Finally Transplant News!

[Jean]

Lisa, I am so glad for you that your listing came through. Here's hoping you improve on your own and don't need it, but just to be there in reserve if you do need it. Are your lungs improving at all since surgery? Some people have had that added benefit. God bless.

 

[EVELYN]

Hi Lisa.....SOOOO glad that you are now listed!!! WOW!!! Keep feeling well and doing your thing and all will work out, you're too nice a person for it not to.

Evelyn

 

[Lisa45]

To ALL

To ALL

Thank you all for your support! I am very happy about it all. I haven't had any lung surgery yet except for the open lung biopsy. I am keeping a level head. My lungs have not improved I am still at 33% DLCO and the fibrosis is the same. They will test my heart valve and kidneys every 3 months to make sure they are okay. If I stay this good they will deactive me in a year, but in the meantime I can make up time.

Lisa

 

[Vicki448]

Lisa,
What wonderful news. I am so happy for you and will continue to keep you in my prayers. God is good and will provide. I wish you only the very best of luck.

 

[mamsram]

Lisa,

It looks like your in good hands. Enjoyed reading the good news, however, I have a question. Are you sort of approaching a fork in the road, that is, if you improve you're off the list and if you don't or worsen, you stay on the list? It seems like an upbeat road ahead to me.

I stopped short when I saw that word deactivate. That word I usually see when reading about missles, battleships, airbases and nuclear warheads. You aren't a secret weapon or somthin, are you??
Keep smilin and horay for you!

 

[pegne]

Lisa

Lisa

I'm so happy to hear that you things are moving along. I wish you the best. As far as the TEE I have had 4 or 5 of them and they do pick up more than the Echos do. I also think they get a more accurate reading on mercury levels and such. As far as the procedure itself you won't know a thing. You will be way off in lala land. You are also correct when you say that aortic valve will not repair itself.

 

[Lisa45]

To mamsram

To mamsram

What they were meaning about deactivate is that if I stay stable for the next year or two and don't continue to get worse than they would put me on the in active list, however I wouldn't loose all the time I saved up. So if I got bad two years from now I wouldn't have to start all over that time is allready stored and I wouldn't loose my place in line. Make sense?

Lisa

 

[Lisa45]

To pegne

To pegne

Thanks for your good wishes and prayers I appreciate it. I have only had 1 right and left heart cath. and Thallum test (didn't like that one). Do you have Aortic damage. Mine is Moderate to Severe but the EF changes. Did yours?

Lisa

 

[Ross]

Lisa, don't be overly concerned with the EF numbers. They change from day to day and test to test. What might be good or bad today, may be good or bad tomorrow. It's one of those things that get a number as the test(s) go along. In fact, each test you take will have a different EF figure.

Would you mind elaborating on why you didn't like the thallium test?

 

[Lisa45]

To Ross

To Ross

The reason I hated the Thallium test so much is that it hurt like crazy! I didn't do the treadmill they i.v. induced me with whater to stimulate exercise. It felt like I was having a heart attack! It was scary for me.

Lisa

 

[Ross]

I asked only because I had a bad time with mine. I didn't have any pain, but shortly after the test, I couldn't breath and started turning blue in the waiting room. Of course, that got the nurses and Doctors attention pronto. It took me a long time to get reoxygenated from that episode.

 

[Jessica_B.]

Listing and waiting...

Listing and waiting...

Wow, I don't mean to be a downer -- I was thrilled about being listed and it sounds cool that they don't make you redo the entire waiting process if they decide you have improved.
Here the organ shortage is so tangible that they are very strict about placement - if you improve to the point where you are pulled off active waiting (i.e. not on list anymore) you go through another round with the evaluation and you start off from scratch, no talk about being placed back in the same spot on the list. You queu all over again with the subsequent evaluations of placement as you wear on. They don't even call it active vs. inactive waiting, you are on or off the list, and the selection can be brutal process. One of my closest friends were taken off the list and when she needed to go back on she had developed comorbid conditions and wasn't eligible.

With the kind of problems I have had after my transplant, especially regarding reactions to medications but also with infections I hope you will improve to the point where you will need no transplant.

All my best,

/Jess

 

[Lisa45]

To Jess & Ross

To Jess & Ross

Ross,

I bet that sure got the staff jumping! Yea, my Thallium hurt quite a bit, felt like I was having a heart attack.

Jess, where are you located? I am in Texas. That is one good thing about being inactive and not loosing your place in line. If it makes you feel any better this is my second time through, the first time was a year evaluation at St. Paul and this time a year through Baylor. To be honest I would not do it again, I am sure of that.

 

[hensylee]

Hey, Jess - so good to see you. It's been awhile. Sounds like you have had some ups and downs, but I pray that it is more ups than downs. My good wishes are always yours. Love, Ann

 

[Jessica_B.]

Lisa & Ann...

Lisa & Ann...

Lisa,
I live in Sweden. I went through transplant evaluation in the 11th hour basically when I had gone from a fairly normal ef of 46 per cent to a not so normal ef of 9 per cent in a matter of months and had end stage heart failure. If I had been taken off the lift and had to be evaluated again I would have been denied, that time for being too sick.
Being transplanted is a strange game but I was in no way implying that you don't deserve to be listed, far from, just make sure that they do not take you for a run for your money so to speak. But hey, go for it! Being on the list is better than not being on it. I can be too cynical for my own good at times, you have my permission to whack me over the head with something hard if I crossed the line .

Ann,
Yeah, the ups and downs continue. The drugs are unfortunately required for me to stay alive, yet they are very strong for my system. During the autumn I required surgery on a femoral artery and then I landed myself in the hospital in November and came home two weeks ago with an additional diagnosis of osteoporosis from all the prednisone . But I am feeling pretty good most of the time so I shouldn't whine too much.

All my very best to you both!

/Jess

 

[Lisa45]

To Jess

To Jess

I totally understand. Except mine is for a double lung transplant not the heart. In addition to the heart I have aortice valve regirgutiation. EF is at 60% and kidney problems with a cyst on my kidney. Other than that I am great!

 

[hensylee]

Jess - sorry to hear of your surgery re the femoral artery - guess they cleared that up? I have osteo and it's not any fun. Just be careful on that Swedish ice! No broken bones, please.

 

[Lisa45]

To hensylee

To hensylee

Hensylee,

I also have Osto. was taking Fosomax for years they just recently switched me to Actenol I do it once a week on Sundays. I have bone density tests every 3 months. Mine was caused becuase I had an emergency radical hyster. at 33. Your right don't break any bones!
Lisa

 

[hensylee]

Gosh, you girls are too young for osteo - but not impossible, I guess. I take Fosamax weekly, too. Doesn't seem to make much diff, tho it may be doing its job and I just can't tell. Bone density every 3 months? Goodness. I have had one - 36% loss -

 

[Lisa45]

Hensley

Hensley

Hensley,

I know I am 45 but had complete Hyst. at 33 so the Osto isn't surprising that and Steriods for the lung condition. I was on Fosomax for years just got switched to Actenol once a week also because it is supposed to work better who knows. I have bone density every 90 days.

Lisa