Denny

Denny's Health Update

As most of you know, I received news the other day that I had passed the final review in my transplant evaluation. I have mixed feelings about this new development. I do feel thankful that I now have the option to transplant and may one day be able leave the rigorous dialysis treatments behind me. However, I’m going into this with my eyes wide open and realistic about the consequences of another transplant.

The 2 major issues I’m concerned about are the Lymphoma returning once I get back on the immune suppressing drugs, and my aortic dissection not being able to withstand the surgery.

The Oncology team (made up of 3 oncologists) believe that as soon as I get back on the immune suppressing drugs, the Lymphoma will reappear. They believe that the chance of reoccurrence is 100%. Unfortunately they also let me know that the fatality rate is 100% as well. They have no dialysis/transplant patients who developed a reoccurrence of cancer and survived.

However, my Nephrologist, Dr. H. believes that I only have a 1% chance of reoccurrence, since this transplant related lymphoma is so rare to begin with. She did reaffirm the fact that she too does not have any dialysis/transplant patients who survived the reoccurrence of cancer.

So, these are the statistics:

a. Oncologist = 100% chance will have reoccurrence of lymphoma after transplant, 100% mortality rate. (not so good, eh?)

b. Dr. H = 1% chance will have reoccurrence of Lymphoma after transplant, 100% mortality rate.

c. Denise = 100% need to eat a big yummy Fat Burger and I”ll feel much better, and 100% that thinking about all this will drive me crazy.

What may be the best case scenario, is that if I in fact do develop the lymphoma again, it will be caught early and they can simply take me off the immune suppressing drugs, the cancer disappears, I then lose the transplant, but go back on dialysis. At least, if this happens, I’ll survive.

The second issue is my aortic dissection.

With my aortic vessel compromised and weakened already, it may not withstand the stress of the surgery. The surgeon must be skilled enough not to agitate or injure my aortic vessel during the actual transplant surgery. Aortic dissections which tear open, are always fatal. A few years ago when my aorta tore and dissected, it did not tear open, which is why I’m still breathing today. However, it is still in the process of healing and if the surgeon is not skilled enough, he/she may injury my aortic dissection and a fatal tear or bleed may occur.

These are basically the 2 most important issues regarding my potential transplant. Of course, neither I can do anything about. Being on the Transplant Waiting List does do one very important thing for me. It provides me with real hope. To think I may have to spend the rest of my life on dialysis, without the hope of transplanting, is like being in the desert, alone, with no water, no shelter, and no mirage in sight. At least now I have an oasis as my companion, something I can keep my sights on, while I’m trudging through the long valley and dunes of sand. Even if all I can do with this oasis is look upon it, it is enough to inspire me to keep putting one foot in front of the other.

P.S. My vascular surgeon, Dr. R, will be removing that large, bulging vessel on my left arm and replacing it with a small, narrow graft. Surgery is scheduled for May 2, 2008!!! I can't wait to get that removed. It will relieve the pressure on my heart, and get rid of the large deformity on my arm.

Since I last wrote in July of 2007, not much has happened. Thank goodness. Its been fairly quiet and my health has maintained some sense of stability. I've been able to maintain a nice consistency regarding my health and well being. The only recent hiccup was a little patch job on my right fistula last week. To unblock the three blockages on my dialysis line, Dr. R was able to go in and patch the area with a graft and get the blood flowing again through those area. If you listen to a blocked vessel with a stethoscope, it makes a sound like that high pitched straining sound similar to when the car won't start. That "reee reeee reee" sound when you've turned the key in the ignition, pumped the accelerator, and the battery won't produce a spark. That's what my arm sounded like. Once Dr. R got the blocks opened, you can now hear a loud "whooshing" sound, like a dam has opened its flood gates.

With this new improvement, I'll be using my right fistula soon for my dialysis treatments. And I'll be able to get really good toxin clearance that will improve my energy and health.

Photo of arm 4 days after Fistula patch surgery.

I'm still awaiting the UCDavis Med Center's Transplant Team to come to a decision regarding my eligibility to transplant. I have one more test to do, a PET scan, to scan for cancer, and then I'll be all finished. After they review my last PET scan, then they'll let me know if I've passed their qualifications or not.

I can go on and on about how weird and frustrating it is to allow a group of doctors, who don't even know what I look like, or even know my first name, are to make a decision that would change the course of my life. It boggles the mind to think these people have the power to pick who lives and who dies. Its almost ridiculous.

I'll keep this page updated on how the progress goes. In a few weeks, after the PET scan is finished, and the review board is finished contemplating my fate, I'll post the decision on this webpage. Even if they do reject me, I may still have a chance to transplant in San Francisco. We'll see, but that's still a few steps ahead of where I am now. Thanks for all your prayers, and for all my friends and loved ones who keep me going. I appreciate your friendship and the time we spend together.

Let's see now......I've started up the newsletter again, and so I'll update you on my health. The last thing I wrote about was being accepted onto the Transplant waiting list for UCDavis Med center. It was very good news. I've been doing dialysis for 3 years now, and in September of 2007 I'll be eligible to transplant. Dr. H has advised me to wait about another year, that would give me some extra time and hopefully lower the probability of developing lymphoma again after I transplant.

So, for the past 6 months, I've just been plugging along. Going to hemo dialysis 3 times a week, and doing what I can to stay strong and ready to transplant. I have lost considerable amount of weight, maybe like 15lbs or so. I look thin, and definitely I look sickly. But, I'm still making it through the days. I've started a tai chi class, and that has helped considerably.

I got a new fistula put in my right arm, so they are dialyzing me from the right arm now, and have stopped using the fistula on my left arm. Dialysis is going well, I'm adjusting to it better each day. Some days are good, some not so good, but I still just put one foot in front of the other and do what I can to show up for my own life.

I've got my little projects to keep my preoccupied during the day, like my tobacco growing project, and my websites, and my comic book collection that I've started up again (I just bought 1,000 comics from Ebay!!!), my cigar hobby, and I've done a lot of interior decorating (if you want to call it that), so my house is move livable. I live full time at my own residence now, and so I've had to take the time to make it "home" again.

I've got a lot of new furniture, a canopy bed, a pretty cool cigar parlour/juice bar with a mini refrigerator as a juice cooler, and all of my cigar boxes and humidors on display. I've got my computer room all set up too, so I can just hang out in there and bang out stuff on my computer and surf Ebay for deals on things I don't really need. I set up one of my bedrooms as sort of part of my tobacco factory. Its got my tobacco seedlings growing by the window, and a table to work on for cigar rolling, and processing the tobacco leaves as they ferment. I made my own fermentation box out of Styrofoam and used a light bulb as the heating source. By fermenting the tobacco leaves you remove the harsh ingredients and it makes for a smoother smoke. When the leaves are done fermenting, I'll try to actually roll them into cigars. I'm sure they'll look pretty lame, but with a little practice I think I can eventually roll a pretty good one.

The dialysis staff is about the same. My nurse, S.J. is still doing a great job of keeping me alive and healthy and well. My favorite techs and dialysis nurses are still there too, Sarah, Marlon, L.V., Nancy, Diane........etc.. Doing a great job of keeping me healthy. I enjoy getting to know them as each day passes by. And of course, Dr. H. is still doing a bang up job!!! She's still as spunky and brilliant as ever, keeping her patients under her wings and infusing us with her passionate and healing energy.

If I learned one thing about Dr. H, I learned that she will never give up on a patient, even if you've given up on yourself. And as long as she has a living breath in her body, she will do everything within her power to keep you alive and well.

A few weeks ago, I looked back, and realized that almost all of my friends at the dialysis clinic have passed on. This hit me hard. In 3 years, almost all of them are gone. I honestly thought it would take much longer then that. And at times, I took for granted their presence, believing I'd see them again in a couple of days. I am grateful, now, for the friends that are still here, and fighting with immeasurable courage to continue this path.

Well, that's it for now. I'll update again in a little while. Thanks!!

(6 month break: December 2006 - July 2006)