Has anyone had a pre-dialysis transplant?

[Falkenbach]

Gosh I'm starting to get frustrated with some of the staff involved in my upcoming transplant. Most of them are very good, but I'm annoyed that every time I get told "this is the last test and then we'll set a date" it seems I get another call saying "oh we just want you to have this test..." and it's a 2-week wait to get in.

Right now they're going to send me for another bone scan. I'm not sure why this needs to be done prior to the transplant. We  know I have osteoporosis, I've had 2 scans before.

Grrrr, I just want it over with.

Can't really complain about the staff over all, though. They are very professional and dedicated at the Queen Elizabeth Hospital where the transplant will be taking place.

[Falkenbach]

Okay, some news finally.

Dad has been contacted by the team who have booked him/me an appointment to come and see them on the 26th April, at which time they will discuss a date for my transplant.

  

[Hawkeye]

Congrats and Good Luck.

[George Jung]

I hope everything goes smoothly for both of you!  Good luck.

[goofynina]

Okay, some news finally.

Dad has been contacted by the team who have booked him/me an appointment to come and see them on the 26th April, at which time they will discuss a date for my transplant.

  

Right on Cycobully, good luck to you and Dad,  please come and post  how everything went, i know this is just the beginning of your journey but just remember, you have all of us here praying for ya (and waiting to hear some good news)   

[angela515]

Yay cyco!!! Keep us posted. 

[Falkenbach]

In a downer of a mood today. Saw myself in the mirror, and how sh**house I am looking. My skin is sallow, my eyes are puffy - and all I could think was "I'm gonna look worse after the transplant and medications". I know that's a small price to pay for life but it is just one of many things that gets me down.

I'm tired of this yo-yo mood. Can't wait to get some energy back and hopefully be happy again.

Sorry for the big whinge, but all I can do is cry today. Jeez, I should be happy.

[Falkenbach]

Update.....

Creatinine has gone up to 500. Bear in mind that I weigh under 110 pounds. 

My physician has today said that it's possible the renal team might decide to put me on a few weeks of dialysis prior to the transplant. We'll see what they say when I have my appointment with them next week.

If that's what they think is best, then that's what I'll do.

Also my phosphorous has gone back up to 2.7, so that's really high. I'll have to go back to watching my diet and doing a better job of taking my binders.

[Jill D.]

In a downer of a mood today. Saw myself in the mirror, and how sh**house I am looking. My skin is sallow, my eyes are puffy - and all I could think was "I'm gonna look worse after the transplant and medications". I know that's a small price to pay for life but it is just one of many things that gets me down.

I'm tired of this yo-yo mood. Can't wait to get some energy back and hopefully be happy again.

Sorry for the big whinge, but all I can do is cry today. Jeez, I should be happy.

Cycobully...please know that you will feel so much better after your transplant, and you will look better too. The puffiness will go away from your eyes because you won't be retaining fluid, and your color will improve a lot. True, the meds at first may make you somewhat "bloaty", but most transplant centers these days start tapering down the meds right after the transplant. I am 4 months post-transplant, and with the exception of some extra "padding" around my mid-section (which I'm working on getting toned!) I look like my old self...but better because I am now so much healthier and it shows in my skin, hair, etc.

I had the same fears as you, and I just want to let you know that you have such a wonderful, energetic, happy life to ahead!

[angela515]

In a downer of a mood today. Saw myself in the mirror, and how sh**house I am looking. My skin is sallow, my eyes are puffy - and all I could think was "I'm gonna look worse after the transplant and medications". I know that's a small price to pay for life but it is just one of many things that gets me down.

I'm tired of this yo-yo mood. Can't wait to get some energy back and hopefully be happy again.

Sorry for the big whinge, but all I can do is cry today. Jeez, I should be happy.

Jill stated it very well. Just to add to it, the first thing everyone told me DIRECTLY after I woke up from surgery was "Wow, you got your color back, you dont look pale anymore."  You will look and feel so much better. 

[Falkenbach]

That's good to hear - I can't wait!

The longer the wait for the transplant, the more anxiety I get. I want it done! Soon!

Next week my dad has his appointment where they will apparently start discussing a date for the op.

[Falkenbach]

DAMMIT!!!

And so the saga continues......

Today my parents heard from the hospital and now they've been told that they want to do a psychiatric assessment on my father, after all. Initially they had pretty much said they were happy to just do the assessment on me, and that dad wouldn't need one.

So that means yet another week needed for another appointment, pushing my possible operation date back - which means I will be more likely to end up on dialysis after all.

I'M SO AGGRAVATED BY THIS. 

I'm not angry with the renal team, I think they're all really top people. But the way it's working out is just - well, taking longer than I wanted, and causing me anxiety. The whole point was to do a pre-emptive transplant and avoid dialysis. darn darn darn DARN it.

[angela515]

DAMMIT!!!

And so the saga continues......

Today my parents heard from the hospital and now they've been told that they want to do a psychiatric assessment on my father, after all. Initially they had pretty much said they were happy to just do the assessment on me, and that dad wouldn't need one.

So that means yet another week needed for another appointment, pushing my possible operation date back - which means I will be more likely to end up on dialysis after all.

I'M SO AGGRAVATED BY THIS. 

I'm not angry with the renal team, I think they're all really top people. But the way it's working out is just - well, taking longer than I wanted, and causing me anxiety. The whole point was to do a pre-emptive transplant and avoid dialysis. darn darn darn DARN it.

I'm sorry they can't these appointments sooner for you all and move them along faster. Seems if they know the point is to try and get this transplant done BEFORE dialysis, and dialysis is getting close, they would move things along.. as the have the powr to do so.    Keep your head up.

[Jill D.]

I know it's hard, but hang in there and try not to get too stressed! My surgery was scheduled 3 times before it finally happened, and while it was certainly a disappointment each time it had to be rescheduled, I am convinced that it happened when it was supposed to since everything turned out so well, without any complications or setbacks. Try if you can to keep your mind busy on other things so this craziness doesn't consume you!