Father's Day: in a Reflective Mode

Enjoying a peaceful Father's Day. No one here but myself. Michael called from his backyard in Santa Fe, enjoying their garden. While we talked he was watching a huge black and yellow butterfly flit about three feet in front of him. It's blazing hot in Dallas today. That butterfly would spontaneously self-combust if it were here. Susan's at the Natural History Museum in New York. Travis is working on his Math dissertation at his apartment in Brooklyn. They're meeting up with friends for dinner somewhere in New York. I'm drinking a beer and flipping between the Open at Pebble Beach, the World Cup and a baseball game.

And thinking about the last couple of weeks.

Heard talk on the radio the other day about how it was 16 years since the big OJ Simpson chase across Los Angeles. I remember that well. We watched it from a New York City hotel room while the family was on a choir trip. It was on that trip that I discovered I had super high blood pressure and PKD began to have a dramatic affect on my life. Up until then I had thought of my life as normal.

I went back and read all my postings on this blog last night and after I got over the many minor edits and the  goofy spacing Google Blogger puts between paragraphs that have to be deleted to make it look halfway decent, I decided I rather liked a lot of the things I said. I really did give short shrift to the time spent on dialysis and I need to work on that. When I've tried to write on dialysis it always turns into informational reporting. Which would be good except that I'm just drawing on information that's already out there on the web. There's a gillion web sites, doctors, nurses, dieticians, handouts and posters that tell why it's a bad idea to eat foods high in potassium and things like that. My writing is at its best when the information comes from personal experience, and that's been difficult.

But what really stood out was the period of denial and uncertainty when I was fighting a tendonitis of the achilles which wouldn't heal because of the aggravated swelling caused by the chronic kidney disease. I limped around in a walking boot for months in a state of constant pain and exhaustion. The future of dialysis and transplant was dark, murky and uncertain.

Now I've been limping for a couple of weeks. It was something of a relief to find out that the cause is a broken bone which has a finite period of healing. The BK Virus is another thing. It's a threat to the graft and the treatment is filled with uncertainty. Treatment is more successful than it used to be, but it's nowhere near 100%.

The combination of the limp and the virus creates a veil of depression and the temptation is to succumb. To some degree I have over the last few days. It shows when I step on the scales in the morning. But to yield to depression is the easy path. I have to remember that I've been living in open ended stoppage time for the last three and a half years. Each setback has to be a path to a new well of strength.

Well, I guess the blog just got personal again.

It's Not a Rejection (But why don't I feel better?)

When I was a salesman, I hated making cold calls. I dreaded rejection. When I was a young man, I hated calling girls for dates. I dreaded rejection. In fact I still don't like making phone calls. Fear of  rejection runs deep.

And now I live in Post-Transplant land and rejection has a whole new meaning.

The subtext of growing up in the 50's and 60's was the over-arching fear of nuclear war. In Post-Transplant land the subtext is fear of graft rejection. The walls of the Transplant Clinic are plastered with the signs of rejection: clammy hands, cold sweat, squeaky voice, stammering... No No NO! Stay focused. Repeat after me, "The signs of graft rejection are: pain in the area of the new organ, slight fever, decreased urine, rapid weight gain. If you notice these symptoms, Call the Clinic!"

Whatever the symptoms, all signs are ultimately confirmed by lab reports which show increased levels of creatinine in the blood. Which means the kidney ain't workin' as good as it should. So that was me, getting my labs back on Tuesday with creatinine level up to 2.2 (Normal is 0.2 to 1.2) The elevated result was confirmed by Thursday's labs.

And that was me, walking into the hospital early Friday morning for a Kidney Biopsy. A small amount of kidney tissue is removed which will tell the nephrologist exactly what's going on in the kidney so the doctor can make the proper diagnosis and prescribe the proper courses of treatment.

The procedure sounds a lot worse than it really is. A long needle with a grabber attachment is inserted into the kidney. It grabs a tissue sample which is removed. A local anesthetic is used to deaden the area. A sonogram is used to guide the procedure. Tension is way worse than the pain. I was alarmed and startled twice. First, when the tech asked for a Spinal Needle. (Yikes! I've heard horror stories about such things.) Second, when the doctor activated the grabber. It was very sudden, very loud and visceral. SNAPCLICK! And then it was over. Very quick and routine. I was not the first kidney biopsy nor the last for the lab today. I think they did four, back to back. All transplanted kidneys. (The photo is from the Columbia University fact sheet kidney biopsy patients.)

Then it was back to my room where I had to stay flat on my back for four hours, or until the blood cleared from my urine. (Bleeding issues are the most frequent and serious complication of the procedure.) I never did show any blood in the urine. By all means, schedule this procedure during World Cup and the US Open, especially if it's at Pebble Beach. Just me and the TV. Laid out with no interruptions except for the occasional nurse. Father's Day should be so good.

Dr. Melton came by late in the afternoon to discuss the findings. I sell wine, he buys wine. I'm always a lot more comfortable when our conversations are on my turf.

First the good news. He doesn't think it's rejection. (Eyes close. I enjoy a small smile while tension flows from my body.)  Reality wakes me up. What's driving the loss of kidney function?

And the bad news. Have you ever heard of BK Virus? Neither had I. Well, it's pretty widespread. 80% of the population has it, but natural resistance is developed at an early age. It was first isolated in the urine of a post-renal transplant patient named B.K. in 1971. The use of immuno-suppressants as anti-rejection medications allows the virus to become active. And there's a special something that allows it to be especially active in renal transplant patients. It's always difficult to read these papers, but it looks like the virus becomes active in a relatively smallish percentage of patients and actually causes renal failure in a smallish percentage of the affected group. The virus can cause scarring of tissue throughout the urinary tract and in the kidney itself and can lead to kidney failure.

Hmm. Sounds like the same number games I encountered when I started learning about PKD. ONLY a smallish percentage of a smallish percentage are chosen. So, not only am I not rejected, I'm also a winner! Only being a winner with PKD and BKV is an extremely dubious distinction.

So, what can they do about BK Virus? Well, the problem is that it's a virus..... Everyone knows you can't treat a virus.

The first step is to reduce the dosage of immuno-suppressants. The goal is to fine tune the dosage level to prevent rejection, but allow the body's natural defenses to work.  Dr. Melton game me instructions and I started with tonight's meds. Frequency of labs will be increased so we can monitor the effect.  There are anti-viral medications that can be used down the line, but they have their own issues. The most desirable goal will be to find a dosage that will keep all factors in balance.

No one said it was easy. The last year of relatively carefree existence sure was sweet!

Fear of Rejection, More than Just a 'No'

Hello again. Seems like life's been real normal lately. The weeks have their routine and seem to slip by ever so quickly. It's been a long time since I went eight months with only 3 doctor visits.

Until a couple of weeks ago. I somehow hurt my foot moving case stacks of wine around the store. After a couple of days of limping through increasing pain I waved the white flag and sought medical attention. The doc at the 'urgent care clinic' noted my history of ESRD and and said she would look closely for a fracture due to the possibility of ESRD related osteoperosis. After the X-ray she said there was nought but contusion, gave me an ankle brace and said to take two tylenol and come back the following week.

Skip forward a couple of weeks to my three month check up at the Transplant Clinic. It was time for my annual bone density scan which showed that my bone density has actually increased over the last year (4% in the hip bones!) So much for notions of osteoperosis. 

The doctor wanted to x-ray the foot to make sure the swelling was injury related and not kidney-related edema and sure enough, there was a small fracture in the first metatarsal. Which didn't come as a surprise since the foot was still painful and extremely resentful of being strapped into a shoe! (In defense of the first doctor, the foot was really swollen and the fracture is tiny which no doubt made it difficult to read the x-ray.)

But of much more serious concern was the elevation of creatinine in the blood. It was up three months ago and mo' up on this visit. Tested twice, with consistent results. (For the record 1.7 in March, 2.2 in June.) A sonogram test this week showed good blood flow through the kidney. There was a thought that I might be slightly dehydrated, so I drank gallons over the next couple of days before labs today. But the results showed no change.

So, tomorrow the fun starts. I check into the outpatient lab for a biopsy of the kidney to see just what's going on. The biopsy is taken with a large needle guided by the light of the sonogram under a local anesthetic. I'll be held for a few hours to make sure there's no bleeding and then be released in the afternoon. The treatment plan will be determined by what the biopsy reveals. Apparently different types of rejection show different types of cell structure. For information (and photos!) follow this link.

So, that's the up-to-the-minute situation. Will post as soon as I know something new!

PKD and 'Fistular' Responsiblity

My fistula was created in my arm by a vascular surgeon about six months before I began dialysis. That's the minimum time needed for the fistula to grow large enough to carry the volume of blood required for dialysis. Mine was a 'baby' and hitting it with a needle was complicated by the fact that my veins run deep in my arms. Whenever a new 'patient tech' had to stick me, it frequently required several sticks and help from the nurses to set the needles so the blood would flow smoothly. 

I did have a complication. The 'aneurysm' was building in two spots and the vein wasn't expanding between them. The flow was poor and the machine couldn't run at the proper speeds. A second 'day' surgery was required. The surgeon did the repair leaving me with two 2" scars running perpendicular to the fistula. Each scar has 8 very neat stitches. Right below the wrist. Very Frankenstein. Very successful. Ease and quality of treatment were greatly improved.

Readers of the blog might remember that my struggles with PKD and Chronic Kidney Failure were largely characterized by a spectacular run of denial. My nephrologist had advised having the fistula surgery over a year and a half before I had it done, but I ignored his advice.

But what if my kidney had failed during this time of denial? Dialysis cannot take place without an access. Needles cannot reach blood veins large enough to handle the flow. Ports are surgically installed under the collar bone that allow permanent access to main trunk arteries. The same ports are used for other therapies requiring the repeated infusions of large amounts of fluid. Chemotherapy is probably the most common. 

So if at any time during that year and a half, my kidney had failed (remember, I was down to one at this point) and I entered the emergency room with acute kidney failure, I would have had to undergo surgery before receiving the life-saving dialysis treatment. I think this path is extremely common. I don't remember seeing any first-time patients at my dialysis clinic who didn't receive their dialysis through a port. 

That's one of the relative blessings of PKD. There is usually plenty of warning. Diagnosis should come long before the need for dialysis. If you have PKD, how did you find out? Have your kidneys failed? How long did you battle PKD before it won out?

My diagnosis came during an episode of kidney stones ten years before my first kidney was removed and twenty years before my transplant. During that time my blood pressure skyrocketed, largely due to PKD. An acute bout with flank pain led to the first nephrectomy. Pressure from the large size of the kidney cut off urine flow in my ureter causing renal failure. A stent restored urine flow and kidney function. All these episodes were clues, but I still didn't believe my kidney's would fail. There's a lesson here....

Acute flank and abdominal pain took my son by surprise a while back. He blamed a famous fast food chain's new Angus burger, but the big surprise came from the emergency room doctor, "Have you ever heard of Polycystic Kidney Disease?" 

He is still young and hopefully has many years before the possibilities of renal failure, dialysis and transplant complicate his life. But he can be under long term care. Routine blood work will let him and his doctors know how his kidneys are functioning and let him know when it's time to start taking things more seriously.

I can only hope that he's more responsible about managing his disease than I was.

My Fistula, My Constant Reminder

My fistula is my constant reminder that transplant is treatment, not a cure.

It's still alive to the touch and buzzes with the flow of blood. The technical term is the "thrill." Even though a year and a half have passed since my last dialysis, my fistula never lets me forget.  It started aching a while back and seemed to grow weak, but renewed flexing and exercising the forearm have brought it back and I think it's even stronger now than it was. I can feel its presence almost up to my elbow. In quiet moments, I find myself running my fingers over the vein, feeling life pulsing through my arm. A touch-point.

The fistula is the access for dialysis needles, created by joining a high pressure artery and a low pressure vein. The veins are chosen for their relative pressure and proximity to the surface to facilitate ease of the sticks. Mine is in my left fore-arm just above (below?) the wrist. It originally diverted about 50% of the blood going to my hand and turned it right around back to the heart. Like in Star-Trek when they looped an orbit around the sun to pickup speed, it's designed to carry huge volumes of traffic at high-speeds. During treatments, the needles were placed in different locations over the 6" span. The main access points are raised over the normal surface of the arm and are visibly prominent. The aneurysms of most fistulas are much larger than mine. My veins run deep in my arm which made life difficult when needles were placed by someone not familiar with my access.

A rejection episode could begin tomorrow, next week, next month or next year.  Rejections are usually treated by adjustments to medications made in a hospital under close observation. But if the graft kidney should fail, dialysis is always there as a life-saving alternative.

The darned thing can keep me awake at night if the fistula is in contact with a pillow or the mattress. The pulse is so strong that it resonates through the bedding and vibrates in my ear. Loud and demanding. Not unlike a jackhammer or a bad hangover.

But, I adjust. It's my lifeline.

Hello Blog. It's Me Again...

Hello Blog, it's me again. Do you remember me?

It's been a while. I've read my last post a number of times and each time I'm surprised at how final it seems. It wasn't really my intention, but the muse has been difficult to find. The story reached premature catharthis last fall with my involvement in the National Health Care Debate (CNN did call Sunday afternoon when it looked like the vote was going through. They were tentatively going back to people interviewed in the fall for reaction, but decided to go in a different direction.) And of course the story reached its culmination and emotional peak at the first anniversary of my transplant.

That's when the blog started drifting. I tried going back to the story of dialysis, but that was becoming a series of lectures on dialysis and that's not how I want the blog to read.

Today is a cool, damp spring morning in Dallas. We had 5" of snow Sunday, two warm, sunny, glorious Spring days and then a day of intense thunderstorms. I just returned from a brisk walk which followed a session of tai-chi in the ump-teenth time I have tried to resume regular exercise. I really need to now. I've put on too much weight and my blood pressure is rising. Two things that really mess up kidneys. (At least PKD is no longer a concern!)

Since the anniversary of the transplant, I have really relaxed and have just tried to enjoy a normal life. I feel great, my energy is good. I can work long days without getting exhausted. I notice the difference singing in the choir at church. I can reach both higher and lower notes and sing with more volume and intensity. Not always a good thing, I have noticed a higher correlation between my mistakes and the stoppage of rehearsal! I didn't worry too much about weight during the fall and put on a few pounds. Then the battery on my bathroom scale died in the middle of December and I put on more than a few pounds!

While on my walk this morning my thoughts went back to the one time in my life when I really paid attention to exercise and diet and that was during dialysis. The secret to not being devasted by the treatments is to put on as little weight as possible between treatments. It's difficult because the kidneys are not removing excess fluid and that's especially true if both kidneys have been remvoed! But the less weight ones gains, the less fluid has to be removed during dialysis. Believe me, the recovery from treatment is much easier!

I became obsessive about exercise, weight, and blood pressure. I kept a daily spreadsheet which tracked everything, down to daily, weekly  and overall percentages of changes. I would walk as often as possible, increasing distances and even starting running. If you've known me all my life, you would realize how radical this behavior was!

When I started dialysis, I needed to lose 15-20 pounds to be considered for transplant. I had lost 35 by the time of transplant and was in the best physical condition of my mature life. Except for the fact that I had no kidneys and without dialysis I would have been dead!

So need to return to the good life. Diet does not need to be as strict, but it needs to be controlled. Exercise needs to happen. And now, after entering my vitals on my spread sheet, a session of tai-chi and a brisk walk, it's time for a little breakfast, a shower and off to work!

Community and Support

I was in a seminar a couple of weeks ago on utilizing blogs and social networking as tools for selling wine. On the panel of experts was one of the first (and still one of the best) winebloggers Alder Yarrow who writes Vinography: A Wine Blog. The question was how can you tell whether the blog is 'for real'. He said to watch out if the first sentence is "I'm sorry I haven't posted recently but...."

OOPS!! 

A little guilty here!

I did want to thank Sean and Amy for their kind comments after my last posting. It made me feel that the blog was worthwhile in the greater world, which is not something I expected when I started writing.

I started writing for myself. I was thinking about PKD and the miracles of dialysis and tranplant constantly and needed a personal outlet. The telling turned out to be struggle, untangling the tangled time line of memories, looking through insurance records and even the boys' graduation diplomas to confim dates.

I had no connection, no support throughout the early years of the onset of PKD. That was wayback before the discovery of the Blogo-sphere and the Internet had little to offer other than many pages with the same basic information. I gained ESRD support and connection through my dialysis community that gathered every Monday-Wednesday-Friday at 5 in the morning. While we visited some, we mainly napped. The Facebook connection that Amy had made while I was receiving my transplant was the first contact I had ever had with someone else who was struggling with PKD. 

And so, through 'social networking' our little community has expanded. 

I thank everyone who is part of it for sharing my experience and above all, I thank you for sharing yours.

Love to you all.