Baby bro is in the hospital...

[rsudock]

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

[rsudock]

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?

[Sluff]

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.

[Rivy]

  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..

Rivy

[WishIKnew]

Thinking of you both!!!!!

[Poppylicious]

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.

[greg10]

...
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?!
..

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%.

[willowtreewren]

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.

 

Aleta

[rsudock]

...
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?!
..

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

[billybags]

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. 

[rsudock]

Giving him O+ blood right now....

[harley08]

my parayers for you brother and family at such a hard time.

[jbeany]

 

[lou]

 

[Kitty Cat]

Praying for you both. He is very lucky to have you to be by his side. 

[aharris2]

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  for you.

[YLGuy]

I am so sorry to hear this.  You are both in my thoughts and prayers.

[HouseOfDialysis]

I'm hoping for the best for your brother.

[lmunchkin]

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      and  for you both!!!!

[galvo]

Best wishes to you both!

[okarol]

  Sending HUGS - I hope he's improving!

[kristina]

I send you both my best wishes,

Kristina. 

[texasstyle]

I'm praying for the best..

[lmunchkin]

How is our little Man today?  Still praying for you both!

lmunchkin

[rsudock]

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