Tests indicate kidneys not functioning, many questions

[hddana]

I have had two blood tests for kidney function and a 24-hr. urine test. Although I was not given numbers, I was told that my kidneys are functioning at less than 50% and to set up an appointment with a nephrologist; that is set up for next week. The neph. office called and had me go for a kidney ultra-sound scan and do another 24-hr. urine collection/blood test. That will be tomorrow.

I have high blood pressure (10yr), RA (25yr) and have taken indomethacin max dose for 25yr minus a couple of months when I tried Motrin and Celebrex. I used to have lots of UTIs but I was put on Bactrim for prevention of those three years ago. I was told to stop the Bactrim this week.

What is the normal progression of kidney disease? Is it ever reversible or can people maintain 40% or so of function for the rest of their lives? I know (although I don't dwell on it) that RA statistically shortens one's lifespan. What can be said of those with chronic kidney disease? I don't want to start a big pity party for myself, but the knowledge that my lifespan might be shorter still would help me make some decisions both financially and personally, help me plan for the longterm. And I know that every case is individual, but in general, what is the typical course of events?

Since I have RA and take the indomethacin, and that is not good for kidneys, what do people do instead? Are there other ways to reduce inflammation and pain? I always have a very high SED rate. The few times I have ever missed a dose of my indomet. I have felt REALLY AWFUL, not just in a joint but all over. So what do people with RA do in the case of kidney disease?

When should one begin a very restrictive diet? The diet restrictions I have read about would revolutionize our lives to say the least; I cook for two families to ensure that everyone has good home-cooked, healthy meals.

Those are the most pressing questions I have, and any advice/answers people can provide will give me some things to ponder before my appointment. My husband is going on the appointment and it might be easier to wrap my mind around some information beforehand and help him prepare as well.

TIA,
hddana
:?:

[DoriSchatell]

Dear Hhdana,

It is certainly a big shock to learn that your kidneys are not working as they should, but please don't panic. With 50% kidney function, you have time to plan and to learn, and even to keep your kidneys from getting worse.

Some of your questions we can address, and some you'll have to ask your doctor. (We are not doctors). Let's take one at a time:

What is the normal progression of kidney disease? Is it ever reversible or can people maintain 40% or so of function for the rest of their lives?

Chronic kidney disease often--but not always--progresses. It is possible to live with as little as 15% of kidney function without needing renal replacement therapy (dialysis or transplant). At 15% or less, treatment is needed to maintain life. There are things you can do to preserve your current function and prevent further damage, and your nephrologist should be able to tell you some of these, e.g., to adjust your meds or switch them to less nephrotoxic (kidney damaging) options. You can read about chronic kidney disease on the Life Options site, at http://www.lifeoptions.org/kidneyinfo/ckdinfo.php. I don't personally think it's time to worry about a shortened lifespan. Even if your kidneys do fail completely, if you are actively involved in your care and get good treatment, you could live for decades (depending on how old you are now).

Since I have RA and take the indomethacin, and that is not good for kidneys, what do people do instead? Are there other ways to reduce inflammation and pain?

Questions about drug interactions and the overlap of two chronic diseases are best asked to your doctor--or even better, to your kidney doctor and your rheumatologist, who will, hopefully, work as a team on your behalf. You may need to do some follow up and be sure that they are talking to each other and keeping you in the loop.

When should one begin a very restrictive diet? The diet restrictions I have read about would revolutionize our lives to say the least

.

Diet is largely unchanged until the kidneys fail completely. (Some doctors recommend a moderate protein restriction and limit salt). The diet you may have read about is called the "renal" diet, but this is not really the case. It is an in-center hemo diet. Patients who chose any treatment option other than in-center hemo (there are 5 ways to do home dialysis, for example) have less limited diet and fluids because other forms of treatment are either continuous (like PD) or often offer longer or more frequent treatments, which do more of the work that the failing kidneys can't do--and which means that you don't have to do as much with diet and medications. In the U.S., 91% of patients who need dialysis get in-center hemo, and most never know that other options exist. Please see another Medical Education Institute site called Home Dialysis Central http://www.homedialysis.org to learn about types of home treatment, where you can get it, what to expect, and much more.

Please feel free to ask more questions after you see your nephrologist.

[hddana]

Doris,
Thanks for the thoughtful and honest answers. I will pop back in after my visit to the nephrologist. But your answers will help me prepare for that visit.

I am beginning to realize that it would be worth any amount of effort or dietary change to keep kidney function; the thought of dialysis whether at home or in a clinical setting must be pretty motivational for most people. I admire the will and courage of those who deal with this every day. My mother had serious health problems she dealt with for over 20 years even though she died at age 43. I always think back about her and how she kept a good attitude even during some bad times. It has helped me keep perspective on my problems.

It will be interesting to see what they do about my arthritis meds. I just hope it doesn't involve going cold turkey.

Thanks again for your time in answering me.

[Beth Witten MSW ACSW]

Hi Tia,

I worked for 16 years as a social worker in dialysis and transplant programs before working with Medical Education Institute. I still help to educate people who have kidney damage for the Missouri Kidney Program.

I'd suggest that you read those modules that interest you on Kidney School (www.kidneyschool.org). You might want to start with the Introduction and Module 1. If you do the interactive version, you'll get an action plan at the end based on your answers through the module.

Sometimes it's had to think of the right questions to ask. To help you think of questions, check out the patient interest checklist for people that have kidney failure (Checklist #1 - http://www.lifeoptions.org/catalog/p...s/patintes.pdf). Although you don't have kidney failure, it may give you ideas of some questions you can ask your kidney doctor in future visits. Don't feel like you need ask them all in one visit. Pick a few of the most urgent ones first. I hope you'll have plenty of time to them answered while you're doing all you can to protect your kidneys.

[hddana]

Beth,
Thanks for the reply. I went thru the modules and found them somewhat helpful. It sort of puts you on the spot about setting goals, huh?

hddana

[Beth Witten MSW ACSW]

I know it's hard for anyone to set goals but patients have told us that when you have a chronic disease, you need to set goals and constantly monitor your progress toward meeting your goals. If you don't, they tell us, it's easy to backslide without realizing it for some time.

Our goal is to help people with kidney disease realize that they can set goals and reach them. The trick is helping people to be optimistic and realistic at the same time. From what I've seen people with kidney disease achieve, the two do not have to be mutually exclusive.

[hddana]

Had a nice long visit with nephrologist. Second tests show still a higher than normal creatinin level and a clearance of 60...so yes, she agrees something is damaging or has damaged my kidneys to reduce function. Scan was good, no protein in blood problem, potassium good,etc.

My kids frequently tell me, don't spaz out, and I guess this visit was sort of similar--don't spaz out, let's approach this calmly and see if we can find out what is at play here. She is pretty sure it's the arthritis meds--isn't ironic that I never pursued any of the newer drugs because they seemed more risky to liver and kidnyes--and wants me to visit a rheumatologist. She also wants me to take my blood pressure frequently and write it down for the next visit. I don't think my cuff is very accurate, but she said to bring it in and we'll compare it. And cut down on salt. Didn't advise cutting way back on protein since I am apparently a little anemic.

I will see her again in December.

Thanks again for your replies.

[DoriSchatell]

Hi Tia,

60% function gives you an even greater "cushion" than 50%, so that's good. Your nephrologist's approach seems very prudent, and involving the rheumatologist, too, makes a lot of sense. Between the three of you, I hope you can figure out some steps to protect your kidney function while still controlling your arthritis.

[hddana]

Yesterday I met with the rheumatologist and I guess I came away more or less in shock. He agrees that the indomethacin is a likely factor in what has happened to my kidneys. He seemed to question (as others have before) the exact nature of my inflammatory disease. I guess the most disturbing thing from the visit was that he not only asked me to stop the indomethacin, he wants me to replace it with Vicodin.

I told him I had reservations about that, primarily based on my mother's experiences in the years before her death at age 43. She had a really severe case of RA and eventually was on so much pain medication that she basically just ceased to have a life other than anticipating her next pill or shot. I was blown away by the cavalier nature of the rheumatologist's just handing me a large bottle of the stuff with lots of refills--it felt to me like giving me a loaded gun almost. I can imagine having pain strong enough to use them, but I can't imagine that this medication would be a daily, on-going solution for me. Looking up information about it (sorry, a retired librarian is an information junky), I was struck by how many sites there were with information about getting OFF this medication.

I tried to get through to the dr. to discuss it further, but they were closed for the weekend. I knew that my local FP had not been kept much up-to-date on this whole kidney issue, so I booked an appt. with him and went in this am. He usually has a calming effect on me, and it worked again. He said to try to stay off the nsaid while more testing is done; actually if you review my labs from the past 2 years (since moving here) you can see that my levels have dipped into normal and then gone a bit above normal. He is feels this is probably the result of some type of autoimmune problem, whether we call it RA or not. My SED rate has been above normal even on the medication. But he said he could understand my dismay at the Vicodin especially in light of my mom's history, and that since it contains some acetominophine, maybe just taking a Tylenol or two when I need it would be better than immediately resorting to the narcotic. He did not seem to think there is an urgent need to rule nsaid use completely out of the picture.

Actually today without the nsaid, I have had some pain, but not as much as I had feared. I did take one Tylenol. I have a bad cold which isn't helping. I am supposed to call the rheumatologist Wednesday and let him know how things are going, then I see the nephrologist early in December. The rheumatologist had them draw blood for a test to verify or disprove the RA label, and he also had some x-rays done. I guess I don't care that much what has been causing the joint pain, stiffness, and fatigue I have lived with for 25 years. The dr. who first diagnosed my case was the most respected rheumy in my area at the time, head of a big research project and author of countless articles, on the faculty at a large medical school,etc. So I don't think he was the type to make a casual diagnosis. But really, who cares what it is? I just want a life relatively free of pain/stiffness/fatigue but without dependence on narcotics. Is this going to be too much to ask with CKD?

Sorry for the length of this, is helped me just writing down my thoughts.
hddana

[DoriSchatell]

Dear Hhdana,

I'm sorry that your visit with the rheumatologist was so frustrating and frightening for you. It sounds as if you have a terrific internist who really listens to you, and it's good that you'll get the results of the tests that were done--even if you don't care about the cause of your joint pain after 25 years, if the cause IS different, it could lead to a different course of treatment that might be more sparing of your kidneys.

I do think that you might want to get a second opinion from a different rheumatologist. All doctors are not the same, and even all specialists are not the same. It didn't sound as if you were getting from this doctor what you need, which is a possible alternative for treating your pain (short of heavy duty pain meds) that won't harm the rest of you. Pain pills address the symptoms but not the underlying causes, and, as you know because of your mom, tolerances can develop over time (although the general thinking is that "addiction" does NOT occur when there is pain, only when there isn't).

Anyway, maybe you can use your librarian background to good purpose by finding another specialist to confer with?