Upcoming tx evaluation w surgeon

[Naynay99]

Hey. So I recently went for evaluation appt at tx center, and the next step was aupppsd to be them sending me a list of tests to get done and scripts for them.

I got that letter in the mail and spoke to the tx coordinator, but she said I need to meet with the tx surgeon first bc I have had a prior tx and also for weight discussion.  The doctor I saw at first appt  said I was a good candidate for tx, but maybe the surgeon does not agree??

I was already told I need to lose some weight as it will decrease recovery time after surgery.  Bug what does having a second tx have to do with it- it’s not like I have medical records from 30 years ago to tell them what it looks like in there!

-Does anyone know what exactly will this appt entail? Should I bring someone with me?  I have already gotten dental check, mammo, Pap smear tests done.  Have to do ekg, echo, chest X-ray and blood work still but she made it sound like they r waiting on those until after I meet w surgeon- is this so I don’t waste time doing them if he changes his mind about me being a good candidate? I’m so exhausted already with this whole process and feeling completely alone and overwhelmed.

Oh and I also need a letter from my psychiatrist and therapist saying I’m stable enough for a tx.   So being too crazy could disqualify me too! It’s kiat so much. 

Yesterday I lost power bc of recent storm so I have no heat now.  Life seems to just keep sucking more everyday and I don’t know if I have it in me to survive all of this. 
Take it easy everyone. 

[Simon Dog]

it’s not like I have medical records from 30 years ago to tell them what it looks like in there!

The transplant center that did the work will almost certainly have the surgical report, though it may be on paper or microfilm due to the age.   Just request a direct transfer of records to your new center.

[SooMK]

I suppose a second transplant might be a little different but I know when I met with the surgeon for my transplant 4 years ago, it seemed like a formality. Meeting him was the last box that needed to be checked off. He had an emergency and I had to wait several hours for him to be able to meet me. And when he showed up I didn't really have any questions and he didn't really have any for me, so it was kind of a non-meeting. It was very brief. But I appreciated meeting the person who was going to do this. I could have been better prepared, for sure, but that's me, I wasn't. Some people may have a lot of technical questions. Hopefully it is the same for you.

[Naynay99]

Thanks.  During my first tx I remember my mom had to ask to meet the one surgeon as they were getting ready to wheel me in to surgery!
This doesn’t sound like a formality.  She said I had to do this appt first- before they would even send me the scripts for testing,  so it sounded to me like they didn’t want to bother doing more testing in case the surgeon says no.  Idk.  Maybe I’m over thinking it.  My appt is next week.  I guess I will update you all then.   I’m feelinh rather overwhelmed. 

[SooMK]

Oh I see. It does sound like there's more to it. I'm glad it's coming up soon and hope all goes well.

[Naynay99]

So I had my appointment on Friday.  The surgeon answered my questions and examined me.  While she wants me to lose some weight so I am as healthy as possible before the tx, she said my current weight would not prevent me from being listed.  So I am one step closer!  I have upcoming appointments for blood work, a cardiac stress test, EKG, and echocardiogram.  The tx surgeon was hopeful about my brother being a donor and how it would allow for a preemptive transplant, so I really do hope that all works out.   I am trying not to get my hopes up too much in case it doesn't work out or he changes his mind, but it does give me some hope that maybe there is light at the end of the tunnel besides an oncoming train. 

I am going to be meeting with my nephrologists dietician, my goal is to lose some weight and follow a more renal friendly diet to buy my kidney some more time.   I do know that yesterday I went for a short hike in the snow and I felt exhausted.  So that kind of sucked.  I want to start swimming again to get in shape, but now I'm worried I won't have enough energy to work out.  I'm so tired after working all day.  But Im to going to try.   Just getting on the list and all these appointments is overwhelming.  Then it just keeps getting harder.  I'm scared I just gonna lose it one of these days bc I suck at coping with all of this.  Anyway wish me luck that all my testing goes okay and that I get on the list sooner rather than later.  Take care. 

[MooseMom]

You are absolutely right; doing all of the bits and bobs to get on the list CAN be overwhelming when looking at it as a whole, so a good trick is to break it all down and tackle each test, one by one.

When you are finding it hard to come, you just come to talk to us!

[Cupcake]

I hear ya, Naynay. My transplant center said get your bmi down to X, and we'll talk, so when I went back at bmi X, they said, " hey, you're doing great, now get it down to X minus another 25 lbs.!" So I did, and not easy on PD when you're flooding your body with sugar water every night. But I started slow, walking for short distances and swimming. I started just swimming up and back, then water walking up and back, etc. now I swim continuously for 40 minutes twice a week and walk 3 miles the other days. I feel better than I have for years. I mix up the walks to keep from getting bored, depending on the weather inside on a treadmill or on the local paved trail or in the forest. I always bring my tunes, except in the woods I like to hear the birdies.

 But remember, 80 percent of weight loss is dietary, 20 percent exercise, but exercise is a stress buster. Good luck, you can do it if I did! I started out an old lady with heart failure, now I'm a gym rat!

[Naynay99]

Thanks.  Hearing that you were wuccessful in losing weight and getting back into exercise is encouraging. 
All the tests and requirements to get listed for a transplant make sure you really want it! 

I have to get a letter from my psychiatrist saying I am psychologically stable enough to go through a transplant.  The coordinator said they basically just want clearance that if something went wrong i would be able to mentally cope with it.  Which I don’t think I would if the tx didn’t work, but I will get a letter nonetheless stating what they want to hear.

I also need to get a skin cancer screening.  Had a mammogram and annual Pap smear and dental exam already.   
I really don’t know if I can see my brother following through on all the tests a prospEctive donor has to do, but I am trying to stay positive and hopeful.  One step at a time.  Because if I look at the whole picture my mind will self destruct from the enormity of it all.

  I know I probably sound all woe is me, and I am not even on dialysis yet, it only gets worse until the tx.  I just suppose I need to vent.  It’s shocking how alone one can feel in a room full of people when none of them could possibly understand what this all feels like.   When coworkers complain about dumb crap I have to hold my tongue to not say something- your cable was out due to the storm?  That’s the worst thing happening in your life?! Really, it must be nice to wake up and take for granted the belief that your organs won’t just crap out on you at any time. 

The new tx coordinator asked me, “why did your last tx fail?”   I just sat there and shrugged and said 29 years is a far cry from a “fail”.  I guess she hadn’t read my file yet; they are the ones who say how tx isn’t a cure../
Anyway thanks for listening to my rambling.