dialysis twice in 24 Days Update

[amycdaa]

Hi all,
 I figured that this website has the most honest and accurate advice and information at least in my opinion. So here goes it all started in January when i had my yearly appointment with the transplant center. I have been on the list for four years with an average of a seven year wait. Before I get asked the same old question no there is no one I have that is a good canadite for donation. I have been on status seven for over a year due to a very bad car accident but have continued my transplant appointments. This year however is different because my gfr came back at a 26. My neph then had me take 11 days off and on the last day do the 24 hour urinre collection. Everyone was sure that after 4 and a half years I would be magically healed off dialysis and off the transplant list. Well surprise surprise I have 9% kidney function. My neph said that he would not take me off dialysis but the transplant team want to test it again. This time it is 15 day stretch. Has anyone ever had to do this. I am watching my fluids and diet like a hawk however, I fell all the symptoms of esrd. Any been there done that input would be great. At this point I feel very alone in this particular time. Thanks for any input.

[obsidianom]

I dont understand why anyone thought your kidneys would magically come back to normal.
What caused your original kidney disease ?    If your GFR is at 9 , you are at full end stage renal disease and if you have symptoms require dialysis .
I dont understand all this back and forth .

[amycdaa]

I too am really disappointed by the transplant team. I have always been very carefull with my fluid and diet as a result my labs are always within acceptable numbers. I personally believe that they are trying to get people off the list because there are so many. In my part of Texas average wait is 7 years, I just really find it frustrating to have the question as to wether I really need dialysis. Obvious;y at 9% I do. It is almost like why try to follow all the dietry and fluid guidelines. Of course my labs are good I take them to heart each month and when something comes back high I change what habit may have caused it. Believe it or not I had the social worker tell me eat all the wrong things so my labs will not be good. It is just crazy.

[amycdaa]

reason for kidney failure was rapidly progressive glomerulonephritis  developed when I had a severe case of strep throat 5 years ago.

[obsidianom]

What is your current creatinine and BUN  and Hemoglobin and red cell count?    What about phosphorus and potassium?

[amycdaa]

creatinine 2.6 potassium and phosphorus within normal limits however had not had those kinds of labs ran in a month  hemoglobin a month ago was 11. I still am able to urinate a little but have nausea, poor appetite, terrible insomnia and am itchy all the time. then the usual exhaustion and foggy brain.

[obsidianom]

What was BUN?  Also how old are you and what is your height and weight? I assume you are a female?

[Rerun]

Do you have your Nephrologist listed on you life insurance policy or something?  Geez I can't believe this.

   

[amycdaa]

Ha ha Rerun not that I know of! I can't remember my bun I sorta went numb after finding out my kidney function and then being told that transplant wanted another trial period. Just to check it because of my good labs back in August my 24 hour urine came back at 9% then. Four and a half years ago when I started my function was 14%. I am female, 38 no other health problems. Thanks for the replies guys.

[obsidianom]

The reason I asked the questions on size etc.and BUN is that a creatinine of 2.6 isnt that terrible yet for a male with a lot of muscle , but in a small female with minimal muscle it is a different story.  The BUn would be another good indicator of uremia. It would help clarify the situation .
Bottom line is that if you feel sick from uremia , it is more important than the numbers.  These days that is what most nephrologists use as the final determination on dialysis. You sound like you are quite uncomfortable from uremia so dialysis makes sense.

[amycdaa]

I have lab work to get done tomorrow so hopefully i can get some more information. Thanks for the help guys.

[jeannea]

This is very odd. A 24 hr urine is not that odd but the long break is. Couldn't you just do it on your long weekend? Sun if you do dialysis M, W, F, or Mon otherwise. It seems like a long break could be dangerous. I would ask to talk to a doctor at transplant before doing the test. Ask why they need the test again. Ask about the risks of taking a break. Tell them about all your symptoms.

[RichardMEL]

Bizarre to my way of thinking.

My question is - what was your GFR/Creat before it was 26 and you got the break? I mean say you were tested a few months before do you know what the numbers were like?

I think most of us know that GFR specially can wildly change from test to test (Creat can to, but not so wildly) and I think it is irresponsible to there and then say "OK have a break" and we re-test. It was no surprise to me that after 11 days you were down to 9, and presume back to 15 once you'd been back on hopefully more regular dialysis.

So to clatify that did you have multiple tests done to confirm that 26 reading wasn't a fluke or a problem with the labs? if you did labs a few days later and it's similar that's one thing, but it sounds like the first reaction was "you're fine you've been fixed up" which most of us would think to be crazy. Dialysis as a treatment option is to stabalise and support remaining kidney function, not really mprove whatever is going on with the native kidneys.

it all does sound rather odd and very confusing for you. I'm sorry.

[amycdaa]

So yesterday I got results from blood work taken on Monday. My doctor is on vacation and won't be back till next week. This is what I could get from the nurse. Gfr down to 23 from 26, BUN 38, creatnine 2.4. I have been careful with watching all the usual foods that raise calcium, potassium and etc. They all came back borderline high. There is another 24 urine collection scheduled for the 17th. I learned the hard way to severely limit my intake of food. I know that is is not good but if I eat too much severe vomiting and shortness of breath follow. I know this contributes to part of my fatigue but I have to do it this way. I'm not really expecting a miracle  with the 24 hour test because I have twice within 6 months that my kidneys are functioning at 9%. So symptoms are itchy, nausea, swollen especially in abdomen, face and fingers. Slightly in feet at end of day. The absolute worst is the insomnia which we all know is prevalent in esrd patients. I am exhausted pretty much running on auto pilot. I still have three kids in school so stopping life is pretty much impossible. I except that. Hopefully when my neph comes back next week I can get him to get me at least one day of treatment just to take some ease off.

[obsidianom]

Your numbers arent horrible but your symptoms are fairly bad. The rule on dialysis now is symptoms are more important than numbers. You probably need dialysis at this point as it is inevitbable anyway barring a transplant soon. My wife and I were discussing this yesterday. Her nephrologist waited too long to start dialysis and it was only when I pushed it was started. I figure if it is inevitable anyway , why wait and suffer the symptoms. In my wifes case she felt better after the first treatment and never wanted to stop it.     AS I keep writing, WHY SUFFER?   

[Alex C.]

Have you recently started some sort of odd diet? I've heard about certain supplements which can give you bizarre blood numbers. Could this be what's happening?

[amycdaa]

Never thought I would say this but I'm so happy to be returning to dialysis tommorrow. After five weeks and only two treatments which were a few weeks ago my second 24 hour urine came back at surprise surprise 9%. What it has been at for over 6 months. The last month has been a horrible month. As I said before I had been on dialysis for over 4 years and had reached my comfortale maintain spot. Hopefully I can get that back within a month. This whole thing started because my yearly transplant blood work my GFR came back at 26. It is still coming back at a 26. I was told my monthly labs were always to good. However, I follow my diet and fluid restrictions so maybe that included with dialysis is what helps me do well. Anyways thanks for all the replies. I use this site as sort of a comfort blanket and to see that I'm not alone in all of this crazy stuff.

[Maggie and Jeff]

I think someone along the line has lost there mind.  I mean really.

Before my wife started dialysis just over 8 years ago they gave her these options:

1) Hemo dialysis
2) PD
3) transplant
4) do nothing and die in a few months

She was at 12% function.  The nephrologist said she would live 30 to 90 days without treatment if the fluid over load didn't stop her heart sooner.

If it were me I'd switch to using Home hemo 6 days per week and tell the transplant folks NO next time they want to see if you'll die without treatments. 

Transplant is a treatment option not a cure. 

[obsidianom]

Never thought I would say this but I'm so happy to be returning to dialysis tommorrow. After five weeks and only two treatments which were a few weeks ago my second 24 hour urine came back at surprise surprise 9%. What it has been at for over 6 months. The last month has been a horrible month. As I said before I had been on dialysis for over 4 years and had reached my comfortale maintain spot. Hopefully I can get that back within a month. This whole thing started because my yearly transplant blood work my GFR came back at 26. It is still coming back at a 26. I was told my monthly labs were always to good. However, I follow my diet and fluid restrictions so maybe that included with dialysis is what helps me do well. Anyways thanks for all the replies. I use this site as sort of a comfort blanket and to see that I'm not alone in all of this crazy stuff.

I think I know what occurred. The transplant people calculated your GFR by using the creatinine estimation method. This is a very inaccurate method and prone to this type error. At 2.6 creatinine you look only to be in stage 3 or early 4 as it isnt that bad. The problem is in females particulurly it is very poor way to calculate as the amount of muscle is so variable. My wife had the same issue. She was at 2.6 to 2.8 and needed dialysis immedialtly as she has very small muscle mass and is very small. The only true measurement of GFR is through a 24 hour urine and blood test combined. That is why when they finally did the 24 hour you came back with the truer number of 9%.  You clearly need dialysis based on you SYMPTOMS. I still beleive that is the most important aspect. We tend to wait too long on many patients who then suffer needlessly before they start dialysis. The creatinine alone tends to be the issue.