I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: rsudock on May 29, 2012, 11:08:01 AM
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Many of you know that Neil (brother) has been sick on and off since Janurary...even having a hospital stay or two...
Seems like anytime he is off antibiotics for a couple a days he starts spiking fevers and is sick....I just don't know what to do with him. He probably needs is gall bladder out but I don't think that would cause fevers...does he need more dialysis? (he does thrice weekly incenter NOCTERNAL) Maybe he just can't get rid of this infection because his lack of kidney function...
I know so may of our good people have passed on from these infections they can't clear...just worried about him...
thank you for listening...
xo,
R
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I guess my question would be do they know where the infection is? They could need to change antibiotics. Or for ex when I had c diff I had to do a long taper of my antibiotics to keep it from coming back. Has he seen an infectious disease specialist? It might be worth it.
I'm sorry things are so tough for him.
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It is possible that his gallbladder is the source of a low grade, chronic infection, I suppose.
Do you know exactly what kind of infection he has? I really don't know what the effect of dialysis is on chronic infection. That's a good question.
I'm really sorry to hear this, and I'm worried for Neil, too. Please keep us updated on his condition, OK?
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It's so hard when our loved ones are not well. Im sorry for the both of you as i know the worries :( and how that initself takes it's toll. Im sorry sweetheart, and wishing him well, and keeping him in my prayers. Bless your hearts,, :cuddle;
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When a dialysis patient has a fever of unknown origin, it's definitely time to see the infectious disease specialist. If his albumin (protein) is low, that will make it difficult to fight an infection, but the first step is to find out what's causing the infection to begin with.
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Sorry to hear about your brother. My advice has already been mentioned here, but would add to get a second opinion if possible.
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:cuddle; I hope he gets an answer to this.
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Keep asking questions. Keep asking for second opinions. Squeaky wheels get the grease.
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Oh, I feel so bad for Neil. He has been the one to get me through this horrible disease. I hope he gets better soon and gets it figured out. Cody had his gallbladder out a few years ago but I don't know if he had a fever from it and he doesn't have kidney disease. I will be thinking of you and Neil.
Oh, this is me, Jeanne, Kyle and Cody Pittman's Mom. :)
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Sorry, don't know how I missed this post.
Is he seeing an IDS? I know J's Primary doctor refered him to an Inf. Disease Specialist years ago. She is now our Primary Doctor. She is excellent!
Praying for Neil, Rachel. Hope he gets to the bottom of this.
God Bless,
lmunchkin
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Hi dear friends,
I have been getting on him about seeing a Infectious Disease doc...when he was in the hospital like a month and half ago...he did see one but they couldn't come up with anything. It is so darn frustrating...It is really weird too because when he gets off his "schedule" he starts feeling sick...by schedule I mean if he doesn't lay on the couch and recuperate the ENTIRE weekend he can't get out of bed Monday...just to tired....like in Chicago all the walking around he did and not having his antibiotics (temporarily ran out for 4 days) he started feeling bad again...they have done everything to him swallowing a camera pill, MRIs, IV and oral antibiotics, hyda scan for the gallbladder, colonoscopy, endoscopy...all within the last 6 months!!! They still can't figure it out...the MRI showed that it wasn't his fake hip either....
The doctor told him to get another bone marrow aspiration, where they take that huge needle and drill it into your hip....I keep getting on him about doing it but he is really resistant....he has had one done already and they are not pleasent at all! Good Lord why don't they put people out for that procedure?
Anyway thanks for your love and support....I will let ya know what is going on with Neil the Deal! :)
xoxo,
R
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rsudock, i agree with you that the medical community should be a little more open to doing painful procedures like bone marrow aspirations under general anesthesia. Of course it's riskier, but they should at least offer the patient the option... It's bad enough to be chronically ill without having to be tortured as well!
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:grouphug;
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Thursday Neil is getting some Platlets ionized and then the doc puts the platlets back into him...the next day they do a scan to see if the ionized platlets are heading to the infection...please Lord let them find something they can fix and make him feel better. :bow; Constantly having fevers is no way to live. :(
xo,
R
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Wow that's amazing - i hope it gives him some answers! :cuddle;
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This little guy has been through enough! Yes, I agree, Lord please find this problem & get it fixed. Please tell Neil that we are still holding him up and an answer should come soon, Rachael. What a sis you have been. He is very lucky my dear, that you have his Back!!!!
Praying :pray; for you & him,
lmunchkin :kickstart;
P.S. You take care of yourself too, Rachael. You have had a lot to go through and we want you to remain in good health!
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Thursday Neil is getting some Platlets ionized and then the doc puts the platlets back into him...the next day they do a scan to see if the ionized platlets are heading to the infection...please Lord let them find something they can fix and make him feel better. :bow; Constantly having fevers is no way to live. :(
xo,
R
What an interesting procedure! I have never heard of this, and I really hope they find the source of the infection and/or the cause of the fevers. What a strange mystery. Please be sure to come and post about what the docs have discovered. In the meantime, give Neil our love.
Life can be so unfair. I wish God would have some mercy.
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well the ionized white blood cells, platlets, whatever were scanned after being injected into him....and guess what?? They didn't find any source of infection.... :stressed; I don't get it what is happening to my brother....he is wasting away.... :'(
xo,
R
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Oh Lord, how scary and frustrating! I just don't understand it! Do the docs have even a "gut feeling"?
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I called the liver docs and started giving them the plea about Neil, "He's wasting away, no quality of life, fevers, pain on the right side...he's had every test known to man...what else does he need gall bladder removed, a TIPPS procedure for his liver??? Next Tuesday at 8am he is seeing infectious disease...again...fingers are still crossed.....
xo,
R
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This has been over a month. You both must be so frustrated. Keep shouting until someone hears you and helps him. I'm so sorry he's not feeling better.
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rsudock, Hope they are able to help your brother, will keep him in my prayers.
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:pray; :pray; :pray; and :grouphug; to you both!
lmunchkin
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Thank you my dear friends...
I told Neil the other day, "Don't feel like you have to torture yourself and keep working. I will take care of things." He seemed visibly relaxed...
xo,
R
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oh Rachel, I wish I could be of more help to you and Neil. It is just not fair that he has to suffer like this; it makes me so mad. He seems like such a great guy, and he must be so scared and frustrated. But he is so lucky to have you as a sister, and if there is anything at all we can do to help, please let us know. I hope he can get sorted soon. What are the docs planning next?
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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... :(
:pray;
xo,
R
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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...
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Wow. That sounds incredibly awful. I'm so sorry. All you can do is keep on keeping on. Poor guy.
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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.
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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
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He is definitely a fighter with all that has happened. I hope your brother can get on the list and get a dual transplant.
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Poor guy. I hope he can get listed for a double transplant. That's a lot of suffering he's going through.
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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
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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 :kickstart;
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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?
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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. :-* :cuddle; :-* :cuddle;
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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... :urcrazy;
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... :cuddle;
love you all
xo,
R
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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. :cuddle;
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:grouphug; :grouphug; :grouphug; :grouphug; 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 ;D I've missed you :cuddle;
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I hope Neil gets a good match - best wishes and love to you both! :-* :cuddle;
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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.
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:cuddle; :cuddle; :cuddle; Sending hugs. This is so hard, but good to hear home hemo is working for him.
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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!!! :stressed; 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.
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It sounds confusing. I think you're doing the right thing. Be persistent and get some answers.
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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.
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Oh gosh, this must be something of a shock for the two of you. Please let us know what you find out, OK? :cuddle;
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:grouphug; :grouphug; :grouphug;
And lots of strength, and love, and luck to you and your brother, Cas
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*
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:grouphug; :grouphug; :grouphug; Best wishes for Neil - sending you love too. :cuddle;