I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: rsudock on May 18, 2011, 07:18:46 AM
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Hello my IHD family. Neil is in the hospital right now. The last few days his stomach has been, nausea, throwing up, high bp and pulse, dizziness, and black stool. I am thinking maybe his anemia is really bad and he has a bleed somewhere. I am really annoyed with his doc letting his BP get this out of control.
What really broke my heart was when I was driving him I could tell he was upset. He was telling me all the stuff he was missing today and then he started crying saying, "I just don't want to be sick anymore." It just tore me up inside. My brother never cries and carries this burden so much better then me...
I HATE kidney disease!!! The type of PKD we have 1 out of 40,000 people get...2 in one family?!?! What are the chances?!
Please God let him be okay...let me know what to say to comfort my brother and be a good big sister...
xo,
R
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Going to transfer him to the main hospital clinic and admit him. Most likely it is a bleed somewhere in the lower colon. No blood work back yet. They were going to do a NG tube (tube they put in through your nose and down to your stomach) but won't since he has varices in his throat. (With the type of kidney disease we have, we also get portal hypertension in the liver that cause the veins in your throat to bulge causing the varices)
He just seems really sad...doing my best to be supportive. Keep sending him prayers.
xo,
R
ps-I should have gone into nursing. Do they give out honorary degrees somewhere? ;)
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Hope your Brother feels better soon. The only consolation here is he has someone such as yourself who can really understand what he is going through, to talk with. hang in there and my prayers are with you both.
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:bestwishes; I'm so sorry about your brother. I know how he feels when he says, "I'm tired of feeling sick." I feel the same at times and I ask why does it happen to me. He will pull out of this as I pull out of things. It takes a toll out of you and you feel like giving up. When you do feel much better, he'll feel like it was just a mountian to climb to the top. I'm hoping that he will feel better and that his lucky to have a sister like you to support and be with him. I wish I had the same. Keep his spirits up and tell him that he has lots of support here.. :waving;
Rivy
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Thinking of you both!!!!!
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I know they're not really helpful but please accept my *huggles* (for both of you.)
I remember one time when Blokey broke down and cried and it completely tore me up inside knowing that I couldn't wave a magic wand and make everything better, for always.
Thinking of you both.
Oh, and what a fabulous big sister you are.
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I HATE kidney disease!!! The type of PKD we have 1 out of 40,000 people get...2 in one family?!?! What are the chances?!
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I am sorry and I hope he gets better soon.
What are the chances? Unfortunately from what I read, 90% of PKD are autosomal dominant so that each child has a 50% chance of inheriting the disease, making two children in the family having the condition about 25%.
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From your comments I'm guessing that you both have the regressive form of PKD. About 25% of children of a prent with the gene get the regressive form. The dominant form runs more like 50%. Both my husband and his only sister, as well as our daughter have the dominant form of PKD. Our daughter's liver is also compormised with cysts. Our niece and nephews have not been tested, even though their mother is in very desperate need of a kidney. They do not want to know if they, too, have PKD.
I'm sorry for you both. This is a sh*tty disease.
:grouphug;
Aleta
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I HATE kidney disease!!! The type of PKD we have 1 out of 40,000 people get...2 in one family?!?! What are the chances?!
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I am sorry and I hope he gets better soon.
What are the chances? Unfortunately from what I read, 90% of PKD is autosomal dominant so that each child has a 50% chance of inheriting the disease, making two children having the condition about 25%.
Hey Greg thanks for the well wishes. The type of PKD we have is more rare. We have autosomal RECESSIVE polycystic kidney disease. The infantile kind. Actually I was suppose to go for genetic testing today to figure out where on chromosome 6 the abnormality is located.
THANKS everyone for your support. I just love when the doc rushes in and says "He is very unstable right now." I mean obviously I know this but don't say it in front of him!
xo,
R
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Hope your brother gets sorted quickly and feels better. You are there for him and understand what he is going through, every one on this site is there for him. Tell him to stay positive (which can be hard to do when you feel like shi*) He will come through this. Thinking of you both. And yes it is a shit** disease. :grouphug;
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Giving him O+ blood right now....
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my parayers for you brother and family at such a hard time. :banghead;
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:grouphug; :grouphug; :grouphug;
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:grouphug;
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Praying for you both. He is very lucky to have you to be by his side. :grouphug;
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What really broke my heart was when I was driving him I could tell he was upset. He was telling me all the stuff he was missing today and then he started crying saying, "I just don't want to be sick anymore." It just tore me up inside. My brother never cries and carries this burden so much better then me...
Please God let him be okay...let me know what to say to comfort my brother and be a good big sister...
Sometimes there's nothing to say. Just hug him, hold him and be there for him. Let him know heś not alone. I hope your brother puts this behind him soon and :cuddle; for you.
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I am so sorry to hear this. You are both in my thoughts and prayers.
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I'm hoping for the best for your brother.
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Oh, Ru, I am so sorry for your brother. I really do not have the words to give comfort, but I do have prayers! GOD is still on His Throne, and looking down on you and your brother. He is all loving, and all caring. He loves you both unconditionally!
Got a Prayer chain going for your brother and you. Know that IHD is here for you. So sorry you guy's are going through all of this awful disease. I just don't know what to say, just be there for him and let him know you LOVE him!
lmunchkin :flower; and :pray; for you both!!!!
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Best wishes to you both!
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:cuddle; Sending HUGS - I hope he's improving!
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I send you both my best wishes,
Kristina. :grouphug;
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I'm praying for the best..
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How is our little Man today? Still praying for you both!
lmunchkin
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Hi friends THANK YOU for your love and support...you folks out of anybody really do understand what we are going through!
Well they did an upper endoscopy (tube down your throat) and they didn't find anything. The varcies in his throat were not bleeding (thank goodness). They have given him a little over 4 units of blood. Of course now he is spiking a temp but they do not know if it is b/c of the blood or now he may have an infection. I am betting that it is the blood though. They drew blood culture to see if anything is in his blood. The doc says now that he thinks the bleed has stopped b/c blood is a natural laxative so if you are bleeding you either throw up or have bloody stools. Since he is having none of that it must be okay though. His hematacrit is slowly coming up but he still looks a little pale to me. Right now all he is complaining of is his stomach hurting a bit. I am going to try and get him to eat a little something.
On a sidenote when I was at work for 2 hours today I asked my mom to talk to the neph about plasmapheresis since Neil's PRA is so high. The doc says "Well they only really do that in Canada and it doesn't really work that well." Just really irratates me...whether that is true or not does he realize what he is saying? Basically you have no hope so just accept dialysis...what a jerk. I guess I am going to have to advocate for my brother myself.
Again thanks friends for all your love!! Keep him in your thoughts he tends to get a little morose in the hospital!!
xo,
R
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well did a CT scan and they said a bile duct to the liver is inflammed. Neil seemed relieved that they found something. Giving him more antibiotics and dialysis treatment. His fevers seemed to have stopped for 9 hours now and he is getting around more. I think he gets annoyed with me making him walk around, but oh well! :) Hematacrit and other blood work going in the right direction! Yeah!! Thank you Lord!!
xo,
R
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:2thumbsup; Finally some good news!
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Fantastic! About time a little something goes yalls way. Stay on him Ru, cause you of all people know how it effects the whole system! Please, keep us updated on him.
lmunchkin :flower;
P.S. I bet you were frustrated when doc said that. It makes me mad to hear it cause they should be more mindful of others. :Kit n Stik;
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R- I am so sorry!
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I hope things are getting better.
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Hey folks Neil is out of the hospital now. One day out and he is doing well!! The doctor said that his liver is pretty bad and he needs to be followed by a liver doc. The portal hypertension is causing the stenosis (narrowing) of the bile ducts. The fevers could just be a side affect from the liver starting to go bad. We know this is part of the disease but with his high PRA it makes me nervous he is going to find himself in a serious situation and my sister won't be a match....so now I have to find out this plasmaphersis stuff for him. I think he is just scared to think about getting another transplant....
Oh well the tech infiltrated me tonight (not in a good way!) have to go ice my arm now!
xo,
R
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I am glad he is out of the hospital. Please keep us posted. Sorry about the infiltration.
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R- here is a link to jump start your research. I am sure there are programs closer to you for Plasmapheresis.
http://www.hopkinsmedicine.org/transplant/Programs/InKTP/crossmatch.html
http://discoverysedge.mayo.edu/abo_posxmatch/index.cfm
You will be an HLA expert shortly! You can ask for HLA profiles from your coordinators. Your sister can request hers when she has her blood work done.
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Just an update on the baby bro...Thursday he graduates from Broadcasting school! yeah!! He has an appointment with the liver doc tomorrow, they are going to do a jugular biopsy. They cut the artery in your neck then send something like a cath down the artery to the liver and cut a chunk of the liver out to biopsy. They do this instead of the biopsy through the stomach in case there is any bleeding it goes right back into the vascular system.
Neil and I were talking about what an amazing year it has been. I am just so happy I made the decision to bring him with me when I moved for the new teaching job. He seems so much more happier then living with my mother. He has friends and is looking for jobs. He feels so much more productive and proud. I would endure dialysis all over again if I got the same result. Everything does happen for a reason. Once he gets a job with private insurance we will move forward with plasmaphersis. Let's be honest they probably aren't jumping on Medicaid patients to get this done and help them live a healthy and happy life are they? Also now with seeing me go through a second transplant he is more confident he can do it again himself. No wonder I am the big sister...I have to lead the way for everything!!!! :2thumbsup;
Love to you all!
R
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He is so lucky to have you there by his side. What a wonderful sister you are! :cuddle;
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Yes, he is lucky.
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Rachel, that is just so fabulous for you and your brother. What a star you are, and many congratulations to your brother on his graduation. With his challenges, he should be that much more proud that he made it through. :flower;
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He will pull threw just fine!!!! :grouphug; :grouphug; :grouphug;
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RU, you may have very well saved his life by taking him in! Yea, I'd say that the sacrificies you made on Neils behalf, are now your rewards! What an AWESOME Big Sister you have been! God Bless you for all you do! You are amazing!!!!
lmunchkin :flower;
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Neil and I were talking today and I offered to do home dialysis training. He didn't seem very interested as he likes his nocternal 3 x a week, but he will think about it. I just want him to be the healthiest he can be...of course happy too! The only good thing about home D is that he could travel easier...well that's what he said anyhow.
He goes for his liver biopsy end of the month....
Xo,
R
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What a wonderful offer re helping with NxStage training. I'll be interested to see if he decides to do that.
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Correction he goes in for the liver biopsy on wednesday! I have to meet the surgeon and neph later in the afternoon so, hopefully everyone gets the attention they need! Thankfully Aaron has the day off of school so, he will help balance Neil and I's appts.
Love to you all!
R
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What are they expecting to find in the liver biopsy, if anything?
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Hey MM,
Before they will give Neil a kidney transplant they will check to see if he needs a liver as well. If they find he needs both he will be listed that way on UNOS, but I am unsure what that means for a living donor who is only willing to give a kidney...
With our kidney disease, the portal hypertension ends up scarring the liver and the person usually needs a new liver eventually...hopefully this will not be Neil and I's immediate future...
Xo,
R
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OMG Neil's liver biopsy, which is usually 45 min procedure, took 4 hours!!! By about 2 1/2 hours into it I started to get really agitated. Finally a nurse came out and said that they preped the right side of the neck vein and the vein was clotted off. so then they had to prep the other side. Then he keep oozing from the cuts in his neck.
I wasn't very happy about this day. His BP was super high, they had to stick him 4 times to get an IV, and the doctor NEVER came out to talk to me!
So today Neil gets this call from the liver institue trying to set up an appointment for an education class on getting a liver transplant! WTF! He hasn't even talked to the doctor yet about the results!! People are really dropping the ball!
So Neil called the doctor's nurse and complained and said, "Is it really that bad. I don't feel that sick. I'm not yellow or itchy." So they gave him appointment to get the results next Wednesday...
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oh my goodness :( It's harder dealing with the not knowing, or not trusting than it is an actual illness. If you KNEW what to do you can take steps with confidece toward healing. Im so sorry your going through ALL this crap and your brother too. Im sure glad you have each other to lean on but geesh! I wish you both well :cuddle;