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!

Back to Work: Life Begins with Dialaysis

So on Thursday, November 9, 2006 I went back to work after three days of hospital supervised dialysis. I felt great, energy was good and the dark clouds of fear surrounding the great unknown had been dispersed. My left arm around the fistula was a mess, though. It was swollen, purple and had over 20 holes where the nurses had been unable to hit the mainline.

Friday was the day of my first appointment at the dialysis center. I expected to go in, dialyze for a few hours and then head in to work. As ususual, my expectations were ill informed and a little naive! A long meeting with the Director accompanied by reams of forms and releases was followed by a long exam by the center's nephrologist and then more meetings with the dietician and social worker.

Finally in the early afternoon I was shown into the lab. The patient technician's and shift nurses were super friendly and supportive and would become good friends over the next two years. The nephrologist had shown concern over my fistula and Fe, the queen of the needles was brought over to place the needles and, working slowly and carefully, she slipped them right in on the first try. My chair was next to a window and I basked in the warm late afternoon sun. I did have some cramping toward the end of the treatment, but got in the full four hours.

By the end of the treatment, I had been at the center 6 hours, had not had lunch and I was exhausted. I called the store and said, "See ya' tomorrow" and headed home.

Dialysis: The Third Day

The third and last day of hospital supervised dialysis began three years ago with a very sore and swollen left arm. My veins run deep and the fistula was not fully formed. My forearm resembled a pincushion from all the failed attempts to stick the needles into the fistula. (The needles were approximately the size of a four penny nail!)

I was wheeled into the lab early in the morning and the sticking was no easier. The head nurse campaigned with my nephrologist to install a catheter, that there would be no way the technicians at the dialysis centers would be able to hit the vein. Dr. Rinner examined my arm, squeezed it and said the fistula felt just fine. He looked at the direction she had been sticking and suggested that she angle to the right. She hit it right away. This would be a continuing theme over the next two years. I got a full treatment and it went smoothly.

So other than needle problems, my first days of dialysis had gone extremely well. I was delighted to be feeling so much better. In fact, I was wondering why I had been so resistant for so long. Of course my life was severely changed. I had spent the days in the hospital reading reams of information on the need to restrict fluid intake (a major handicap in the wine business!) and severe dietary restrictions. And I could never stray too far from my new friend for life the dialysis machine.


Now we can start the tales of miscommunication and confusion that seems to be part of the American standard of health care. I was through with three successful days of dialysis and was ready for discharge. Except that the social worker who was supposed to have been working on arrangements with a dialysis center for my future treatments didn't get started until the last minute. So instead of being discharged, I sat in my room and waited, incurring another day's charge on the hospital bill.

Finally she came in with arrangements and schedules and I called Susan to come pick me up. Then the social worker called back and said my insurance wouldn't cover the treatment. I told her that was wrong, I had their approval letter with me. It turned out that she made arrangements with a center that is not on my insurance's approved list. Nice. She went back to work. Susan showed up and we both had a warm nap in the sunlit room.

Eventually the social worker called and asked if a Monday-Wednesday-Friday schedule at 7am would be acceptable. I said that would be perfect. Which it was! The center was about a mile from the house. I would be able to keep working full time by working closing shifts  on Monday and Friday. I could take my day off on Wednesday and be able to go to choir rehearsal on Wednesday evenings. My first appointment at the dialysis center would be the next Friday at 11 in the morning.