New to dialysis

[pianoflute2]

Hi everyone! I'm Annie, or Anna Marie, or piano! Whichever suits you best. I'm on this forum because my little brother, Daniel, is on dialysis and he hates it, and I honestly wish I had found you guys sooner! Daniel is 15, so we're at a children's hospital. He got out of the PICU just under a week ago. At the worst of it he was hooked up to a ventilator, had a chest tube, a feeding tube, a tube emptying his tummy, IVs on both arms, and one in his femoral artery. Daniel has something called Wegener's Granulomatosis, which is an auto immune disorder that attacks the small blood vessels, like the ones in your lungs and kidneys. It came on very suddenly. I'll write out the whole story now, so you guys can get it in order!! Haha
About three weeks to a month ago Daniel was fine, he was playing outside with his brand new roller blades one day, and the next he could barely get out of bed. His symptoms seemed like a normal cold or flu, but what worried my family is the fact he wouldn't get on the computer, or eat. After about a week of not getting better our grandparents took him to the doctor, but he did nothing! He said it was the flu, and he cauterized his nose because it was bleeding. We're all rather upset about that, because if he had done a simple urine test he would have found that Daniel's kidneys were failing. So we go about another five days, and Daniel starts having difficulty breathing, his breaths were fast and shallow. Grandma tried everything to help him to breathe better, but he kept getting worse, so on that Sunday they took him to an instacare center. His blood oxygen level was about 36%, but he wasn't cyanotic at all! My mom had been waiting on the phone to give permission to treat at the instacare, but instead she gets a call from my grandpa saying they're on their way to the emergency room. They get Daniel on oxygen and it goes up to about 70%. They took xrays, and I'm assuming did some other tests, and his lungs were full of fluid, which turned out to not be fluid buildup from kidney failure, but blood. So they helicopter him to the nearest children's hospital, which turns out to be right near where my mom lives.  He was put in the PICU right away, and that is where they found out his kidneys were failing. The doctor said he was at 8% kidney function. For the first few days all they did was stabilizing treatments, getting the blood out of his lungs, oh, and he got a little tear in one lung so they had to put a chest tube in to get the air out of his chest cavity. At this point is where I come in. Once I heard how bad of condition my little brother was in I flew from Florida to Utah to be with him. He was heavily sedated for the first little while, with the breathing tube and everything. He was very sick, and I was scared he was going to die. He and I agree that if grandma and grandpa had waited another day to take him to the doctor he would have died. After a couple days they put a catheter in his chest for dialysis and he was on constant dialysis for a few days, he started looking better, and they took the ventilator, but he was unable to talk for a while, and had lost dexterity in his fingers, he had a hard time writing or typing to us, it really frustrated him. The first thing he asked for when he was conscious enough was some soda, but he was on the feeding tube, which went into his intestines, plus the tube removing stuff from his tummy. They took out the tube in his tummy about a day before his transfer. A little while later they were able to take some of the IVs out, and transfer him from the PICU to a normal childrens unit. He got the chest tube removed shortly. Since then I've been staying with him at the hospital all night and day, during the week. Mom has weekend duty. He's able to talk now, and he's even off oxygen today! His oxygen is at 96% right now! He's gone from constant dialysis to daily dialysis to every other day. And that's about where we are right now.
I could really use some support right now, honestly Daniel is the one taking this the best. He understands what's going on, and that his kidneys may not come back. Luckily he has a whole family ready to donate to him. The only issue is he's O- and we're not sure our blood types. But to the best of my knowing every family member who is physically capable of donating has offered. He's got a huge support system, but sister, and mom, have kind of been put on the back burner. Understandably, of course. But yeah, happy to be here and hopefully I'll learn things to help my brother!!

[iolaire]

Welcome, best wishes for a strong recovery by your brother.  Hopefully he will feel better as the experience of all the life support tubes moves into the past.

[Simon Dog]

As long as a family member qualifies, there is always the option of a paired exchange or donate to the list if there is no direct match.

I suggest he look into home dialysis.  If he is determined, he will be qualified to drive a dialysis machine before he learns to drive a car.   Depending on his personality, he may find that not being tied to a clinic, or clinic hours, provides him with a better life and more self determination.

[pianoflute2]

Thank you for the well wishes iolaire!
As of right now the doctors are hoping his kidneys kick back in, I'm going to be asking the doctor what happens if they don't kick in, but I feel like I'm going to get the 'we'll talk about that if it happens' answer....
I asked him about the home dialysis thing, Simon Dog, and he thinks that would be to stressful for him, but if this becomes a very long term thing I think I'll suggest it again.

[cassandra]

Welcome to the site Annie,

     


Best wishes and love to you and your brother, Cas

[pianoflute2]

So we talked to the doctor this morning and got more of a timeline of what's going on. He said that if Daniel's kidneys don't 'bounce back' in the next month and a half it's very unlikely they ever will. If that's the case we focus on treating his Wegeners to get him as healthy as he can be, which he said will take about six months, and then after that we can talk about transplant options.

[PaulBC]

About three weeks to a month ago Daniel was fine, he was playing outside with his brand new roller blades one day, and the next he could barely get out of bed. His symptoms seemed like a normal cold or flu, but what worried my family is the fact he wouldn't get on the computer, or eat. After about a week of not getting better our grandparents took him to the doctor, but he did nothing!

Yeah, it also came on very suddenly with our daughter, who was then 8 (last October).  Fortunately the doctor ran a urine test and (after a followup blood test) we were at the emergency room at the end of the day with a pediatric nephrologist expecting us. I never imagined something like this could happen, and I expect you and your family feel the same.

I could really use some support right now, honestly Daniel is the one taking this the best. He understands what's going on, and that his kidneys may not come back.

Good for him! My daughter has also been amazing about the whole thing. She's doing well right now, and enjoying a fairly normal life on PD. A transplant is nearly inevitable, but I'm happy with the way things are right now. I do understand how hard it is. I hope he stays strong, and if there is still a chance of getting his kidney function back, keep your hopes up. Did they do a biopsy?

I agree with the comment about home dialysis. I like our hospital's hemodialysis staff, but I am happy not to have to see them much now. I'm sure your brother would have no trouble at all learning PD setup, and he'd feel better taking charge of his care.

[pianoflute2]

PaulBC, what does your daughter have? If it's ok if I ask, of course. Yeah, it was just so sudden, at first I assumed he just had pneumonia, then we found out about the kidney involvement. After that it took about three days to get the diagnosis. Daniel is doing really well, he's being so careful of his restrictions and just wants to do everything he can to get better. The doctor was so surprised at how well he's doing with his fluid restriction. I've talked to him about home dialysis, but the idea scares him. He 'wants the professionals to handle it.'

[Zach]

Welcome to our community!
 

[PaulBC]

PaulBC, what does your daughter have? If it's ok if I ask, of course.

She has C3 glomerulonephritis, but there isn't any real explanation of why she has it. The biopsy showed extensive scarring, and I think the C3 showed up in fluorescence. Based on electron microscopy, it is not dense deposit disease, which is good news, because that almost always recurs in a transplant. There were some genetic tests, and I am not sure they found anything very definitive. Personally, I think it might just be a form of post-strep GN that went out of control, but I'm not a doctor, and that idea might not even make sense. Anyway, her immune system went to town on her kidneys for reasons unknown, and did it very fast. Other than this, she's always been healthy and physically active. She's still a very strong, active kid, but maintaining her health is just a lot more work and stress.

Yeah, it was just so sudden, at first I assumed he just had pneumonia, then we found out about the kidney involvement.

I don't think anyone suspects kidneys unless they have some experience with it. It was certainly the furthest thing from my mind. I remember asking the pediatrician if she might be herniated somewhere, just because that was about the scariest thing that popped into my mind. By comparison, that would have really been easy to fix.

After that it took about three days to get the diagnosis. Daniel is doing really well, he's being so careful of his restrictions and just wants to do everything he can to get better. The doctor was so surprised at how well he's doing with his fluid restriction. I've talked to him about home dialysis, but the idea scares him. He 'wants the professionals to handle it.'

If you're still waiting to see if his kidneys recover, you might want to put off PD anyway. The toughest thing for my daughter was having the PD catheter placed. She made it through every other procedure easily, including the HD catheter, but putting a tube in her belly made her miserable for a week and she lost a lot of weight. But once that's done, you really don't need professionals to carry out PD. The machine is easy to use. You just have to be careful to mask, wash, and not touch the wrong spots. I was scared too, and I understand that. But learning the procedure is also very empowering, because you're not always dependent on "professionals" to take care of you, and you spend a lot less time at the clinic.

Of course, you have to go with what's comfortable, but he should at least learn about all the options. One book I found informative was What You Must Know About Dialysis: Ten Secrets to Surviving and Thriving on Dialysis Paperback by Rich Snyder. It was at our library, and there may be other sources just as good. I will say that PD has worked out for us so far.

[pianoflute2]

I'm sorry, that must have been so scary for you, Paul! But I agree with you that it would probably be good for him to do dialysis at home. But we'll wait and see how long he's going to need dialysis first, I think once this becomes more routine for him he may want to do it himself. And I looked up that book and will see about getting it soon!!

Also, Daniel is going home tomorrow! He'll have to come back three times a week for dialysis, and possibly more for physical therapy, but it will be so much easier to get him to eat and walk around at home.

[Darthvadar]

Hi Ann Marie...  to IHD...

Hope things are getting better for you and your brother...

Visit us often... You'll get lots of support here...

Darth... Moderator....