Tuesday, December 7, 2010

Does Three Make a Collection?

I hail from a family of collectors. Collecting Curteich postcards was an early foundational activity with my wife. It has grown into numerous, highly specialized collections for which we are continuously searching. My sisters have collected men with penchants for curiously curated collections. One in particular has collections that exceed any notion of reason, but visiting his house is always memorable event. But the standard has always been 'three.' Whatever you have, if you three you can call it a collection.

My newest collection seems to be exotic diseases. The mainstay has been PKD. Polycystic Kidney Disease. Which morphed into End Stage Renal Disease, dialysis and transplant. I went for a year with no kidneys. Did I still have PKD even though I no longer had Polycyctic kidneys? The disease is genetic and I still suffered from its effects... I never knew anybody with PKD until I met people through the Internet after my transplant. And until my son was diagnosed.

Then I discovered BK Virus. Or it woke up. I had positive antigens at the time of my transplant, so I guess I first acquired the virus 55 years ago. Current tests show no copies of the virus are swimming around in my blood, but it feels like it's still lurking in the shadows. I have yet to talk to someone with BK Virus. I've read a couple of blogs, but that's about it.

Then last week in the middle of a nasty cold, my eyes turned bloodshot and painful. The left eye cleared but the right eye got worse. The orbital area ached and was sensitive to touch and the eyeball itself ached and throbbed with pain. Tearing was constant and vision was blurred. Adjusting to light took forever. The assumption was that it was a nasty case of conjunctivitis, but the eye didn't feel gritty and the secretion was not sticky and yellow.  All this transpired over the Thanksgiving weekend and I just endured until doctors opened up Monday. I was able to get in to see my opthamologist Monday afternoon. 

After the exam, his first question was whether I had rheumatoid arthritis. No, I said. He asked about several other conditions, the answer to all being the same No. Then "We'll give you a pass this time, but the next time this happens we'll start testing to find the cause. What you have is Iridocyclitis." I said, "What" 

Iridocyclits is an inflammation of the iris and the muscles that control the iris. It is caused by either chemical irritants or is a complication of certain infectious or auto-immune diseases such as rheumatoid arthritis. Treatment is by dilation and then a strong dose of topical steroids (prednisone eye drops) and seems to have worked fairly quickly. Symptoms are much relieved and I'm slowly tapering the dosage.

An interesting coincidence is that Dr. Nesser had recently increased the dosage of Arava (Leflunimide). The main purpose of the drug is to treat rheumatoid arthritis, but it also has anti-inflammatory and anti-viral effects and so I was taking it for the BKV. I had an appointment at Dallas Transplant the day after I saw the opthamologist and they stopped the Arava.

The cold and eye are much better now, thank you very much.

Other news is not so good. High blood pressure continues to be a problem, with nighttime spikes climbing to dangerous levels despite increased dosages of meds. And creatine continues to climb. The clearance number was up to 3.7. The glofill test results were equally discouraging. Kidney function is almost to the point where I would qualify for another transplant, though not to the point of dialysis. Kidney failure causes high blood pressure which further damages the kidney. I've been down this road before. Damage from the BK Virus inflammation and from the Cidofovir infusions have also contributed to the loss of kidney function. Ouch.

So, I have a prescription for a new blood pressure medicine and go back in a week with a 24 hour urine sample. The irony is that with the cold gone, and the eye feeling better, I haven't felt so good in weeks!


  1. Thank you for sharing your PKD story. My husband had PKD and I know
    how it never seems to be just about your kidneys. It affects many other organs as well.

    I'm including this link to a new cartoon video about PKD (in an attempt to make a complicated disease easy to understand) to help raise awareness about this disease, which seems to be largely unknown despite the number of people afflicted:http://www.youtube.com/user/PKDFoundation

    Thanks for helping spread the word!
    Amy Epstein

  2. I have not read in awhile and I am terribly sorry about your creatin and blood pressure. I know that Bruce has been on and off of more blood pressure meds than I could ever count. One strange thing is the ones that didn't work or he couldn't tolerate pre-transplant work better now and the ones that used to work did nothing. I am curious if they have offered any alternative medicine for reducing blood pressure or protecting kidney function? I think of you often and pray for some good results next labs.

  3. My dear Cuz, I am so sorry to hear about the creatin and the high blood pressure. Those two words frighten me so. Your fortitude and positive attitude is inspiring. Thanks for fighting the good fight. Love you, marian