Worried about the baby brother....

[rsudock]

2 weeks ago Neil and I saw infectious disease & she agreed the liver needed to come out...today Neil & I went to see the surgeon who has cut into us for years...and here are the highlights of what he said that stick out in my mind....

"You are tricky/tough to do surgery on."

"Yes we will take out the gallbladder but from the image studies the lower lobe of your liver looks like there is pools of bile. Now it may be bile, cyst, or infection. We will take a sample of the pools in the liver & if its infected we will removed the lower lobe."

So at that point I say, "Oh my gawd is that really good to do with our type of kidney disease? Can you just drain the pools? Will his liver regenerate?"

THe doc, "umm since his liver has so much scarring it probably won't regenerate, but uuummmmmmmmmmmmm yeah people can live without it." (Didn't sound reassuring to me, so I have a weird look on my face. Neil looks like he's in shock)

The doc, "But don't worry let's take ANOTHER ct scan & check to see if this pool in the liver is any bigger & how bad the bile ducts are to be as prepared as we can when we do surgery."

So in my mind even though any surgery is a risk, he could potentially have part of his freaking liver removed & the gallbladder, or only the gall bladder. Worse case scenario the liver is really infected, he gets septic and .......   you get my point don't ya?? We are looking down a gun barrel as far as I can tell.....no surgery date yet....

And he looks jaundice too...


 


xo,
R

[MooseMom]

Oh my God, Rachel, this is really worrying.  I hate hate hate this.

Is a liver and/or kidney transplant possible? 

You must both be in shock.  I know I am...

[jeannea]

Wow. That sounds incredibly awful. I'm so sorry. All you can do is keep on keeping on. Poor guy.

[cariad]

How scary. I am devastated for you both, Rachel. My thoughts are with you and your brave little brother.

I hope the doctors find that the liver can be left intact. And I really want the universe to give Neil a break already.

[rsudock]

Neil had his gallbladder removed (sorry if I have typed this another place....I feel like I have two threads going about the baby brother) anyway....they found a staph infection in the liver. He has been taking antibiotics, but it is just a band aid on the problem. THe liver is getting so bad Neil and I talked about him getting listed for both a kidney and a liver...hopefully this summer we will do the lowering the PRA plasmaphersis and have the transplant team evaluate him for both new organs....the liver is just putting to much pressure causing him to bleed so he either needs to stay on antibiotics and get blood every few months (ie never getting a kidney) or go through 2 organ transplant accompanied by plasmaphersis...

we are tough...thank you to everyone that follows our story....

xoxo,
R

[Chris]

He is definitely a fighter with all that has happened. I hope your brother can get on the list and get a dual transplant.

[jeannea]

Poor guy. I hope he can get listed for a double transplant. That's a lot of suffering he's going through.

[boswife]

oh precious heart.  God bless you and bring you both health and strength.  You are one tuff cookie i tell ya.  You are his blessed angel, and im so glad you have each other.  I thank you for keeping in touch, and wish you so much good to come your way.  with much love... jill

[lmunchkin]

You two are lucky to have each other!  God Bless you Both! It is like you are twins. Both going through alot over time.  How is your transplant doing, by the way?

lmunchkin

[MooseMom]

Oh gosh, there is just something wrong with the cosmos; it's not fair that your brother should be having to deal with all of this.  Have y'all spoken with his docs about being listed for a liver, also?

[okarol]

Dear Rachel, I cannot believe this. It seems like a story that just keeps going with no clear resolution in sight. How are Neil's spirits? Poor guy, he really has been through way too much. Do you feel confident about the care he is getting? I wish I could help. Please give him my best. Sending you both some LOVE. 

[rsudock]

HI dear friends I know many of you follow me on  Facebook but for my pals who don't just wanted to touch base...Neil has jumped through all the hoops to be listed for a liver. So now he is listed for kidney and liver...
DID YOU KNOW?! When you are dual listed they go by your MELD (spelling?) score for the liver to how soon you will be transplanted...the score is anywhere from 1 to 40...Neil is right at a 20. He was at 22 but apparently he's liver looked "better" at the end of the evaluation process so the score was lowered...

Anyway it seems like within the year he will be transplanted and his PRA score is "no big deal" I am so confused when he was listed for a kidney he would have been waiting forever and the PRA was an issue, now since the liver is involved it's like the PRA is out the window and he isnt going to have to endure Dialysis forever...someone explain this to me??

Neily and I went to NYC for New Year's Eve to kinda celebrate this last year before all this major surgery stuff...it was such a great trip...I love this kid what I would do without him in unimaginable...my best friend, probably the only person who will be my soul mate through life understanding this disease...

love you all

xo,
R

[MooseMom]

Oh, my sweet girl, I can't begin to explain this PRA stuff, but I don't care because all that matters is that things are looking up and a D-free life is in sight.  I am thrilled beyond words!  Please tell Neil that I think of him often.   

[boswife]

     oh boy,, it's so good to hear from you and so glad to hear this news.  I sure hope it all works out and sending prayers and lots and lots of love.  Thanks for writing    I've missed you 

[okarol]

I hope Neil gets a good match - best wishes and love to you both!   

[rsudock]

Update: Sorry to those who talk to me a lot a few years ago....i know I went MIA but I'm here.
update on my bro: #1 on the transplant list for liver and kidney at  our hospital. Has been getting calls but always the runner up, since the organ allocation system makes the hospital have to share organs with surrounding regions.

He's been doing NX STAGE at home and is doing better. His girlfriend has been his care partner. Still a few hospitalization here or there due to liver infection or BP being to low and him passing out at work.

Still in a holding pattern....be wonderful for both of us to have working organs at the same time. He setup me as his POA (power of attorney) if he goes into surgery and can't make decisions.  Our mom thought it should be her...that was a fun argument errr....conversation.

October 2014 was 6 years he has been on dialysis since he was 23.

[okarol]

  Sending hugs. This is so hard, but good to hear home hemo is working for him.

[rsudock]

So my brother has been waiting for a liver and kidney for years now. The doctors have been telling us, "Oh you don't have to worry about antibodies when you get a liver too. The liver protects the kidney more, blah, blah blah." So that last year and half I have watch my brother get 9 calls from the waiting list and he never gets picked. We were under the impression someone else was a sicker candidate who received the organs. Well we find out tonight that the antibodies are an issue!!!  So I have watched my brother get sicker and sicker with this liver and kidney problems, and NOW we know we will probably have to do plasmaphersis. Is he strong/healthy enough for plasmaphersis, can they just transplant the liver and keep him on dialysis, would he even survive any surgery with having constant infections for the last 2 years.....I just so scared for him.

I took off work tomorrow to stay all day in the hospital and get ALL of his options and see if he needs to transfer to a hospital with a living donor liver program.

[jeannea]

It sounds confusing. I think you're doing the right thing. Be persistent and get some answers.

[kristina]

Hello rsudock,
I do hope everything sorts itself out and I wish you and your brother very good luck.
It is very sweet of you to assist your brother in his hour of need
and I do hope that everything goes well for both of you.
Best wishes form Kristina.

[MooseMom]

Oh gosh, this must be something of a shock for the two of you.  Please let us know what you find out, OK? 

[cassandra]

                                  


And lots of strength, and love, and luck to you and your brother, Cas

[noahvale]

*

[okarol]

  Best wishes for Neil - sending you love too.