Thoughts While Testing for Transplant

3:30 AM - awake again.  :)

It's been quite the journey.  I have Polycystic Kidney Disease (PKD), diagnosed a million years ago, when I was 28.  I started transplant testing seven years ago, started dialysis six and a half years ago, went through annual bouts of testing, and finally have reached this point, today.

I have spent the last two weeks having several tests, including an MRI of my brain and neck; endoscopy, ultrasound of my stomach and all the various organs.  I will have two more this week, a cystoscopy and a stress echo.

I have kind of dreaded these tests.  For the past six plus years, there have been many reasons to put me on hold on the transplant list.  (They call it "inactive").  And every time I go through a test, I wonder if THIS is the one that will show something that will cause the beady eyes at the transplant center to put on the brakes.  I mean, I have been steamrolling down the track the last year, roaring along towards my goal of a kidney transplant.  I had several fund raisers this last summer; several individual donors to my cause.  My thank you list is longer than my Christmas list and more than half of my Christmas list are not on my thank you list.  But I still am composing an announcement (It's a Kidney!!!) that will include both lists and people that aren't on either list.  My neighbors, my pharmacist, my nephrologist, my dialysis center, about ten other doctors I have met along the way, people walking by, people standing in the line at Albertson's, strangers.

The hospital where the transplant center is located has this nifty new records system, called Epic.  All tests results go to it and the patient gets an email whenever a test result shows up.  So, the test results are starting to come in.  Blood work on weird things like clotting abilities, antigens - stuff I have to use a medical dictionary to decipher.  Saturday night the results came back from my endoscopy.  I have the beginnings of Barrett's Esophagus - a potentially dangerous disease that is pre-cancerous.

Whoa!  My eyes bugged out and my hand clutched my throat (probably trying to feel the frayed, scarred lining of my esophagus from all those nights of scorching acid reflux attacks).  (This is directly related to my polycystic kidneys growing so huge and pushing my stomach up against my esophagus.)

I started to panic. Mechanic Man said not to worry.  The surgeon said not to worry.  Today my nephrologist said not to worry.

But that's me.  Worry is my middle name.  I just can't seem to give my worries over.  I can't release them.  So, I lay awake at night and don't sleep.  Worrying that THIS will be the reason to become "inactive".  Now, when I am days away from getting a transplant. 

My Left Kidney

After reading several stories recently about individuals on dialysis and their different methods of seeking a kidney transplant, I have decided to join the growing crowd.  So I am modifying my blog, which I started as a series of stories about my kids when they were little.  Then, over the last three years, my blog has drifted to focus entirely on me.  And my kidneys.

I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney.  Eventually, I had both kidneys removed because they were so large (18 pounds total).

I have been on dialysis for three and a half years, starting in September of 2009.  I lost my job as a result two months later.  Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications.  It's a rollercoaster.  I will have a couple weeks, where everything is just right.  And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash.  Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session.  And finally, again, I'll reach a point where I think, this is just right.  But Murphy's Law prevails.  And none of us (my seatmates) is exempt.

So - this blog is slightly revamped now.  We'll see how this goes.

Must be Love

I was so ticked at my brother-in-law when he announced he was getting counseling because of my sister’s kidney disease, subsequent surgeries, and her transplant. I was flabbergasted that he would need counseling for something not happening to him. I wanted to scream at him, “but it’s US, it’s US that have this disease. Not you! How dare you!” That was ten years ago.

Then last night I saw through Mechanic Man’s eyes and I kind of got knocked in the head with the realization that what I am going through is impacting him as well. I get support from readers like you; friends in two groups – my diner’s group of friends, and the friends I have made in the Red Hats, and lately, especially, my friends through Huckleberries and Community Comment. But Mechanic Man has no support group, other than me.

Last night we were discussing my various options, all of which are the Lessor of another Evil, just can’t decide which is the least Evil. He’s petty mellow, Mechanic Man. But his eyes grew darker and more brooding. “I’m so mad!” he said. “It makes me so mad! I feel like someone is pinching my head till it pops!” And he wasn’t mad at me. He was mad at what was happening to me. He was mad because he couldn’t fix it.

And then I understood what my brother-in-law was going through.

So this is love.
.

Attitude Schmattitude

It really is all in the attitude. How you look at things reflects back to you and “becomes.” It’s like what The Secret tells you – that you attract what you think about.

See, I’ve been going through a whole lot of soul searching and introspection about my progressing illness with kidney disease.

Now – I am a strong believer in positive thinking and in the tenants of The Secret. But then I get all muddled up with 1) thinking positive thoughts and 2) being realistic about what is happening to me. So – if I think about my kidney disease and my failing kidneys and start visualizing me on dialysis and then go further into the type of dialysis (tube in stomach, solution feeds through at night for eight hours) or (surgically installed fistula (extra strong vein) in my arm and going to a center every other day for four hours a day), then according to The Secret I will fulfill my “wish” and be on one of those two types of dialysis.

If I DON’T think about that and visualize me staying fit and healthy just like I am now on less than 10% kidney function (which is hardly noticeable at all!), then am I sticking my head in the sand and not being realistic???

I’m damned if I do and damned if I don’t. Oh, what to do, what to do, what to do.

I’ve got little tapes in my head of Dad’s experience on dialysis (horrible at best), Mom’s viewpoint of Dad’s dialysis (worse than horrible and probably why it WAS horrible), my sister’s experience of passing on dialysis and going directly into a living donor kidney (not great experience if you count the bi-monthly trips to the hospital because of this infection and that infection, losing her house because she couldn’t afford the anti-rejection drugs after the three-year Medicare period was done for), and then my brother’s experience of both dialysis and cadaver kidney transplant (both successful – the dialysis being an annoying inconvenience and dealing with impersonal stoic staff and the continuous, never-ending, always going on, needles.

I’ve been playing these tapes over and over repeatedly (too much) in the last six weeks. I have dreaded dialysis because of my Dad’s experience and I’ve worried about a kidney transplant because of my sister’s experience.

Then I spent the day with my brother on Sunday. What a difference a positive person makes!!

It’s in the attitude. Always. It goes back to that very simple concept – attitude. As my sister-in-law said, dialysis is just another little thing you do in your life, like getting up, brushing your teeth, eating breakfast, hooking up to dialysis, going to work, relaxing and watching TV. It just slips in there and becomes a routine deal. For sure, not a small deal but not a BIG deal either. And one day, you will get “the call” and a new kidney and it will be a perfect match because I’m way more like my brother than I am like my Dad or my sister. And I especially am not like my mother, who seemed to drill into all of us the doom and gloom and death-to-all attitude.

I can do this. I just have to burn those tapes.

.

Ten Sucks

I started the week out so well, with my Ten Things About Monday

And then Tuesday came and I thought I would do Ten things About Tuesday, but the first thing I did was see the Kidney Transplant Center in the morning and that kind of got me stuck on the number “ten.”

So, Ten Things Tuesday went like this:

Ten – the number of my blood count, which has improved from 7, but would be best at 12

Ten – the percentage of my kidney function.

Ten – the length in inches of my kidneys. Yeah – read that again. Ten inches. Let’s see. I’m 5’2” tall; that’s just under 1/6th of my entire body.

You know what? I really don’t like the number ten. It’s too blunt and short. Its numeric form is a silly dinky “one” followed by a zipless “zero”. 10. Nope don’t like 10.

I think I’m not going to do 10 list items anymore.

For more on this delirious subject, http://www.spokesman.com/blogs/commcomm/2009/jul/30/calling-all-organ-donors/
.

Kidney Update #2

Here's my sad soppy saga. I am starting to go through tests to get on a transplant list. (no cancer wanted - if I have cancer, they'll just throw me away). Anyway - went to see the kidney doctor today (saw the dentist last Thursday and this last Monday for what can only be described as roto rooter of the gums, with anesthesia and nitrous). So I'm already kind of whacked out of shape.

Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.

Are your eyes falling out of your head yet?

So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.

I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.

I'm beginning to think I'm SICK.

I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?

.

Attack of the Killer Kidney

I've been KO'd by a little kidney. Well, not so little – probably huge. Just what you wanted to read about over lunch: my bulging, growing, cyst-filling kidney(s).

I have Polycystic Kidney Disease, which is the most common inherited disease in the world (beating out diabetes!) and the least known about.

So Friday I woke up feeling like one of those commercials for Nyquil – tired, achy all over, sneezing, fever, backache, whopping headache, and nausea. I know you empathize with me.

I went to work anyway and then had to turn right back around and head for urgent care. Three hours waiting, I kid you not, and I headed to the pharmacy for antibiotics, pain killers, packs of Jell-O, and home and straight to bed. I mean, my significant other had wind burns as I passed him in his comfy easy chair, NOT working. (I'm the breadwinner in this family.) Seriously, I was hoping the doc would say, "You have a really bad and very contagious cold – go home, go to bed, stay off your feet." But, nooooooo.

The last time I had a kidney infection, May 22, 2002 (you don't forget these things), I had a CAT scan. The assistant fussed around with me to get me just right and then started this thing that can only be described as a metal cylinder that looks like the back end of a jet – and it will confirm this vision once the engine starts and I mean – you think you are going to take off into space. It's a huge rumbling spinning sound like a whole bunch of loose ball bearings are charging around and around inside that tube.

I was laying there thinking "be an appendix attack. be an appendix attack. be an appendix attack." But when the assistant came out, her eyes were huge, huge pools in saucers; "Wow, you have really HUGE kidneys." They are NOT supposed to tell the patient that. The radiologist himself is supposed to tell you that. Not the 19-year-old, gum chewing, zit-faced KID.

Now here I am again, waiting for the diagnosis of (cross your fingers), a COLD.

Nope. I had a kidney infection.

See, I hate the word kidney infection because it means that my kidneys are getting attacked again and they just don't need any more pressure from the outside world. They are deteriorating just fine all by themselves. This just adds salt to the wound – oh, but I can't have salt. Just in time for the three-day Labor Day weekend. . . . . . . . . . woohoo.

Now, I'd rather give birth than have a kidney infection. (I've heard the same about kidney stones, too.)

The thing is, you see, I pride myself on my happy attitude. I'm up! I'm positive! I'm cheerful! I'm always going forward! And here I am flat on my back with not even enough energy to flick the power button on the computer, let alone SIT there and try to think of something to write and my fingers and my brain are NOT communicating with each other at all. I'd just as easily hit the delete key as the save key and not know the difference. Maybe I'll have an already-made cup of Jell-O.

It's not that I like to dwell on my disease. We all have some cross to bear. I just don't like to go on and on about it. I like to think that my attitude, my positive thinking, my happy thoughts will slow the decline. Most people with PKD end up on dialysis or have a transplant. I should be very fortunate (and lucky) to just go along as I am now with the occasional kidney infection and sometimes the [very painful] explosion of small blood-filled cysts bursting inside my kidney. I tell myself that as long as I am keeping a good look on things, keeping a positive attitude, then these nasty little interruptions too shall pass into oblivion and I can go along like everyone else.

Still, when it knocks you out, you lie there in bed thinking, gee, could it happen to me? Will I have to go on dialysis? Will I have to have a transplant?

Well, I'm back at work – still climbing up the wall of feeling good. And back to my positive attitude. I will not be ruled by my body today.

.

Transplants, Waiting Periods, Insurance Gods, O My

Dying for a transplant
John Stucke
Staff writer
March 26, 2008

Fred Watley is missing his chance for a liver transplant.

A new organ may have helped the 59-year-old substance abuse counselor steer more teens away from drugs and booze; may have helped him raise his 10-year-old son into a young man; may have helped him grow old with LiAnne, his wife of 11 years. . . .

I was dismayed when I read this article in the Spokesman Wednesday morning. The intertwining of transplants and health insurance coverage is a sticky subject. It is beyond comprehension that the government would support waiting periods for insurance companies on transplants. I can hear their little wheels turning: "gee, if we have a waiting period of six months, the chances are good the patient will die before we have to fork money out for a transplant."

Not only do potential transplant recipients have to go through their insurance company's waiting period, then if they are fortunate enough to get a match with a new organ, they have to go through the surgery, and once home, they have to jump through the Medicare hoops for post-transplant care which includes the very expensive anti-rejection drugs a transplant recipient must take for the rest of his or her life. The catch here is that Medicare will cover an organ transplant for only three years – not for the lifetime of the organ recipient. Again, the governmental mumblings can be heard, saying, "well, we only expect the transplant recipient to live an additional three years, once they have received the new organ. Then they die." So the recipient finds themselves in a position three years after having a successful transplant of paying $3,000 to $5,000 a month for the drugs they must take to keep their organ viable.

It's a matter of life and death. With a transplant, Mr. Watley would have a chance of living 20 years or more. (The down side of transplants is that the new organ will start to fade out after 20 years.) Now he isn't even going to make the six month waiting period.

I have a familial kidney disease, Polycystic Kidney Disease (PKD), which is the most common genetic disease even above diabetes, however the public is much more aware of diabetes than PKD. April is Organ Donor Month. We are hearing ads all the time to encourage people to list themselves as organ donors on their driver's license. Just recently we read about a customer at a Starbuck's in Seattle getting a new kidney from her barrister. Her disease: Polycystic Kidney Disease.

My sister had a transplant eight years ago from a live donor; my brother had a transplant two years ago from a person who had an organ donor card. Both are alive and active and productive. Both were "lucky" in that they lived through the waiting period. My sister was let go from her job (ironically in a transplant center in Seattle) because she was out sick a lot. The problem is that transplant recipients not only have to take 10-20 pills every day to keep from rejecting their new organ, but their built-in immunity is wiped out and they are susceptible to anyone's common cold or flu or other contagious disease and it negatively impacts the organ recipient. She went on Medicare but only received three years of coverage. Being well under 65, she couldn't qualify for Medicaid coverage until her and her husband's income was down to a minimum ($40,000 for a married couple, $2,000 for a single person). My brother is self employed while his wife has excellent insurance coverage for the two of them – so he has a double-sided "good luck" coin: he has insurance through his wife, and, he works alone so he isn't bombarded by sniffles, coughs, wheezes and the cubicle neighbor who has to confide to anyone in breathing-in distance their blow-by-blow latest crud.

As for me, I am living on the hope that I am "status quo" and that I can live to old, old age with no problems with this disease. My alternative is dialysis – even Mr. Watley hasn't had that option. Or a transplant.

Have a spare kidney??????

Polycystic Kidney Disease

Polycystic Kidney Disease (PKD) is actually very common but hardly anyone knows about it. It is more common than diabetes. It affects 500,000 people in the United States and is a genetic disease that will affect whole families for generations. My Dad and his brother and sister all died from it. Their mother died from it. I have a brother and sister, as well as me, diagnosed with PKD. Both my siblings have had transplants, my sister from a live donor, my brother from a cadaver. Both have been very successful, particularly for my brother.

I urge you to consider being an organ donor. Having a transplant is a life saver!