What do I look for when his kidneys start to fail?

[greco02]

Question....what should I expect to see when hubby's GFR dips to 15%?  Does it make you feel terrible?  Does it cloud your thinking and judgment?  Are there some signs and symptoms I should be prepared for? 

[jbeany]

Doctors like nice concrete numbers, but 15% is just a guideline for when they want you to start.  Some people feel horrible at 20% and want to start then, some do fine at 10% without dialysis.  It's best to decide based on how the patient is feeling.  Common symptoms - swelling and fluid retention, a reduction in urine output, constant nausea, a metallic taste in the mouth that affects the appetite, an ammonia smell in sweat, headaches, fatigue.  I don't know about a lapse in judgment - but I'm sure I was a lot crabbier than normal - I felt horrible!

[Yvonne]

John's kidney function is down to 11% and still he does not need dialysis, he was sick and bad the other night and I thought maybe now but next day he was fine, he must just be careful as to what he eats and drinks as his one little 11% kidney is screaming at him to look after it. I land up being a nagging wife and sometimes think I've had enough of worrying about it.

[Rerun]

Doctors like nice concrete numbers, but 15% is just a guideline for when they want you to start.  Some people feel horrible at 20% and want to start then, some do fine at 10% without dialysis.  It's best to decide based on how the patient is feeling.  Common symptoms - swelling and fluid retention, a reduction in urine output, constant nausea, a metallic taste in the mouth that affects the appetite, an ammonia smell in sweat, headaches, fatigue.  I don't know about a lapse in judgment - but I'm sure I was a lot crabbier than normal - I felt horrible!

Nice job!   

[paris]

Greco,  jbeany's answer was perfect.  I have been around 15% for some time.  I have all the symptoms she listed and lately I notice that I am getting "foggy" in my thought process.  After I have had a few days of vomiting, I start thinking clearer.         My nephrologist knows all of this, but we still are not starting dialysis.  Good for you for asking questions and wanting to know what to expect for you husband   

[greco02]

On another post I confessed to calling his shrink and report him for non compliance on his meds.  Well, I just got a call back and my husband signed a release allowing the psychiatrist to talk to me about hubby's mental health.  It sounds like the doc was able to convince hubby to go back on his meds.  He also told me that family members call him all the time and it is because they are concerned and loving.  Hope I don't have to pack a toothbrush and sleep at my daughters house tonite.  Maybe knowing I loved him enough to call his doctor will help him realize I am trying to help.   When he is crabby I get the brunt of it.

Thanks everyone for listening.

[TiffanyJean]

In the three months before Richie was diagnosed, his appetite had gone away so much that he was only eating (maybe) 1 meal a day, and even when he would have a meal he would just pick at. The only thing he did "eat" constantly was ice; sometimes thats how we would choose where we eat, when we would eat out, if it had good ice. It's pretty funny now that I know that was one of his symptoms. He also had become a bit more agitated, and was tired and short of breath a lot.

When Richie was diagnosed on Feb. 23 they asked us all sorts of questions about the different symptoms that might have signaled he was having kidney failure. The things mentioned above were the most recent sings; but as he was growing up his urine was always very foamy, so much so that even after he would flush there were still bubbles. The doctors told us that meant that there were high amounts of protein coming out; of course they asked us if we ever thought to mentioned it to his doctors while he was growing up, of course the answer was no - to Richie and all of us it was normal, just the way he was.

His diagnosis was that his kidney function was at about 5%, at the time he was still making urine fairly regularly, although after several months on dialysis his urine production decreased. At this time his kidney function is at about <1%. Which alot of people (dialysis nurses, etc) are surprised at how well he looks, and acts - the doctors say its only because he's still young 25.

The one thing I have learned over the last year is that no two kidney patients are the same, and that as one of the nephrologists we've worked with says "medicine isn't a science, its a guessing game; we just have to look at each patient and guess what will work for them." We love him, he's Eastern European and very to the point, doesn't beat around the bush at all.  All of our nephrologists are SO amazing, they all have become an part of our extended family - heck we see them more often then some people see there immediate family!      

Keep an eye on things, and don't hesitate to ask the doctors questions about any symptoms or maybe symptoms; something that we have learned to do and helps us alot is to write things down. Anytime he has a really crappy day or something like that we take a moment to jot it down, it really helps especially since we only see our primary nephrologists once a month. You are your husbands best advocate, you see everything - so ask lots of questions and make sure you get answers, as well as anything else you want. Squeaky wheel gets the most grease.

Hope my ramblings help....   

[kellyt]

When I transplanted in Nov. my GFR was at 7 and I had been bouncing around between 6 and 7 for a few months prior (I was never on dialysis).  I was receiving biweekly Epogen shots, but other than fatigue I felt great.  I lost my appetite for a brief period, but that came back.  I also had restless legs and the ammonia taste in my mouth.  Fortunately, I never got headaches, nausea, etc.

When my GFR got to around 11% my nephrologist scheduled my for my fistula (Oct 2007).  He began holding a dialysis chair for me since March 2008 and thought every time he saw me (every 3 months) that I be starting dialysis.  But I never did.  Thank the LORD!

Hopefully his doctor will go by how he's feeling and not just by his labs alone.  My doctor always said "I don't want to start you if you don't need it, but I surely don't want to wait too long".

[willowtreewren]

Ah,
Kelly mentioned the restless legs. That is one of the symptoms my husband had when his functioning dropped low enough to start dialysis.

One thing I would like to add is that over all, my husband felt fine, but he had NO energy. He would take a long nap after coming home from work and then get up and go to bed. He did not really think he needed to start dialysis when he did, but started feeling better almost immediately, and when he switched to NxStage (as soon as they had gotten the needles up (or down) to the correct gauge, he felt even better still.

He was at 10% when he started.

A good thing for your husband is to become as informed as possible. That may not be something he wants to do, and if not, do it for him as his loving partner.

Aleta

[dwcrawford]

Here to get suggestions only.  Don't take anything from me as I've been on dialysis exactly one  week.  Before I had maybe that metallic taste people are talking about (or maybe I imagined it) and was kind of lethargic like's Willow's husband (but then old guys tend to poop out).  That was it.  It was all based on BUN and Creatine (and I have no idea what they are)

One week in, I have the metalic taste (actually whole mouth (roof, teeth, etc. feel as if I've been swallowing metal shaving., I'm more lethargic than ever, I'm dizzy, blood pressures going up and down, blood sugar all goofy, my  knees and back are feeling weak if I stand too long (no nasusea but almost everything else people talk about.  So go figure.  I've tried my best to stick to the diet I was given but it is so difficult.

Not to bring anyone down, but my new quote it "dialysis sucks".

[kitkatz]

Well DW now you know why IHateDialysis. com was born. It comes from everything that happens when patients are on dialysis. It is alot of stuff to put up with.  I hope it gets better for you soon.  I remember almost passing out in a dialysis center the first week I was on the machine.

[dwcrawford]

Yea, and to make it worse  I just had to turn down an invitation to lunch.  and that sucks.

[kitkatz]

Soon you will take lunch dates and rearrange your times for them around the D times.

[Yvonne]

The head nurse down at the renal unit where John goes to have his blood taken says she will only have to take one look at John and she will know that it is time for him to start dialysis. The longer he can stay off it the better she said as it brings a lot more complications with it. They think he is a walking miracle after what he has been through.

[Jean]

I think John is a walking miracle also. Thumbs up to him, he is my ideal and my role model. And a lot of applause to you also, doing what you are doing and being a great caregiver.

[mcmkids]

With my husband, his numbers were awful but he still looked and felt good. All of a sudden he just got really sick. He was tired all the time and very nauseated. Those were the two biggies. He could have slept all day and night and his appetite was terrible because of the nausea. Compazine helped get him over the hump until his catheter was placed and able to be used. Take care!

[cedar]

My mother refused to go on dialysis until she collapsed in a store one day and had to be rushed to the hospital, unconscious.  I could tell for years before, just by looking at her that she was not well.  Her face was swollen, and as time went on I had a "feeling" her health was more and more precarious.    She would not voluntarily go to dialysis though, and when asked would say she was "fine", and what was YOUR problem.     I knew she was not being rational, and did not want her to die, but felt my hands were tied.   It nearly killed me from stress, and it did kill my father eventually.  Our family fell apart, not because of dialysis, but because of my mother's chocie to postpone treatment until she had to be recused by emergency personel.   We had years to prepare but she would not allow it, and eventually it became a life or death emergency.   I wish her doctors had been able to contact us, her kin.  I wish we had all gone in together for some sort of discussion.  I realize it is the person's choice, but in a family, or with close friends, the decision affects them and they do deserve to not be left out.   Even if they are not the ones whose kidneys are compromised. 

[greco02]

Jims GFR is down to 20 (a 9 pt drop from one month ago).   I called the Neph yesterday and left a message but have not heard back from him.  I have been busy do I didn't push it.  I will not force Jim to go on dialysis or have a transplant.  He has numerous medical problems (as many of you do) and being on dialysis may just be the last straw for him.  I don't know how quickly he will drop to a GFR of 15 but at this rate it would appear to be sooner than later. 

[paris]

Mine went from 30 to 15 in a few months, but has only dropped a point or two over the past two years.  I hope your Jim can level off for a little while longer.  Keep us updated.