Jesus Christians Donate Kidneys

With the wait for a cadaver kidney getting longer and longer, the ability to find a living donor becomes more important. I was fortunate to find one extended family member who qualified to give me a kidney, but she was the only family member who did. Like all the other members of my family, all the friends who volunteered had some health problem that disqualified them. Some of these problems were major ones (being a cancer survivor) and others were relatively minor (elevated blood sugar short of diabetes).

But I was fortunate that one volunteer did qualify. Many other kidney patients are not so fortunate and must wait for years and years, undergoing thrice weekly (at least) dialysis treatments, until they move to the top of the list for their blood type in their OPO region. (See AAKP's "Before the Transplant" for a discussion of how the transplant waiting lists work.)

So when a new source of volunteer donors comes to light, kidney patients need to know about it.
The Wall Street Journal of December 13, 2007, had an article about a religious group in Australia called "Jesus Christians" who volunteer to donate one of their kidneys as a matter of charity encouraged by their faith.

It is an interesting story of one Jesus Christian who had volunteered to donate a kidney to a patient in Canada and who was cleared by psychologists at the Toronto General Hospital transplant center. But before the surgery could be done, the volunteer's parents objected, saying he was under the influence of a religious "cult." Swayed by the parents, the hospital cancelled the surgery.

Unlike Toronto General, however, the University of Minnesota has accepted Jesus Christians as transplant donors, noting that many living donors express spiritual or religious reasons for wanting to donate a kidney, and I would expect this to be especially true of people willing to donate to strangers.

After all one man's cult is another man's religion, as is often seen in the case of Mormons and Scientologists, to mention just two religions quite a bit larger than the Jesus Christians but which are nevertheless often called "cults."

So if you don't have friend or family member who can qualify to give you a living donation, you might just consider the Jesus Christians.

Talk with the Experts, No Matter Where You Are

Through my free subscription to the AAKP on-line newsletter, Kidney Transplant Today, I learned of a new resouce that has the potential to be very valuable, especially to people who don't have a neprologist close by. It is called "AAKP Hotline." According to AAKP, "This FREE, one-hour conference call educates individuals on a variety of topics affecting kidney patients and their families. Conference calls feature presentations given by kidney healthcare experts from across the country and provide you with the convenience of gaining knowledge from the comfort of your home or office. Time is provided at the end of each call for participant questions."

The AAKP HealthLine call is scheduled for December 11, 2007 was titled Understanding Anemia and the Importance of Exercise, and covered topics including what anemia means, treatment methods and why it's important to stay active.

I didn't participate in the conference call, but if you're interested, I suggest visiting the AAKP website at www.aa kp.org to learn more.

A Few Quick Resources

One of the most helpful things, I've found, is a listserv kidneydisease@mailman.srv.ualberta.ca .

Both patients and health care professionals participate, and people on the listserv don't seem to bulk it up with a lot of unnecessary responses like "Gee, that sounds so awful" or "Thanks for sharing."

I had checked out a Yahoo group, and I found it so crowded with stuff like that. Not only did it take a long time to find the really useful information, but my computer is ancient (I won't even admit how ancient) and my modem so slow (yes, that slow), that I just couldn't find the time to participate in it. And the one post I attempted to make to it never showed up. Or at least it didn't show up before I just gave up on the group.

For general informationn about kidney disease, Kidney School is a very good first start.

The second place I would go, for information and support, is the American Association of Kidney Patients. (AAKP) They have some very good booklets about the various stages of chronic kidney disease, and when I knew it was getting serious, I went to one of their annual conventions and found so much support and information there, I have supported them ever since. I haven't been back to another convention, but I think about going every year.

Then there's the grandaddy of kidney non-profits, the National Kidney Foundation. But it is so big and so comprehensive that I would recommend starting with the AAKP.

UPDATE: I just got my first emailed newsletter from transplantliving.org. It has some crucial information I wish I had had when I first qualified for a kidney transplant: that you can be listed at multiple transplant center from the get go. To read more about this, and about moving your wait time from one center to another, visit the site's information on "Before the Transplant."

Why DialyBlog?

I call my blog "DialyBlog" because I first thought of doing it, and registered the name, when I was contemplating beginning dialysis within a matter of months, and I wondered how I would ever fill all that time.

I signed up at Blogspot (now Blogger and part of Google) under "DialyBlog" as in "DialySIS." Get it? Well, my husband doesn't. He still can't figure out how to pronounce it, and he first thought it said "DailyBlog," which is a sort of pedestrian name.

I thought I'd get myself a laptop, talk the dialysis center into establishing a wireless network (and perhaps even pay for it myself if they were willing but financially unable to do it), and surf and blog while "on the machine."

Well, I still don't have the laptop.

And I managed to keep myself pretty well occupied at the dialysis clinic. If you have a choice of clinics, I highly recommend as a criterion the number TV channels they offer. The more channels the better. I've been mighty bored when visitng clinics that only offer 7 or 8 channels.

But once I got my transplant I found myself with time and desire to actually write the darn blog. So here it is!

My Favorite Dish: Eating well with kidney disease

In the months before I started dialysis, maybe a whole year before, I lost my appetite.

Nothing really tasted good, and a CKD patient, especially one facing ESRD pretty quickly, has to radically restrict potassium, phosphorus and sodium in their diet, as these can no longer be filtered out of the blood my the failing kidneys.

Phosphorus can be "bound" in the gut and eliminated with the, shall we say, stool. This used to be done with calcium and alumninum binders, but each of those created other health problems for the kidney patient.

Fortunately, there was recently developed a totally undigestable (and therefore metabolically neutral) phosphate binder now sold under the brand name Renagel ("rena as in "renal" and "gel" because it becomes a gel in the gut, where it binds the phosphorus).

Unfortunately Renagel is very expensive. Another reason to get health insurance when you can get it through a group (so you're not denied for having kidney disease), get insurance that has drug coverage, and get insurance that can be converted to a individual policy if and when you leave the group.

Sodium can raise blood pressure, and high blood pressure is both a cause and a result of kidney disease, so it is very important to limit it. Fortunately that's not too hard, especially if you eat and cook primarily with unprocessed foods.

But potassium, that's the really dangerous one. Too much potassium can actually stop your heart. That will kill you faster than the kidney disease. You therefore have to know what foods contain potassium, and how much they contain, so you can really keep to the limits. The American Association of Kidney Patients (AAKP) has a nice little booklet listing the potassium, phosphorus and sodium content of many foods, including some fast food items.

But an even more comprehensive source is the USDA Nutrient Data Base, which you can search here.

For a more comprehensive discussion of kidney diets, try the National Kidney Foundation, which has a nice on-line cookbook for kidney patients who have already started dialysis.

However, the diet for CKD patients and ESRD patients who have not yet started dialysis is slightly different, primarily in restricting the amount of protein in the diet.

So with all that as background, here's the story of my favorite dish.

As I mentioned, for months before I started dialysis, I had no appetite and was often nauseated. My husband bravely took over the cooking, and he developed a dish which we call "phish." (From the old Andrews Sisters song "Hold Tight" in which there's the line, "I get my favorite dish - fish."

Potatoes are high in potassium, and must be reduced in the diet. Our standby starches therefore became rice and pasta.

Protein had to be reduced, so he used only a little meat. (With protein highly restricted, doctors recommend you eat "high quality" protein, which generally means lean meat or fish.) He sometimes used leftover chicken, fish or beef, and he sometimes used lean sausage.

But the bulk of the dish was low-potassium vegetables: garlic, onions, green beans, bell peppers, asparagas, along with a little bit of broccoli (also high potassium, but a good source of calcium, so permitted in small doses.)
He sauted the vegetables - always using plenty of onion and garlic - in olive oil, used a low sodium, low potassium herbal mix like Mrs. Dash as an alternative to salt, and tossed in the leftover meat just to heat. (If he used sausage, he cooked it separately and drained off any fat from the cooking before adding it to the phish.) He put it on top of the rice or pasta, and bon appetit!

This dish is so good we still eat it often. After starting dialysis, I had to increase the protein in my diet, so he just put in more meat.

Because my husband has prediabetes, we are starting to think about the glycemic index, and we've heard that pasta served al dente actually has a pretty low glycemic index, so we've been using pasta more in our phish lately. (Note: Diabetes is the Number One cause of kidney failure leading to dialysis!)

It's not so bad. Make dialysis more comfortable.

This is one of the first things I want to say to people who have been told that dialysis is in their near future.

I was on in-center hemodialysis for 2 1/2 years before I got a kidney from my niece.

It wasn't so bad.

One thing I found indispensible in handling hemodialysis was a cream that would numb the area on my arm where they inserted the needles. It is called EMLA and I bought it on-line from Canada, where it is an over-the-counter drug. It needs to be on the site to be numbed for at least an hour, covered by some kind of airtight dressing. I tried using plastic wrap, but it was very hard to get it on my left arm using only my right hand. So I ordered up some Tegaderm dressings, which are like big, clear plastic bandages.

I looked around the Internet and found a good price for Tegaderm at Care Express Products where I ordered the 2 3/8" by 2 3/4"dressings in boxes of 100 for $38.50 (Item no. 1624W). As I had two needles inserted each session, a box lasted through 50 sessions. At three sessions per week, that's more than 15 weeks.

To keep shipping down, I ordered two boxes at a time.

The EMLA is kind of expensive, but the alternative method of having lidocaine injections in each needle site each treatment had a couple of disadvantages. First, although the lidocaine needles were much, much smaller than the dialysis needles, there was still some pain and a bit of stinging involved in the injections. Second, I have been told by a few dialysis health care professionals that using lidocaine injections will shorten the useful life of the access (the enlarged vein or artificial graft used for dialysis needles -- normal-sized veins do not provide a fast enough blood flow).

However, a lidocaine injection does have a couple of advantages: it works immediately, and it is covered by Medicare. (More about Medicare coverage for dialysis treatments at another time. Now, I'll just say that Medicare covers dialysis and kidney transplants regardless of the patient's age.)

I believe there is now some topical lidocaine available over the counter in this country, so check that possibility, too.

My final helpful item is cohesive tape. It's kind of like an athletic bandage, only thinner and it sticks to itself.

As I said before, dialysis needles are pretty big, and consequently when they are taken out, you have to either hold or clamp the needle punctures for at least 10 minutes or so. After that, dialysis staff will put a big wand of guaze on each stick site and tape it firmly down. Then after an hour or so, the patient can remove the guaze. Unfortunately for me, the tape they use to hold down the guaze, and even a substitue of a bandaid, really irritated the sensitive skin of my inner arm. It would start to blister or rash, and then the next dialysis session would be really irritating. (The needles need to be taped down during the treatment session, too.)

I had had a cohesive bandage applied after the first iron infusion I had had before I progressed to needing dialysis, and I wondered where I could get the same thing to use after dialysis. I was told that kind of dressing was sold under the brand name Coban, but that it was expensive. To cover both needle sites, I needed a four-inch bandage, and that would cost $3 or $4 per roll.

A very helpful dialysis technician told me, however, that he knew a patient who ordered a similar product much cheaper at a veterinary supply store. So I went to the Internet again, and found 4-inch cohesive bandages for less than a dollar per role at ShopMedVet.com when purchased in boxes of 18 roles. With shipping, the price goes a little higher, but it is still less than $2 per role, and I found I could reuse each piece I cut or tore off for two or three dialysis sessions. The item number there for this product is OF4BX. They say it can come in any of several colors and you can't choose the color, but unfortunately I never got red or green ones, only flesh colored ones. Maybe because I don't have a DVM after my name, they guess I was using it for myself.

So there are my three big suggestions for making hemodialysis less painful:

1. EMLA or other numbing cream
   
2. Tegaderm dressings to cover the numbing cream, and
   
3. Cohesive bandage if your skin is sensitive to tape or bandaids.
   

Introduction to the Blog

This is a blog about dialysis and other issues concerning kidney failure, or kidney disease.

Kidney disease falls into two classes: chronic and acute. It may sound like acute kidney disease is the worse of the two, but actually chronic disease is worse, since it cannot be cured. This blog is about chronic kidney disease (CKD) and its usual successor, end-stage renal disease (ESRD). ("Renal" is another medical term referring to kidneys and their functioning.)

According to nephrologists (kidney doctors), CKD will eventually lead to such a serious loss of kidney function that something else must be used to accomplish the blood filtering which is the primary function of a healthy kidney. At this point, they change the diagnosis from CKD to ESRD.

There is no cure for ESRD, and left untreated it results a physical decline that ends in death. But there are ways to treat ESRD. One way is for the ESRD patient to get a kidney transplant. The other is to use dialysis, which substitutes some other kind of filter for failing kidneys.

I'll get into much more about these options and about other issues of importance to people with CKD or ESRD and their families.

I'm not a health professional, so if you or a loved one has chronic kidney disease, it is vitally important that you get yourself a nephrologist ASAP.

But I'm writing this to share my experience, as I remember just exactly how scared I was, and how lost, when I knew I would have to start dialysis. And I'll pass along things I've heard from other dialysis patients, and from health care professionals. And I'll list resources I've found helpful.

And I'll try to learn how to use this darned blogging software.