Need second opinion or am I in denial??

[marlinfshr]

I am probably in denial but am starting to have some questions I need answered . I am about to get an appointment to have a PD catheter installed but am thinking of putting it off until I get a second opinion.

Is it normal for a dialysis clinic to check creatinine?

Why I'm asking is that last month when one of the kidney doctors made her rounds I asked what my last creatinine was at and she said 5.6. The other day I asked one of the nurses at the Davita clinic what my latest was and she said they don't test that. Now I'm wondering if the doctor gave me the level it was at when I was still in the hospital. I've been on dialysis for 2 month's now and when in the hospital a kidney doctor said my function might just come back since it was the iodine dye used to place the stents which took them over the edge.

Shouldn't the DRs make periodic checks on new patients to see if their kidney function is returning?

Another thought is that I went in with a heart attack on a Wednesday with a creatinine of 3.8 (normal for me was 3.8 -4.4 for the past 5 years). Yes it was high. The dye took it up to 7.2. Then I was put on a slow dialysis until friday which took it down to 3.2. However, the cardiologist felt I needed another stent so off to get that done. More dye. I never heard a number but it slowly crept back up towards 7 over the next few days. So I got a catheter in my neck and have been on dialysis ever since. I'm wondering if my kidneys are returning or not and would like a current creatinine test.

After a week of dialysis my kidney doctor told me that he thinks it's permanent now and they won't pull me off dialysis unless my creatinine gets in the low 2's. HUH??? I was living fine with NO symptoms for the last 5 years with it around 4. Is this normal? I call this one doctor DR dialysis because they were drooling of putting me on it a few years ago when my gen practitioner saw my creatine level and told me I should see a kidney DR. This DR was talking of permanent dialysis the day I got admitted to the hospital and had the initial rise due to the dye.

Another problem I was just brought aware of is time on dialysis. One of the nurses at the clinic asked if I had talked to the doctor to reduce my time yet as my "report cards" have been great. I said I thought the doctors went over my tests to determine what was best she said it is strictly up to me to ask. Why I'm wondering if I am getting over dialysized is because I am on their minimum fluid withdrawal and I still feel dehydrated when I get done with my 4 hours of blood sucking. Everything I drink I pee out and it still has the same pale color yellow its been for years.

I have not gotten any 24 hour urine tests which I was told I'd be getting soon.

My anemia has gone from 8.1 two months ago while in the hospital to 10.5. Still anemic but getting better on every test.

This last test my phosphorous was a little high. I need to stop my coke addiction. However, the last report card I got, a dietitian went over it with me and was shaking her head the whole time when I was telling her what I was eating and drinking. She couldn't believe my numbers were so good with the diet I was eating.

Other doctors I have asked about this kidney team haven't had much good to say about them. I live in a rural area on the lower eastern shore of MD and this is the only kidney group around. I'm wondering if it's best for me to cross that bridge to the western shore and see a kidney doctor in Baltimore to see what he has to say.

I know I need a kidney. I have an orientaion scheduled in august for that. I'm just wondering if I should get another opinion before getting the PD catheter. If my creatinine is high, I accept that this is permanent as I understand the 5.6 I was told it was last means dialysis. However, if that 5.6 was taken while in the hospital only a couple days after getting the dye in my artery for the stents, I would like some more recent numbers tests being done to determine if dialysis is even necessary. If, after a recent blood test my creatinine is still high, I'll admit I'm in denial and then schedule for a PD catheter.

[MaryD]

I think the nurse might have her wires crossed or misheard your question - creatinine is tested every time when I get done.

Kidney function rarely returns if you've had bad results over a period of time.  Kidney function returning usually happens if function stops as a result of something traumatic like food poisoning or swine flu (Exception see 'Gerald slept here' posts)

The dye has probably knocked out more of your kidney function, but it sounds as though the dye was a necessity.  Your kidney function may get back to where you were before, but it may not either.

My creatinine was high for years before I started PD.  They look at all your results combined to decide whether you should start dialysis.

Your pee will look perfect till it stops.  It's just that your kidneys are not getting rid of the phosphorous, potassium, urea etc from your blood stream.

High phosphorous will weaken your bones.  And I'm told you will end up with little bits of bony stuff floating round your eyeballs.  I'm not sure that the dye would have affected your phosphorous levels. (But I wouldn't stake more than an eyelash on that)

High potassium will stop you muscles working properly - this includes your heart.  Low potassium is not good either.

On getting a second opinion - if it makes you feel unrushed it might be worth it.  It's always better to get the catheter in early - give it a month or two to settle in.

As for changing doctors - that's up to you.  You should be able to ask your doctor anything (like all your questions here) and he should be able to explain things in a way that you can understand.

Hope this helps and that I haven't led you astray.  Good luck       

[Jean]

this is an interesting post. Please keep us posted as to what happens. I wish I could help, but I have no experience in this. Best wishes to you.

[cariad]

I know I need a kidney. I have an orientaion scheduled in august for that. I'm just wondering if I should get another opinion before getting the PD catheter. If my creatinine is high, I accept that this is permanent as I understand the 5.6 I was told it was last means dialysis. However, if that 5.6 was taken while in the hospital only a couple days after getting the dye in my artery for the stents, I would like some more recent numbers tests being done to determine if dialysis is even necessary. If, after a recent blood test my creatinine is still high, I'll admit I'm in denial and then schedule for a PD catheter.

You seem to have answered your own question here. People in denial do not ask if they are in denial and will argue to the last with anyone who suggests that they are.

Get a second opinion, ideally we would all do that when facing any major health decision. There was a woman on here from the Detroit area, your story reminds me of hers. She was put on dialysis and her creatinine was around 1.8 when she finally got off dialysis and I seem to remember a sleazy nephrologist and lies of omission.

I seem to remember other members saying that they don't really check creatinine anymore once you are on hemo dialysis, although the test was probably run because I don't know how you could do any blood checks and avoid it. I was also told that the creatinine clearance was not done either once your decline reaches a certain point, and your starting creatinine was quite high already. Anyhow, I would switch doctors if at all possible, because you clearly don't trust them and for your own sanity, you should try to find medical staff that you feel at least have your best interests, and not theirs, in mind. That can be quite a challenge. Good luck!

[BattleScars]

Every case is different but you may want to get a second opinion. I know doctors don't just determine if you need dialysis on creatine alone, there are other factors although I really don't know what those are. Do you know what your GFR is? I didn't start dialysis until my GFR got down to 8. My creatine was anywhere from the 5's to the low 7's before I got my PD catheter placed. It doesn't hurt to see if some of your kidney function returns and get that second opinion. Just keep taking care of yourself wand watch what you eat. Maybe you can get your numbers down and stay off dialysis until you can get a transplant. I wish you the best.

[jeannea]

I would say get the second opinion. Even if the second doctor tells you the first doctor is doing everything right, it will help your peace of mind. Totally worth it. And maybe the other doc will have great advice.

Creatinine was always tested when I was on dialysis. But they didn't put much emphasis on it. The paper they handed out with my results didn't list creatinine. I had to ask if I wanted to know the number. Please make an effort to watch your phosphorus intake. You can really wreck yourself with high phosphorus.

I suspect at this point you will have to stay on dialysis. There's very little chance of going back to where you were before. You can ask but the answer is usually no. If you want to do PD then I think you might as well schedule the surgery.

It's tough to face all this but you'll get through it.

[okarol]

I am pretty sure that the creatinine level would not mean much while receiving dialysis, because the machine is acting as a kidney, although an imperfect one.
The creatinine level when you are NOT on dialysis is what you're interested in, I suppose, so ask the nephrologist how they determine whether any recovery has taken place.
Good luck!

[Restorer]

Some clinics check creatinine, some only check urea. Some clinics don't share computer systems with medical groups, so your numbers at the clinic and the numbers your nephrologist has at their office may be different - of course, the nephrologist would have access to your latest clinic numbers while doing rounds at the clinic. It all depends on the doctor and the clinic.

Creatinine and urea are about equivalent for estimating kidney function. If your kidney function were returning in any significant way, your urea numbers would go way down, though it's possible the staff at the clinic only bother to look at your Kt/V or your URR, which won't tell them as much about your native kidney function.

[marlinfshr]

I had a talk with the PD nurse finally and learned a few things. I guess the best thing for me is to go with the PD catheter. She said I should get on PD ASAP because it's a lot easier on my body and the catheter I have in my neck is really bad news. She also stated that if I go to another doctor group I won't be able to be dialysized at this Davita clinic anymore as this one only uses this particular group of doctors. So, when I switch to PD and if it doesn't work out, I'll have to use the clinic about 2 hours away----not going to happen. She also stated that there really is no way they can tell if any function is improving when on HD but will do urine tests and adjustments while on PD to get estimates then. I have an appointment in August to see the transplant team from UMMC in Balt as they come over to this side of the bridge once a month for those of us over here. There will be a kidney DR then I can talk to but I might just be on PD by then.

Obviously, I'm not 100% happy with whats going on, or with my current group of DR's. Really far below 100%, but I do know I need a kidney based on all my research and previous #'s anyway. In that case I don't want to piss any DR's off and/or go skipping treatments while trying to get a second opinion which probably won't help anyways. But it might make them not approve me for a transplant.

I've accepted that I've been in denial but I feel like nothing has been done. I feel great and my anemia is going up without medication. Now I'm worried because the nurse mentioned several drugs that most dialysis patients are required to take and that they run about $300.00 dollars each for a 30 day prescription. She said if I'm not on them now I'm sure to be on them within a couple month's. She also stated thats when I'll really start feeling the effects of dialysis. Does she just sound like a pessimistic dialysis salesman who wants me to get on PD or is this all true?

[Sydnee]

Although I would say yes you are in denial I don't like being pressured and that is how I read your conversation with the PD nurse. If it were me I would go get that second opinion.
 
My husband started dialysis with hemo and chest catheter to boot switched to hemo using fistula and finally PD. The monthly blood draws measure the same things, all the blood work is there. They do measure hemo and PD inadequacies differently. But the other tests should all be the the same.
There is no reason to skip a treatment while getting a second opinion.
Not sure why the PD nurse would try to scare you.

Good luck

[marlinfshr]

Thanks. I think I am just coming out of denial. All the reading up I've done I think the best thing for me is to just go ahead and schedule the operation for the PD catheter. It seems I'll have more freedom but with more responsibility. I'll go with what I've heard about HD being harder on the body, mainly because I recently had a heart attack (what put me in this mess) and I don't want to put any more strain on my heart then necessary. The transplant team should have all my numbers and test results anyway when I go and see them in Aug and I'm hoping they'll have a lot of good info for me.

As far as the PD catheter, I guess I can get used to it. I've gotten used to this one in my neck/chest---though I am really paranoid about it getting snagged on something and pulling out.

Meanwhile, I'm just going to go on with my life as normally as I can. Though I may have had to quit my career, I'm still able to do what I love periodically if needed. It's just the scheduling that is screwing me up.

[jeannea]

Regarding PD, you will get used to the catheter. Some people wear a belt under their clothes to tuck it in. Some people tuck it ib their underwear. I had some belts but mostly tucked it in my underwear. I would get little tugs pretty often that didn't really hurt. Twice in 2 1/2 years I tugged it hard enough that it bled. My nurse checked it and reassured me and all was ok. You can take a regular shower with a PD cath which you can't do right now.

Now for the doctors. Yes you need to see the doctors attached to your clinic for your regular visits. This does NOT mean that you can't get a second opinion. When you make your appt you can tell them it's for a second opinion. Good doctors will respect that and help you with it.  After you get evaluated for transplant, you will be somewhat followed by that team as well. I would hope your docs would not be pissed by a second opinion. That's really sad.

Next the drugs. You will need phosphorus binders. PhosLo is a pretty cheap one. However if that doesn't work then you have to get Renvela. It depends what kind of coverage you have. Renvela was costing me about $125/month. You can save some money by watching your diet. For me, PhosLo made my calcium too high and I had to change. Next is Sensipar. This is related to your parathyroid levels. For that I paid about $200/month. But I was on dialysis for 18 months before I needed it. Everyone is different. The rest of your meds should be pretty affordable.

Ask all the questions you need. Don't let anyone scare you or push you around. You can do this.