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.

Transplant Convergence Continues

The January 2010 transplant continues as three people I have 'met' since beginning to blog on PKD are receiving living donor transplants this month. 

Sean Hoefling (Living with PKD) had his transplant early in January and is doing great and already going back to work. He's had some issues with Potassium levels but that seems to be working out. Diet is way less restrictive than with dialysis, but it is still very important. The thinking is, if it is difficult for the kidney to process or maintain proper levels, then help the kidney out by watching what you eat.

His brother Bruce (pkd sucks) is not having such an easy go. There were unusual complications with blood flow to the kidney which required a second surgery, a longer stay in ICU and now 'sleepy kidney syndrome'. He is producing urine, but they are waiting for the creatinine to start going down. Bruce just doesn't seem to go down the easiest path! Everything, from PKD to dialysis and now to transplant has been extremely difficult. As difficult as my path seemed, I almost feel guilty about how easy it was compared to what Bruce, Amy and their family has been through.

Neal Branson ("...in sickness and in health...") and Candy (his donor and co-worker) are in surgery this morning. A local news outlet did a great story which you can see here (Deputy's Kidney Fight). The surguries should be starting soon. 

These are all miracles of people donating living parts of their flesh, blood and bodies to give another the gift of life. Please keep them all in your prayers. 

Dialysis: Learning to Adjust

So it turned out that adjusting to the reality of dialysis was the easiest adjustment to make. The reality of dialysis involves more than just adapting life to a new schedule. It involves a total surrender of lifestyle to the demands of treatment. Weight control, fluid intake restrictions, diet restrictions are just a few of the new issues that dominate life with dialysis. The driving goal in life becomes getting good lab results. 

The most important issue is managing weight gain between treatments. A treatment removes a minimum of 1.8 kilograms of fluid waste and a maximum of 6.0 kilograms. The waste includes excess water that is normally removed by the kidneys along with various waste materials produced in the body. Each patient is assigned at 'dry' weight and the goal of each treatment is to remove the necessary amount of fluid to reach that weight.

So the first thing a patient does when called to the treatment area is step on a scale and relay the weight to the patient care technician who then subtracts the 'dry' weight from the actual weight. The difference is the amount of fluid to be removed. 

In my case, I'm a big guy. My dry weight when I started dialysis was 115 kg. If I weighed 120 kg. when I arrived, the treatment would have to remove 5 kg. That's 11 pounds for you non-metric folks! AND that's a LOT of fluid to pull out of a body! The results of taking off that much fluid are headaches, nausea, cramping and loss of blood pressure, any one of which can cause the machine to be set on minimum, which means that the job of blood cleaning is not getting done.

Thus the most important goal between treatments is weight control. The easiest way to put on weight if your kidneys aren't working is to consume fluid, so fluid intake should be restricted to one quart per day, 32 ounces, 4 - 8 oz glasses of water. I repeat, restricted to one quart combined of any liquid:  water, tea, coffee, gravy, soup, ice cream, hot sauce, popsicles, not to mention beer, which has so many other things that cause problems with dialysis that it's totally out of the question. Well, out of the question if effective dialysis treatments that don't cause illness are the goal.

Unfortunately, the amount of food consumed impacts weight gain as well. (Is that really true??? DAMN!!!) That leads to the question of which foods contribute to more successful treatments and which ones don't. Now the path leads to chemistry of nutrition and things really get complicated.

And that's a story for another night.

Transplant Convergence

Sean Hoefling, the first of three online friends scheduled for donor transplants received his transplant today! All went well, the donor is doing great and Sean is resting in ICU. Jeremy, his donor, came to Nashville prior to the surgeries and spent time with the Hoeflings over Christmas.

Sean's brother Bruce is scheduled for January 14 and Neil Branson is confirmed for January 26. We have been connected through blogs and Facebook for the last several months and I can't tell you how exciting it is to see receive treatment through transplant after their struggles with PKD.

I apologize for the lack of posts during the last few weeks. It's a demanding task keeping folks supplied with enough beverage to celebrate the holidays. Long days, no days off, and then I have to celebrate with my family in the precious time not spent on the job.

When life calms down, I'll begin to document the ups and downs of my experience with dialysis and the transplant application process.

Happy New Year to All!

Dialysis: Starting a New Routine

I had finally leaped the big hurdle and started dialysis. After years of denial, dread, and refusal to look at the inevitable future, the treatments had started and for the first time in years, I actually felt better. Even after just four treatments, my creatinine was lower than it had been ten years earlier, when I had my first PKD crisis and my left kidney had been removed.

(Creatinine)

My second week of dialysis started with the same schedule I would keep for the next two years. I was lucky to get on the first shift, so my scheduled treatment was at 6 am. My days were Monday, Wednesday and Friday. I am the director of the wine department of one the largest wine and liquor stores in the DFW area, so I was able to tailor my work schedule to my dialysis schedule. Wednesday's would be my day off, with a choir practice in the evening. I would go to work on Monday's and Friday's after dialysis (and some recovery time) work a closing shift. It was really quite a busy schedule! 45 hours of work, 15 hours at the dialysis center, and 4 hours of choir at church.

But I proceeded to keep the same strategy that I used to deal with kidney disease. If I would just ignore the pain and keep on keeping on, everything would work out in the end. And so far I guess it has!