How bad will he feel

[Yvonne]

John is 74 and was diagnosed with renal failure back in January 2007, after lots of test and being very ill, they found he had bladder cancer and in June 2007 they operated and removed his bladder, one kidney and his prostrate. Over the following years he has been in and out of hospital so many times I've now lost count. He has regular blood tests (every 3 months) and at the last count his GFR was 10 and his creatinine was 410.
My question is how bad does John have to be before they will start dialysis?  He is out of breath the least thing he does, just walk across the room. He has no energy and very bad tempered. Although he has medication he takes every day for indigestion, at the end of the day he is in so much pain with it he keeps thinking he is having a heart attack.
Is indigestion part of kidney trouble please.

[Jean]

Gosh, Yvonne, with a GFR of 10 and him feeling so bad, it is time to start D. Poor guy, he has had so darned much go wrong. Hope things get better for you and soon.

[Hanify]

Seems to me he should be starting now too.

[Ken Shelmerdine]

Yes he should at least be looking at a PD catheter insertion or Tessio lines to get him prepped for D. The usual trigeer is 500 and over creatinine clearance.

[jbeany]

My doc always said there were only guidelines, no set lab values.  It should depend on how the patient felt, not some lab test.  If your hubby feels that bad, it's time to tell the docs to get him started.  The longer he waits, the worse the first month of adjusting is going to be.

[boswife]

All sighns point to getting started.. Get a fistula started (or which ever way your choising) and get that man to feeling better.  My hubby's GFR was 17 when he started so that's not a big factor im guessing, so i'd push this thing and get it going.  AND since the "accesses" for dialysis take some time to mature i'd really get going if ya can.  All the best to you.  Hope ya get some answers that will help..

[monrein]

I would have started already for sure.  It's a very individual thing but the body can suffer damage if one waits too long.  I felt perfectly wretched at 16 GFR and would have chosen death if dialysis weren't an option.  I told my doc I was ready and started D a week or so later.

[dwcrawford]

With a condition this serious, at his age and with other problems that may or maynot be realted, would this be a good time for a consultation amongh  all this doctors?  Though I had only AFIB and diabetics (controled) my neph consulated with the endochronologist (primary doctor) and the cardiologist....  At 74 or 68 who knows what the situation might be.

[Brianna!]

Before I started dialysis, I had blood tests every other week! Why does he only have them every three months? That seems weird to me. I think he needs to start soon, if he feels bad. I didn't feel bad when I started dialysis, but my creatine was really high. I don't know what my GFR was though.

[texasstyle]

When Mike first saw the Nep his GFR was around 25%. They were going to try & control his high BP to hopefully prevent any further damage.I think he was already too fast on the downhill. He was so very ill by this point. The doctor wanted to get a fistula  put in soon because it takes a couple/few months to heal before they can use it. Shortly after this appt. when he was hospitalized with CHF heart failure they put a temporary line in his chest (they started him on dialysis in the hosp.) and did the fistula surgery before he came home. Now I don't know a whole lot about ESRF & dialysis yet as I am learning along the way, but we were always told that dialysis starts when you're GFR is 15% or lower. I'm sure the GFR can be higher when some people start as everyone is completely different but in my opinion, A GFR of 10 is dialysis time. That's like only 10% of a functioning kidney which is basically nothing. As the kidneys help regulate fluid I wonder if he is out of breath partly because of the fluid build up around the heart. When that happens it is so hard for the heart to pump. I would imagine being sick from all the toxins takes an incredible toll on the body. Mike had the every 3 month Neph blood testing at first and took a nose dive in between. That is kinda a long time to wait in between each test especially if he's so ill. I guess it's thought by a Neph to wait as long as possible before starting a patient on dialysis an not to rush things if it's not "absolutely " needed yet, but sounds to me like it would do him good. He has other complications so it's so hard to say from a "regular" persons  judgment. Gosh Yvonne, I feel for you both. Just wanted to share our experience with finally starting. He also used to get really bad indigestion even after a couple years of dialysis. He finally got on Previecid (?) and it's helped a lot. We assumed it was from the kidney disease.

[Yvonne]

Hi Thanks for your anwsers.  John had his fistular in over a year now so that is all ready to go.
Only one person has refered to the related indigestion!!!!!!!!!!!!!!!!
I wonder if it's his age why he is on 3 monthly check ups.

[Stoday]

I'm near to starting. I get breathless and I get indigestion unless I only eat a very little. Beer and fizzy drinks always provoke indigestion. Once a week or so I get a bad day, feel sick and just write the day off and stay in bed. I don't throw up though.

[Yvonne]

Thanks Stoday  John's the same about once a week or so.  But he is not a beer drinker, he likes his 2 glasses of red wine a day and maybe a whiskey and lemonade in the Evening. His pain is so bad he thinks he is about to have a heart attack.

[Jean]

I hesitate to mention this, as I could be way off base. In Nov of 2007 I had a heart attack. The only symptom I had was heartburn, well, until it got so bad I could not breathe, but that was hours and hours of heartburn. There was nothing wrong with my heart, but I had a blood clot traveling to it and they did an angioplasty just in the nick of time.

[Yvonne]

We do not think it is to do with his heart as after 2 days he feels fine again. Until the next time.  I have told him not to eat too fast and not to have his afternoon sleep until his dinner has gone down, but he takes no notice of me.

[tito]

Hi Yvonne,

My internist knew that I had kidney problems since my creatine hovered around 3.0 after heart surgery I had 10 years ago. He really didn't say anything much to me except in his results letter he would write "kidney function stable"". Last year I started to have various complaints which, if the internist had connected the dots, were kidney related.

I had anemia (he gave me 1 pint of blood via transfusion and some over-the-counter iron pills). My hematocrit was in the low 20's! I had severe nosebleeds (he said it was dry air), itchiness, restless leg, ankle swelling (he said it was my BP drug) - but crucially, I had GI bleeding.

He ordered a colonoscopy (I ordered my own endoscopy since I had had esophogeal erosion). Sure enough, I was bleeding from the esophagus. My GI doctor put me on Nexium, the internist took me off when my creatinine started to go up.

I ended up with 3 weeks of intensive care hospitalization to get the bleeding ulcer under control. It IS one of the symptoms of kidney disease.

Demand that you want your husband on an proton pump inhibitor (I take Protonix). I haven't had any problems since going on them.

I'm looking for another internist - this one got "Best of Boston"once, believe it or not!

[pdpatty]

If he were in US ,he would have already been on dialysis. I didn't have that high creatinin level when my doc said it was time. All I had to mention I was starting to get sick and feel like throwing up.

But I see you are in UK,things may be  alot different there.

[Yvonne]

John feels sick when he gets this bad indigestion, but has not been sick, he had it again yesterday.  His next renal check up is in March, I just hope they know what they are doing.

[Poppylicious]

I'm surprised that John only has a renal related check up and blood tests once every three months ... that seems a tad ridiculous to me.  Could you get in contact with his nephrologist and/or GP and ask that he be seen more regularly, or at least be seen 'as soon as' because you're worried about him?  At the very least take him to the GP about the indigestion ... there may be medication he can take for it.

Blokey suffered from indigestion very early on and has been on medication for it since long before he went on dialysis (in fact I think it may have been an indigestion tablet he was on which contributed to the more rapid demise of his kidneys than was expected as he had an allergic reaction to it, but I might be getting that mixed up with another tablet - there's been so many ...)

*hugs*

[Sunny]

I am pre-dialysis and I have indigestion problems. My doctors have told me to eat smaller meals throughout the day and I am careful about what I eat. It helps, but during these Holidays my diet has gotten screwed up with all the events going on and I'm back to having indigestion with vomiting. By the way, four of my doctor's here in the U.S. tell me there is no need to start dialysis till I am 8 - 10 GFR functioning. Their position is that if I can be treated appropriately with the kidney function I have now (14% GFR), then I am better off because dialysis creates a whole other set of health issues. Good luck.

[Yvonne]

Yes Sunny, John's Renal Dr. said the same thing, keeping off dialysis as long as they can as it will bring a whole new lot of issues. I was just asking I wonder if it will be another emergency trip to the hospital when he will need it. As I've said before it's like living on a knife edge.
John takes two lots of medication in the morning for his indigestion but on bad days he takes extra.