Re: Transplant evaluation.

[Guest guest]

Ze ... I'll send my prayers along to you too. I can imagine how overwhelming it must be to take in everything you need to know and then some of what you what you wish you didn't need to know!

I'm a firm believer in listening to your "gut" feelings. They never lie to us. Our head might but not our gut.

God Bless you friend.

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

Transplant evaluation.To: Breathe-Support Date: Wednesday, October 15, 2008, 2:11 PM

I've been back to see the transplant team today.

My head is spinning as we've been talking about the more unpleasant facts, figures and statistics, but all things that I need to know to be able to make an informed decision in the end.

As I have made headway with my weight they have decided to go ahead and book me in for the transplant admission, probably for january next year. It's a case of going in on the monday, having a load more tests until wednesday night, then all my details going to the transplant board on thursday morning, when they will tell me whether or not I can be listed. At that point it is my decision whether to BE listed or not.

He is disappointed that I didn't get to see the dietician sooner, and therefore haven't lost more weight, and also that I still haven't been started on any treatment for the PH. This has got worse. I thought it had as I have been feeling more breathless, but my pft's have remained fairly stable. However I have received a call from that particular hospital today, from the admissions, (I have been told that they want me in for a couple of days to put me on the meds and make sure that they don't give me any unwanted side effects) so perhaps that's sorted now.

I'm feeling quite ambivalent about things at the moment as it's too big to think of right now. I know they have a responsibility to tell me the down side, but today, I've just heard too many of them.

Love Ze xx

[Guest guest]

Ze ... I'll send my prayers along to you too. I can imagine how overwhelming it must be to take in everything you need to know and then some of what you what you wish you didn't need to know!

I'm a firm believer in listening to your "gut" feelings. They never lie to us. Our head might but not our gut.

God Bless you friend.

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

Transplant evaluation.To: Breathe-Support Date: Wednesday, October 15, 2008, 2:11 PM

I've been back to see the transplant team today.

My head is spinning as we've been talking about the more unpleasant facts, figures and statistics, but all things that I need to know to be able to make an informed decision in the end.

As I have made headway with my weight they have decided to go ahead and book me in for the transplant admission, probably for january next year. It's a case of going in on the monday, having a load more tests until wednesday night, then all my details going to the transplant board on thursday morning, when they will tell me whether or not I can be listed. At that point it is my decision whether to BE listed or not.

He is disappointed that I didn't get to see the dietician sooner, and therefore haven't lost more weight, and also that I still haven't been started on any treatment for the PH. This has got worse. I thought it had as I have been feeling more breathless, but my pft's have remained fairly stable. However I have received a call from that particular hospital today, from the admissions, (I have been told that they want me in for a couple of days to put me on the meds and make sure that they don't give me any unwanted side effects) so perhaps that's sorted now.

I'm feeling quite ambivalent about things at the moment as it's too big to think of right now. I know they have a responsibility to tell me the down side, but today, I've just heard too many of them.

Love Ze xx

[Guest guest]

Ze ... I'll send my prayers along to you too. I can imagine how overwhelming it must be to take in everything you need to know and then some of what you what you wish you didn't need to know!

I'm a firm believer in listening to your "gut" feelings. They never lie to us. Our head might but not our gut.

God Bless you friend.

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

Transplant evaluation.To: Breathe-Support Date: Wednesday, October 15, 2008, 2:11 PM

I've been back to see the transplant team today.

My head is spinning as we've been talking about the more unpleasant facts, figures and statistics, but all things that I need to know to be able to make an informed decision in the end.

As I have made headway with my weight they have decided to go ahead and book me in for the transplant admission, probably for january next year. It's a case of going in on the monday, having a load more tests until wednesday night, then all my details going to the transplant board on thursday morning, when they will tell me whether or not I can be listed. At that point it is my decision whether to BE listed or not.

He is disappointed that I didn't get to see the dietician sooner, and therefore haven't lost more weight, and also that I still haven't been started on any treatment for the PH. This has got worse. I thought it had as I have been feeling more breathless, but my pft's have remained fairly stable. However I have received a call from that particular hospital today, from the admissions, (I have been told that they want me in for a couple of days to put me on the meds and make sure that they don't give me any unwanted side effects) so perhaps that's sorted now.

I'm feeling quite ambivalent about things at the moment as it's too big to think of right now. I know they have a responsibility to tell me the down side, but today, I've just heard too many of them.

Love Ze xx

[Guest guest]

Hi Zena,

It's 10pm Friday night, here on the East Coast of the US, and I just

read your post because I have just gotten home from my 2 day, in-

patient, transplant evaluation at Brigham and Women's Hospital in

Boston. It was a long 2-days, with lots of tests, lots of blood

being drawn, and lots of consultations.

On Day 1, I checked in at 8am and was immediately sent to the blood

lab where they drew 23, yes - that twenty three! - tubes of blood.

They are using the blood for a score of different testing, including

tissue typing. After the blood work, I was off to the cardiology

department for an EKG. That was followed by a trip to radiology for

chest x-rays. Next, I was admitted and then went back to cardiology

for my cardiac catherization. This took about 40 minutes once in the

procedure room after which I went to recovery for about an hour.

Then I was taken to my room where I had to stay flat on my back for

another 2 hours, at the end of which I was finally able to sit up and

eat something (For the first time since midnight the night before!).

By this time it was 5:30pm. After dinner I was seen by one of the

transplant team doctors. Around 9pm the nurse came into the room and

told me they were sending me off to radiology again for a CT scan.

Once I got back from that, I had some toast with peanut butter and

some juice - this was because once again, nothing to eat or drink

after midnight - in preparation for my tests on Day 2.

Day 2 - up early and off at 8am for an echocardiogram, followed by

more blood work, then PFT's, and a gastric emptying study. The later

involved eating a hard boiled egg which had been treated with a

radioactive ingredient so that it would show up on a special camera -

which I had to lay under, flat on my back, for 90 minutes while they

tracked the progress of the chewed egg thru my stomach and

intestines. Next up, an abdominal ultrasound, where interestingly

enough, they found that I had a gall stone - one the doctor said I

have probably had for several years! All of this kept me busy until

3:30pm, when I was finally able to go back to my room and get ready

for discharge. However, before I could actually leave, I had to meet

with the transplant team social worker, dietitian, and psychiatrist.

I finally was discharged and got to leave for the 2 hour drive home,

at 7pm.

All in all, an exhausting 2 days, but much better than dragging the

regimen of testing and consultations out for a period of months, with

one a week or so. Yes, some of the information was scary, but much

of it was also very reassuring. One thing that worked out really

well for me was that the monthly lung transplant support group at

Brigham and Women's Hospital, was Wednesday afternoon, the day before

I had to check in. Since my check-in time was 8am, my wife and I ahd

already decided to go down on Wednesday and stay overnight.

Attending the support group meeting was a real plus! Besides a

number of people like myself, in various stages of the pre-transplant

process, there were also several post-transplant patients. Their

feedback was most helpful! That and seeing them sitting there in the

peak of health, with no tubes, no tanks, was wonderful. It really

helps to get the input like folks like them have already been thru it.

I also have bought the book which someone on here recommended

recently... " Taking Flight " by Joanne Schum. I would also highly

recommend it - it is an excellent compilation of stories from people

who have had lung transplants, about their journey to transplant and

what their transplant has meant to them and their loved ones.

I am feeling much better, much more confident that this is the right

path for me - that whenever it becomes medically necessary, I will

take the step and get the transplant.

Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

56 NH

>

>

> I've been back to see the transplant team today.

>

> My head is spinning as we've been talking about the more unpleasant

> facts, figures and statistics, but all things that I need to know

to be

> able to make an informed decision in the end.

>

> As I have made headway with my weight they have decided to go ahead

and

> book me in for the transplant admission, probably for january next

year.

> It's a case of going in on the monday, having a load more tests

until

> wednesday night, then all my details going to the transplant board

on

> thursday morning, when they will tell me whether or not I can be

listed.

> At that point it is my decision whether to BE listed or not.

>

> He is disappointed that I didn't get to see the dietician sooner,

and

> therefore haven't lost more weight, and also that I still haven't

been

> started on any treatment for the PH. This has got worse. I

thought it

> had as I have been feeling more breathless, but my pft's have

remained

> fairly stable. However I have received a call from that particular

> hospital today, from the admissions, (I have been told that they

want me

> in for a couple of days to put me on the meds and make sure that

they

> don't give me any unwanted side effects) so perhaps that's sorted

now.

>

> I'm feeling quite ambivalent about things at the moment as it's too

big

> to think of right now. I know they have a responsibility to tell

me the

> down side, but today, I've just heard too many of them.

>

> Love Ze xx

>