For Those Living Without a Net

We ran into some friends at the store last Sunday. She used to teach with Susan but took a position at another school and they drifted into different circles. After a few minutes of high spirited catching up, her face got serious and she broke the news. She had been diagnosed with breast cancer and would be having surgery, a lumpectomy, on Friday morning. In just a few hours actually as I write late Thursday night.

"It's no big deal," she said. "They'll do the surgery, blast me with a treatment of radiation and that should be it."

"Oh no," I said. "Anything like that really is a big deal."

But I didn't push it. 

She is going into the surgery and treatment with a strong show of laughter and optimism, determined to conquer the disease with the sheer strength of her will. I hope she can maintain.

* * * * *

My cousin had a debilitating hemorraghic stroke several years ago. She was feeling bad, went to the doctor and was found to have extremely high blood pressure. The stroke hit before they had totally found the right combination of drugs to keep it under control. She's lucky to be alive, though it's not every day that she considers it luck. The left side of her body is still paralyzed. 

Yet her struggles to regain a semblance of normal life have been heroic. She now drives and has returned to teaching school. She swims, rides horses, and even skis and blogs. You can read her story here My Stroke of Fate or click on the link to the right.

* * * * *

Another good friend, a colleague of mine, has been battling colon cancer for a number of years now. He was diagnosed about the same time that my Polycystic Kidney Disease was getting bad enough to impose its presence on my stubborn consciousness. For a while we would kid ourselves that we were just trying to stay sicker and more critical than each other. But his cancer kept metastasizing, first in his lungs, then his liver, then his liver again. Each of these stages was treated with chemotherapy and radiation and he was pronounced clear of all but the last attack on his liver.

The chemotherapy is not working so well this time, but he is a stubborn fighter. 

* * * * * 

When the BK Virus was causing increasing kidney failure and I was going in for the first treatment of Cidofovir and immuno globulin, he once again joked about me one-upping him again. His concern for my condition was real. 

But there is a big difference between my situation and his. If the BKV wins and causes the failure of my grafted kidney, I just go back on dialysis. Life's routines change, but the quality of life is still good. We joke, but I've got a safety net. He's working without a net.

* * * * *

I remember years ago when we first encountered the severity of PKD. It was a scolding from the doctor we consulted for a second opinion when I faced my first kidney surgery. "The kidneys are already virtually useless," he told us. "Don't you know you have a progressive, uncurable fatal disease." No, we didn't know that, and crept in tears and fear to our car and back to work.

The shock was intense, but faded over time, only to return with a sense of anger and futility each time the disease reared its ugly head. But I've always had confidence and my strong sense of denial has enabled me to stay positive in the face of the negative prognosis.

My friends with cancer and my cousin with her stroke have no doubt had many moments of shock, anger and grief over the blows that life has dealt them, but they have battled back with great showings of confidence.

* * * * *

We heard about another old friend a few weeks ago. He and his wife and children (who were about the same age as our children) had moved back north a number of years ago. With no apparent illness beforehand, he died in his sleep of a massive heart attack. 

Boom. Just like that.

BK Virus: 9.8 Treatment Continues

Another early morning rainy drive. This time through a heavy downpour as the remains of Hurricate Hermine pass through North Texas. As I'm about to turn towards the hospital parking, I remember that that's where I went yesterday for another infusion and today I'm going to the transplant clinic for followup.

Yesterday the Cidofovir infusion had gone smoothly with no incident and I was out by lunchtime. Today I found out some results, with more good news. The number of copies of the virus was down to 850! A considerable improvement from 3,150 two weeks ago and from the initial count of 497,000 back in June. The blood test is drawn BEFORE the infusion, so the number is the result of the last treatment. We'll know the effects of yesterday's treatment when blood is drawn before the next treatment in two weeks.

Everything else is stable. Creatinine was up a little at 3.3, but Dr. Nesser was not too concerned. Blood pressure is up, so he is restarting one of the blood pressure meds that had been put on hold. Hemoglobin and Red Blood cell numbers are both up. Still low, but improving, so the Procrit injection was put on hold again.

All in all a good day, with steady improvement in the fight against the virus. I was a surprised that the creatinine wasn't better. I've sure been feeling a lot better the last couple of weeks with a lot more energy.

BK Virus: 8.25 The Weather Turns

It was a relatively cool and definitely a rainy morning when I left the house for an early lab time and doctor's appointment at the Dallas Transplant clinic. Relatively cool means 72 rather than 85 at 7:30 in the morning. The first cold front of the season had finally broken through the long run of 100+ degree days.

The wind switched to the north early yesterday soon after I got home from my second infusion of Cidofovir. The morning in the hospital went quickly and smoothly and I was not experiencing any of the wrenching side effects from my last infusion. So the culprit was definitely the immuno-globulin, so if it's ever offered, watch out! (Although I don't think it has that effect on everyone.) I was extremely nervous about the infusion. My pulse was racing and my blood pressure was high all morning, but it came down quickly once I got home.

The early lab today was to monitor the effects of the drug on my kidney. (Remember that Cidofovir's primary side effect is its nephrotoxicity.) I received the lab results from both this morning and last Friday and the results from both were good. The creatinine was way down from 5.1 to 3.5 on Friday and it improved to 3.0 today. The hope is that the inflammation from the virus is going down allowing the kidney to function. The other possibility is that the kidney is recovering from the trauma of the immuno-globulin reaction. The family logic is "both." Whatever. It's going down and I'm feeling better. 'Nuff said.

I mentioned to Dr. Nesser that "it's ironic to be so happy about a 3.0, when just a few weeks ago we were so alarmed I was in the hospital the next day to check it out!"  He just smiled and said, "It wasn't so good the other day, but it's pretty good today."  Hmm. I guess the meaning's always in the vectors.

Even bigger news was the progress against the BK Virus, the number of copies of the virus cells was way down. From 54,500 (from a plasma sample taken just before the LAST infusion) to 3,150 (from a sample taken just before the infusion yesterday.) So that's huge! The difference is mainly due to the Cidofovir infusion. It's definitely working.

 So unless I start showing really bad symptoms I'll go a couple of weeks without seeing a doctor. Another infusion is scheduled in two weeks with labs and a doctor's visit the following morning.

On the third front, I'm still somewhat anemic, but the numbers are getting better as well. Insurance finally approved the Procrit injections, but I'm feeling OK, so we decided to see if I continue to improve without incurring the expense. 

And with that I ventured home through the cool, cloudy August morning, had some breakfast and a nice morning nap!

BK Virus: 8.16

The weekend started last Friday with a restful day in the hospital dozing after the biopsy. Travis drove up from his new home in Boerne, Texas (in the hill country just north of San Antonio) to get another carload of stuff, so it was a very pleasant weekend. Too much to eat, too much to drink.

After the trauma of the immuno-globulin reaction, the big jump in creatinine and all the anxiety that I experienced leading up to the biopsy, it was somehow relaxing to hear that the inflammation was being caused by the BKV and that my body was not rejecting the kidney. I had almost convinced myself that I would be back on dialysis in a matter of days. I'm thinking now that while I might wind up back on dialysis eventually, it won't be for a while and it won't be without a fight.

And with that positive frame of mind I walked into the clinic Monday afternoon for labs and a visit with the doctors.

And for a change the news was good.

Creatinine was down significantly, from 5.4 to 4.1. Everyone breathed a big sigh of relief. Of course what caused the improvement in kidney function is not necessarily clear. It could just be that the kidney is recovering from the shock of the reaction to the IVIG. It could be that the increased dosage of prednisone over the weekend reduced the inflammation.

The number of copies of the virus was 54,500 vs 45,000 a couple of weeks ago. It sounds like a significant difference until I remember that the initial count in June was 497,000. So the virus is holding steady, creatinine is coming down, time to go back on the attack.

I'll go in for another round of labs at the end of the week and then back into the hospital next Tuesday for another infusion of Cidofovir. And then back for a another visit to the clinic the following day.

And no doubt do it all over again!

(The image shows the cell structure of a rejected renal transplant.)

BK Virus: Biopsy Two

The day went very smoothly once we got to the hospital. Check-in was smooth and easy and unlike last Friday which was a mob scene in the waiting room, today the room was virtually empty. Even nicer was the room which was opened to the north side of one of the older buildings, so the north light was filtered through large old live oak trees (and no direct sun!)

Dr. C monitored the biopsy which was nice. He's a good doctor who is willing to discuss every facet and listens to what the patient is saying. He performed some of my pre-transplant exams, post-transplant immediately after the transplant and I have seen him a couple of times for my routine check-up's as well. 

The biopsy nursing crew consisted of the same crew who was there last time. They take pride in what they do and I think they like to think of themselves as the "pros from Dover." It's a relaxed but professional environment. When I wanted to see the needle, they showed me the needle. When I wanted to see the tissue samples, they tried to show me the tissue samples. Unfortunately I couldn't raise my head high enough to see them, but the effort was made.

And then it was the mandantory six hours of bed rest. Timing was good, I caught the PGA championship. (The first biopsy was during the U.S. Open - nothing like a golf nap!)

Dr. C came by late in the afternoon. The cell-count was not back yet, nor were the results of the stains. We'll get that information Monday when I go back to the clinic. The samples had been examined under the microscope and the feeling is that although most of the inflammation is from the BK Virus, there could be an overlay of inflammation from a smoldering rejection. To combat that possibility, he prescribed an increased regimen of steroids over the weekend, going back to normal dosage on Monday.

So, the good news is that my body is not rejecting the kidney despite the drastic reductions in immuno-suppressants. The bad news is that the BKV is still wrecking havoc on the kidney. I expect we'll do another Cidofovir infusion in a couple of weeks, but predicting the future in this BK Battle has been pretty iffy.

But I'll take today's news. I was really nervous and upset going into the test after the disastrous reaction to last week's infusions. I think the frustration and depression came through in the last post.

4:20 finally came around and I was able to get up and out of bed. I got dressed and the nurse rolled me down to street.

And with that, Susan and I headed out for a plate of Nachos and a Margarita to start the weekend!

BK Virus: 8.12

Went in for a blood draw this morning to see if the creatinine miraculously dropped overnight, but no. It seems that things get suddenly worse more than things get suddenly better.

So I go in for the biopsy tomorrow and find out whether the damaging factor is rejection or BK Virus and to determine the next course of action. It's a tough conundrum. Treat the rejection and the BKV increases. Treat the BKV and the door is open for rejection.

Miraculous improvement not anticipated anytime soon.

BK Virus: Murky Waters

Another day, another set of labs. Some good news! The creatinine is down a bit: 5.3 from 5.6. Not much, but it's better! Now the question is, "Why?"

Of course the answer is tied to the cause of the increase and we are faced with the same multiple choices as yesterday:  1) reduction in BK Virus, 2) recovery from impact of Cidofovir or 3) recovery from the massive reaction to the immunoglobulin.

And the favorite choice is 3) recovery from the massive reaction to the immunoglobulin. The action plan is to delay the biopsy a day and run another set of labs tomorrow. IF the creatinine falls below 5 the assumption will be that the kidney is recovering from the infusion and we will go into a wait and see mode. If the change is minimal, we'll go ahead with the biopsy.

In addition more meds are being removed from the cocktail. Myfortic was removed in favor of Leflunomide which is mainly used to treat rheumatoid arthritis. It is an immuno-suppressant which is also anti-inflammatory and will help the kidney recover. Two blood pressure drugs were removed and the one remaining was increased. I should start back on a round of Procrit treatment to bring my anemia under control. That's good news. I need more meat and protein to feed the Procrit (aka Epoegen, Epo).

So it's off to work. My other direction was to hydate like crazy to keep fluid flowing through the kidney. But it's good general advice on these August scorchers.

HYDRATE OR DIE!!!!