpy,

> hysterical or moody. I never had nightmares. I was only on the

> vent for 24 hours. I got anxious a couple of times, but that's

> a trade-off well worth it in my book.

>

> I feel like a walking miracle, and I would encourage you not

> to rule out the possibility of transplant in your future. Bruce

> said I'm making it look easier than it is, but everyone (3 other

> people) who were transplanted here the same week as I was

> are also doing spectacularly well and recovering quickly. My

> transplant team is excellent! I just love the whole lot of them.

> Oh, YES, there was pain from the incision, and probably I'll

> have intermittent discomfort from that (thoracotomies HURT-

> they go in from the back and side vs. down the front) for

> a long time. But it's certainly bearable. But I take only Extra

> Strength Tylenol if anything now, and I am able to wear a bra

> again, which they didn't think I'd be able to yet. My point is,

> yes I've been fortunate and blessed, but there are a lot of other

> success stories out there, and I've met some of them in person.

> They look and feel great, and most have resumed totally normal

> lives. And even if I hit bumps in the road, I will still be glad I

> did this, even if only for the time I've had so far. My life was

> one big dead-end bump before. This has been a remarkable and

> phenomenal experience - the most amazing thing that's ever

> happened to me, for sure (well, and the births of my children).

> And I've been given this time for precious life that I wouldn't

> have had otherwise. For me, this was was an option I had to take.

>

> Since April 3, my daughter's gotten engaged and I'll be able

> to go to that wedding without oxygen. And I WILL be on the

> dance floor in September. I will also be taking a trip to Colorado

> sometime in the fall, which makes my heart joyful just thinking

> about. I'm simply asking you to keep your options open. Best of

> luck to you.

>

> Hugs and blessings,

> Gwynnie 57 Single-lung transplant on 4-3-08 at

> UTHSC San , TX

>

[Guest guest]

Gwynne, you are the poster child for a perfect transplant. It all just

fell together for you after being listed in San , and you

continue to amaze all of us.

BUT, here is the flip side to your story.

I have a friend who turned 48 last month. He got the call 2 weeks

before Christmas and had a double lung transplant. He is STILL in the

hospital in California, with hopes of being sent home to Oregon to

continue his rehab closer to his wife and daughter. No one ever

thought it would take him this long to recover. It's been a terrible

struggle for him and his family, but he's finally turned the corner.

He still can't speak and isn't writing right now so I don't know if he

would say it was worth it or not.

So there are many variations on what can happen, and I don't know for

certain what makes the difference. My friend is relatively young, and

was in good health other than the PF. Another woman I knew was in very

good physical shape, but died not long after her transplant. A 24 year

old is being re-listed due to failure of the lungs she received from a

17 year old. I've known more sad stories than happy ones in the 4

years I've been on a PF board.

I cannot have a transplant because of all my auto-immune diseases. I

asked again recently and was once again told " no " . The Docs feel that

the recovery would take many months ( I don't tolerate surgery well

and I don't heal well) and that I would likely not live for more than

2 years and those would be spent for the most part in the hospital or

emergency rooms or the doctor office. Not the quality of life I choose

for myself or my family.

Doctors have to think out all sorts of scenarios and repercussions of

a transplant, and they base it on so many factors. What is possible

for one person may not be possible for another. If a doctor sounds

negative about transplant it's likely that he/she doesn't feel the

patient is a good candidate for the surgery. I would never attempt to

dissuade anyone looking for a transplant from pursuing the options but

keep in mind that the doctor usually does know best in these

circumstances. I've asked not one or two pulmonologists about

transplant, but six of them, and was given the same answer by all of

them.

Your story Gwynne has a happy ending, Thank God. I can tell you right

now that I've never heard of another person doing this well with

transplant. The Doctors should write you up in a medical journal.

Continued blessings on your healing! I hope you get to go home soon!

Hugs!

Babs in Texas

>

>

> I would implore you not to take any single person's

> opinion to heart about the pros and cons of transplant.

> I don't feel your doctor is being quite fair in weighing

> your options for you. I like docs who are very

> straightforward, but he sounds more negative than

> realistic. Everyone knows there are risks, some of which

> can be serious, and there are many medications, some

> of which cause serious side effects.

> But I'm only 5 weeks out from a single-lung transplant

> and I feel like a different person altogether. People can

> hardly believe it when they see me. I was on 18 liters with

> exertion, but that really wasn't cutting it anymore. I had

> reached a point where my sats fell into the 70's doing

> almost anything. I coughed a great deal. I had to let my

> physical therapist go, as I wasn't capable of doing the

> activities anymore. I got worse every week during the

> month of March. I tried to stay as active as possible, by

> getting out to have lunch with a friend or whatever, but

> just getting dressed to go out took a tremendous toll on

> me. Showering was a bitch. My doctors and I knew I was

> dying, and I'm 57 years old. I had some extenuating

> circumstances (blood type and antibodies) which we knew

> would likely extend my time on the list. I was double-listed,

> in Dallas (for 13 months) and in San (for 7 weeks).

> My life was all about the hose up the nose. I was on

> continuous 02 almost since my VATS in 2004. I probably

> had IPF 3 years before that. I was a very, very sick woman.

>

> My surgery was on my birthday. It went so smoothly that it

> took only 2 hr. 20 minutes, and there were and have been

> no complications so far. I can take a deep breath in and out,

> and oxygenate on room air at 97-99%. I've been so inactive

> for so long that I'm quite out of shape, and my large muscle

> groups aren't used to getting all that oxygen. That, plus

> being only 5 weeks out from MAJOR surgery, mean I still

> get a tiny bit winded on my walks around the apartment

> complex, but not bad. And I can talk while I walk. I still

> have to be a little careful about not hopping out of a chair

> too quickly in order not to feel a little light-headed. But I

> don't cough - ever. I sleep well. I feel like the old me, and I

> never thought I'd feel that again even with a transplant.

> My liquid oxygen is already gone from my home, so I won't

> even have to look at it when I get there.

>

> With IPF, you give up so much and grieve so many losses.

> Now I breathe a prayerful thanks for every morning and

> every night that I have this second chance. I breathe deep

> breaths for this group when I pray for them. My doctors are

> ecstatic that things are going so well. I was released from the

> hospital after a week, and I will probably get sent back home

> to Ft. Worth the end of next week (the 6 week mark). The

> difference in pre- and post-transplant is very dramatic, and

> my ONLY complaint is tremors from the anti-rejection meds.

> But they've already decreased them and my Prednisone (I'm

> down to 30mg daily - usually down 5mg per week) so maybe

> that'll get better. I was never delusional, exceedingly grumpy,

> hysterical or moody. I never had nightmares. I was only on the

> vent for 24 hours. I got anxious a couple of times, but that's

> a trade-off well worth it in my book.

>

> I feel like a walking miracle, and I would encourage you not

> to rule out the possibility of transplant in your future. Bruce

> said I'm making it look easier than it is, but everyone (3 other

> people) who were transplanted here the same week as I was

> are also doing spectacularly well and recovering quickly. My

> transplant team is excellent! I just love the whole lot of them.

> Oh, YES, there was pain from the incision, and probably I'll

> have intermittent discomfort from that (thoracotomies HURT-

> they go in from the back and side vs. down the front) for

> a long time. But it's certainly bearable. But I take only Extra

> Strength Tylenol if anything now, and I am able to wear a bra

> again, which they didn't think I'd be able to yet. My point is,

> yes I've been fortunate and blessed, but there are a lot of other

> success stories out there, and I've met some of them in person.

> They look and feel great, and most have resumed totally normal

> lives. And even if I hit bumps in the road, I will still be glad I

> did this, even if only for the time I've had so far. My life was

> one big dead-end bump before. This has been a remarkable and

> phenomenal experience - the most amazing thing that's ever

> happened to me, for sure (well, and the births of my children).

> And I've been given this time for precious life that I wouldn't

> have had otherwise. For me, this was was an option I had to take.

>

> Since April 3, my daughter's gotten engaged and I'll be able

> to go to that wedding without oxygen. And I WILL be on the

> dance floor in September. I will also be taking a trip to Colorado

> sometime in the fall, which makes my heart joyful just thinking

> about. I'm simply asking you to keep your options open. Best of

> luck to you.

>

> Hugs and blessings,

> Gwynnie 57 Single-lung transplant on 4-3-08 at

> UTHSC San , TX

>

[Guest guest]

Babs

I know the same cases you speak of and its a reason many facilities

don't want to list you until you're nearing the end without one. I know

today I wouldn't have one because my quality of life without isn't bad.

I've heard the statement made that its trading one illness for another.

No, its not generally. It's between death and transplant.

For instance your 48 year old friend. Yes, he's been through some bad

times. But today he's improving and he's alive. I don't know where his

illness was at the time of transplant, but he might well not be alive

today. I think in his case he would tell you today is worth what he's

been through.

The 24 year old would she be alive today without the one she had. I know

a 26 year old who had one five years ago and was told that she was

rejecting it and sometime would need another, but doesn't yet. Well,

she's gotten five pretty good years and who knows how many more before

or after a re-transplant.

As to death, thats true within the first year in anywhere from 5-15% of

the transplants, depending on the facility. But 5-15% beats 100% in more

listed persons minds.

Now, that said, the thought of not surviving the surgery doesn't impact

my feelings because at the time I would get one I would know i wouldn't

survive without one. What I see as needing to evaluate is the ability to

deal personally with post-transplant. That involves many questions. For

instance, could I take the amount of prednisone required without mental

illness problems returning full force? (I don't know). Could I

effectively do the exercising and follow the diet? (Yes). Some of the

challenges are complex. Some sound simple but may not be. An example: 24

hour custodial care (someone always with you) for at least 6 weeks

after. And, insurance and medicare won't cover that as its considered

custodial care. So, its family and friends or paying for it or a mix.

Looking at the information you present, I would tend to agree at least

today that you'd be a poor candidate. Its different for all of us.

You're right in that Gwynne is the poster child. But she did work hard

before it to be prepared. I know I would not want one too soon. As the

doctors say I want to get all out of these lungs I can. I don't honestly

know yet nor do I need to decide if it would be right for me at the

stage Gwynne reached before. I don't know what other issues I'll have by

then nor how the surgery might have changed nor how I feel I could

handle the challenges. I don't even know if I'd be eligible. I figure

every day is a chance to gather more information toward the decision.

Also, I think I would be less likely being single with no kids. I know

if I had young kids my desire to go through anything for extra time

would be much stronger.

I'm just trying to stay open to both choices until I have to decide.

Now, I also think the listing process helps those for whom it isn't a

good choice determine that in their mind of have it determined by others

for them.

It comes as another decision in which one compares quantify versus

quality of life. The fact is that if the practice is not listing unless

considered to be in the last year of life (some facilities have this

others don't) and if 60% are living five years then I think its fair to

assume nearly 0% would live five years without one. So its 60% odds of

five years versus what one feels their quality of life would be. In your

case of 2 years maximum mostly in hospital that isn't getting much

quality of life or quantity.

> >

> >

> > I would implore you not to take any single person's

> > opinion to heart about the pros and cons of transplant.

> > I don't feel your doctor is being quite fair in weighing

> > your options for you. I like docs who are very

> > straightforward, but he sounds more negative than

> > realistic. Everyone knows there are risks, some of which

> > can be serious, and there are many medications, some

> > of which cause serious side effects.

> > But I'm only 5 weeks out from a single-lung transplant

> > and I feel like a different person altogether. People can

> > hardly believe it when they see me. I was on 18 liters with

> > exertion, but that really wasn't cutting it anymore. I had

> > reached a point where my sats fell into the 70's doing

> > almost anything. I coughed a great deal. I had to let my

> > physical therapist go, as I wasn't capable of doing the

> > activities anymore. I got worse every week during the

> > month of March. I tried to stay as active as possible, by

> > getting out to have lunch with a friend or whatever, but

> > just getting dressed to go out took a tremendous toll on

> > me. Showering was a bitch. My doctors and I knew I was

> > dying, and I'm 57 years old. I had some extenuating

> > circumstances (blood type and antibodies) which we knew

> > would likely extend my time on the list. I was double-listed,

> > in Dallas (for 13 months) and in San (for 7 weeks).

> > My life was all about the hose up the nose. I was on

> > continuous 02 almost since my VATS in 2004. I probably

> > had IPF 3 years before that. I was a very, very sick woman.

> >

> > My surgery was on my birthday. It went so smoothly that it

> > took only 2 hr. 20 minutes, and there were and have been

> > no complications so far. I can take a deep breath in and out,

> > and oxygenate on room air at 97-99%. I've been so inactive

> > for so long that I'm quite out of shape, and my large muscle

> > groups aren't used to getting all that oxygen. That, plus

> > being only 5 weeks out from MAJOR surgery, mean I still

> > get a tiny bit winded on my walks around the apartment

> > complex, but not bad. And I can talk while I walk. I still

> > have to be a little careful about not hopping out of a chair

> > too quickly in order not to feel a little light-headed. But I

> > don't cough - ever. I sleep well. I feel like the old me, and I

> > never thought I'd feel that again even with a transplant.

> > My liquid oxygen is already gone from my home, so I won't

> > even have to look at it when I get there.

> >

> > With IPF, you give up so much and grieve so many losses.

> > Now I breathe a prayerful thanks for every morning and

> > every night that I have this second chance. I breathe deep

> > breaths for this group when I pray for them. My doctors are

> > ecstatic that things are going so well. I was released from the

> > hospital after a week, and I will probably get sent back home

> > to Ft. Worth the end of next week (the 6 week mark). The

> > difference in pre- and post-transplant is very dramatic, and

> > my ONLY complaint is tremors from the anti-rejection meds.

> > But they've already decreased them and my Prednisone (I'm

> > down to 30mg daily - usually down 5mg per week) so maybe

> > that'll get better. I was never delusional, exceedingly grumpy,

> > hysterical or moody. I never had nightmares. I was only on the

> > vent for 24 hours. I got anxious a couple of times, but that's

> > a trade-off well worth it in my book.

> >

> > I feel like a walking miracle, and I would encourage you not

> > to rule out the possibility of transplant in your future. Bruce

> > said I'm making it look easier than it is, but everyone (3 other

> > people) who were transplanted here the same week as I was

> > are also doing spectacularly well and recovering quickly. My

> > transplant team is excellent! I just love the whole lot of them.

> > Oh, YES, there was pain from the incision, and probably I'll

> > have intermittent discomfort from that (thoracotomies HURT-

> > they go in from the back and side vs. down the front) for

> > a long time. But it's certainly bearable. But I take only Extra

> > Strength Tylenol if anything now, and I am able to wear a bra

> > again, which they didn't think I'd be able to yet. My point is,

> > yes I've been fortunate and blessed, but there are a lot of other

> > success stories out there, and I've met some of them in person.

> > They look and feel great, and most have resumed totally normal

> > lives. And even if I hit bumps in the road, I will still be glad I

> > did this, even if only for the time I've had so far. My life was

> > one big dead-end bump before. This has been a remarkable and

> > phenomenal experience - the most amazing thing that's ever

> > happened to me, for sure (well, and the births of my children).

> > And I've been given this time for precious life that I wouldn't

> > have had otherwise. For me, this was was an option I had to take.

> >

> > Since April 3, my daughter's gotten engaged and I'll be able

> > to go to that wedding without oxygen. And I WILL be on the

> > dance floor in September. I will also be taking a trip to Colorado

> > sometime in the fall, which makes my heart joyful just thinking

> > about. I'm simply asking you to keep your options open. Best of

> > luck to you.

> >

> > Hugs and blessings,

> > Gwynnie 57 Single-lung transplant on 4-3-08 at

> > UTHSC San , TX

> >

>