News (sorta) about transplant!

[Brianna!]

Yesterday my transplant people called my mom. They had a meeting with my doctor who will do something about my bladder. He said as long as I am strict about self-cathing my self every 3-4 hours, he just wants to close it up! I don't know what "It" is. But close something up, so I don't leak anymore. I was told that I need to have my bladder enlarged, and if I don't then the transplant will fail right away???!!! So I'm very very very mad that he just wants to close me on up! I don't have faith in this doctor anymore. Even though my mom does. One time he asked me if I took motrin when I had a fever. Uhh...NO! I can't! Duh!!

He wants to close me up as soon as possible. Because I need to heal three months before I can be active on the list. But I can have it closed up after my transplant. But If I have this surgery before my transplant, I won't be active on the list untill about june. I just want a new kidney!

I have an appointment with him on January 25th. Right after my birthday (23rd)! Hopefully I will have more faith in him after the appointment...

I'll keep you guys updated!

Brianna <33

[Chris]

As for the doctor, find a doctor you trust, not who your mother trust, it is your body and health. You alone need to be in charge of your health and maintain it as best as possible with doctors you feel comfortable with.

Ok that's as much of a pep talk I can give.

Hope you find and get answers your looking for.

[Brianna!]

Chris, this doctor at the adult hospital attached to children's that I saw for my botox for my bladder I trusted alot. If my doctor at children's won't do a bladder enlargment surgery for me, I'm going to go over there. When those two doctor's talked, they said I can choose where I want to have the bladder enlargment surgery done. So my doctor at children's talked to the other doctor and they agreed to do something besides "close me off!"

My doctor at children's is getting a tad bit old. lol. He keeps acting like he's 20 and doing dangerous things. And he just broke his hip last year! That's why I had to go to the adult hospital for the botox. I've had this doctor for my bladder stuff, since I was 4. So I usually do trust him. I just don't know why he just wants to close me up!?

[RichardMEL]

I agree with Chris that it's SO very important to be comfortable with and confident in your care team - specially the doctors looking after you. It is your body and you should have a right to make your own decisions concening your treatment and who treats you - you're old enough and understand what the deal is I think. I realise this could cause some issues with your mom but I think you and your wishes should be the guide here. If you have no confidence in those treating you that's going to make things that much harder IMHO.

At the very least I think it is reasonable for you to seek a second or even third opinion on your situation - I hope your mom will support your decisions.

About the bladder being smaller causing a transplant to fail? I am not too sure about that but I have been told that for those of us on dialysis on restricted fluids that our bladders naturally shrink and that post transplant one reason to drink a lot is to help enlarge the bladder again to get used to the bigger volumes of fluid that will go through it.

[Chris]

Richard, my bladder is scarred and cannot get bigger, but it is not bad enough for anything to be done.  Brianna's situation maybe similar to where the scarring is so bad that something needs to be done for the small bladder that could cause issues with urine back flow if self cannulation is not done routinely..

[Brianna!]

Yes Chris. It's similar to that. My kidney's failed because urine backed up into my kidneys.

[RichardMEL]

oh shoot. that's serious

 

[Phraxis]

Have they evaluated a bladder and kidney transplant as an option?

Have you looked into the current research on growing organs -- I read recently that they have grown and transplanted a bladder?

In the meantime, ask questions, get second opinions, be proactive about your treatment options. Good luck!

[Brianna!]

My bladder isn't the problem. I was born missing part of my tailbone. And the part that's missing has the nerves that allow me to hold in my urine. So the only solution for that is basically stem cellls. So that kinda sucks.

[Brianna!]

Update!

So apparently my doctor and transplant mis-communicated? He is still going to do the bladder enlargement. And then close me off, if I want him too. It's scheduled for March 2nd. I have to go to dialysis March 1st at children's and do dialysis at 8 in the morning. And then have an NG (?) tube after dialysis. That will suck. They might be able to bring a dialysis machine up to me on Wednesday (the day after the surgery) because i'll be out of it, and there's going to be a bunch of tubes and stuff. They might not have room at dialysis for all that stuff. But a good thing about the surgery (besides i'll get a transplant!) is that the scar on my stomach, my doctor said he can take some of that away! I don't mind it, but when I get my period it streches and burns. It's annoying.

The surgery itself takes 6 weeks to heal. 3 months after the surgery I can be active on the list!! So June 3rd! About. Almost a year after I was inactive on the list!

[Chris]

That's good news Brianna, the NG tube will be inserted when your asleep so you won't feel a thing. It's when they take it out is the bad part.

[lou]

Great news Brianna, you are getting closer all the time! x x 

[Brianna!]

 
So guys, I had the surgery. I got out of the hospital on Thursday. Oh boy. I have alot to tell you all!!

On Monday March 1st, I went to dialysis at Children's hospital and then after dialysis I was admitted to the Hospital to start the bowel prep. I did one cup of the golightly stuff. and I said no way! Just give me the tube!! So they tried with the tube like four times! two times in each nostril. Once it even came out my mouth! It was horrid. But they got it in finally. You guys would not believe how long I was on the toilet with the go lightly stuff!!! 11 HOURS. YES YOU HEARD ME. I went though two jugs of the stuff. And my poop still wasn't clear! So they paged the doctor, and he said it was alright. It was 3:30 by the time they took the tube out of my nose and let me lay down.

Tuesday March 2nd-The surgery was at like 8 in the morning. It lasted 7 hours. I lost some blood, I guess. But not enough that they had to give me a transfussion. They gave me a pain button, and I slept most of the day.

Wednesday March 3rd-I was thirsty, but they couldn't give me anything.

Thursday March 4th-made me walk a little. Oh boy. did that hurt! I have 15-20 staples in me. and yeanh

Friday March 5th-My friend from Chicago (that I met online and never Met before) visited me. It was so nice of her to come! I could have ice chips. More walking.

Saturday March 6th-My friend was over again. and my grandparents. and aunt. and little brother!!  and another family friend came. walked alot that day. finally ice chips today!! Yum. clear liquids too.

Sunday March 7th- I COULD EAT FINALLY! walked around ALOT. took me off the pain button, now I have oral pain meds.

Monday March 8th-They took some staples out and stuffed me with gauze. Now that hurt alot too! The doctor wasn't very nice about the staples part.

Tuesday March 9th-I was supposed to go home, but I didn't. My site kept leaking alot. The JP drain site.

Wednesday March 10th- They took out the JP drain!! So the site stoped leaking.

Thursday March 11th-I finally got to go home! 

I still have my bag hooked up to my vecostimy. and a bunch of staples in my stomach. it hurts to walk around, but not as bad as I thought it would be. Gotta take my pain meds every 3 to 4 hours, or i'm in a lot of pain! I get my staples taken out on monday and then I get steri strips. I hope I get my bag taken out too.

Sorry that was so long, but that's the condenced version!!

<3333
Brianna

[monrein]

One more step done Brianna!   Glad you're finally home.

[galvo]

Brianna! That was a fun week, wasn't it? You're a real trooper! Every day, some improvement. Good on ya! Keep battling.

[Chris]

Ohhhh that go lightly stuff is horrible and completely uderstand that part. However, they used an enema for my transplant and never had one of those before. Not a fun part either, especially when a shower prep is given first    then the enema for surgery prep. Should be the other way around I would think.
 
Glad you made it home and are ok. just take baby steps to recover.

[Romona]

Brianna, I hope your recovery goes well.