Wednesday, October 28, 2009

Shands -- the bad and the good

We went to Shands this morning – a two hour drive at 6:00am. My clinic tests – FEV1, and six minute walk were not good. The FEV1 is now down to 0.94 (at home before we left it was 1.16 but that is normally higher than when I do it with the Shands’ professionals). The six minute walk was negative too; fewer feet walked and lower oxygen saturation afterwards.


However, our meeting with Dr. Baz was another story. First, he told us that the anti-body test was negative which means I could receive lungs from any donor than matches my blood type. Then he told us that I’ve already been put on the transplant list and that, based upon my test results, I should be three quarters of the way up the list. He also said that if my FEV1 gets low enough they will put me in the hospital with oxygen therapy and exercise until lungs become available.


Finally, he made a point of telling us that the survival for re-transplant patients is essentially the same as it for first time transplants – an average of five years.


Tuesday, October 27, 2009

Shands visit

My FEV1 (lung function) is down to 1.19 this morning. I had a call from Wendy, the transplant coordinator, and the doctor’s have moved up my clinic visit to this Wednesday instead of next week. So Harriet and I will be going to Shands tomorrow morning for the regular tests – blood, X-ray, breathing, and the six minute walk, and meeting with doctor Baz to talk about what’s next. The Cyclosporine may arrive by then and we could also start that treatment. If not, we’ll have go back sometime later this week when it does.


I used the portable oxygen to take Bernie for three shorter walks today. However, he’s looking at me with that cocked head. I think he know something’s up. Smart cookie, that Bernie.


Sunday, October 25, 2009

Still sliding

My FEV1 was 1.36 yesterday. Today is was I.32. Harriet and I took Bernie for a walk down to the lake this morning. I took him for another walk in the middle of the afternoon. I spent most of the day on oxygen. We’re hoping for a call from Shands about the Cyclosporine tomorrow.



Thursday, October 22, 2009

New numbers

I don’t pretend to know what this means. I’m just keeping my fingers crossed.

As you may know my FEV1 (lung function) has been declining dramatically – not just every month or week, but every day. It has dropped from a high of 4.46 in June to 3.82 on September first. On October first if was 2.82. And it kept falling to 2.12 on the tenth, 1.93 on the thirteenth and 1.72 on the fifteenth. On the sixtieth it was down to 1.54. However, on October twentieth it had only dropped to 1.47. And this morning it was 1.50.

In the meantime, the doctors at Shands have approved oxygen therapy and the insurance company has already provided a concentrator and portable oxygen equipment. I’m now using oxygen at night. Next week I’ll begin the inhaled Cyclosporine treatment.

P.S. To make sure the portable oxygen works I used it on our last walk this afternoon. Bernie thinks it’s cool.

Friday, October 16, 2009

Return to Shands

We’re returning to Shands on Monday for additional tests relative to getting on the transplant list. We’ll also pick up a nebulizer for the inhaled cyclosporine and get instructions to operate it.

P.S. Harriet and I went out for breakfast this morning at First Watch. When I got back home, Bernie had been a bad boy. He pulled my jeans out the doggy door onto the pool patio, and messed up the bedroom rugs. Oh…and ate a box of Gas-X. That’s right, a whole box of those pink chewable tablets.

Thursday, October 15, 2009

The Shands update

First, the fun stuff: Bernie went crazy when we got back. We’d told the maids who come on Wednesdays that when they left they should lock him in our bedroom (of course, there’s a doggie door so he can roam the backyard pouncing on lizards). But we were longer than we expected and didn’t get home until almost 5pm. And when I opened the bedroom door he exploded into the hall, circled me three times, and then dashed up the stairs circled the smaller couch twice and nearly knocked Harriet over.

I think he was happy to see us. But not quite as happy as when I took his leash down. I never hook it on him, but he knows that means we’re going on a walk. And so we did.

Now, as regards the more serious stuff. The doctors are concerned about my declining lung function. They are not yet ready to call the Zithromax treatment a failure. I’ve only been on this powerful antibiotic for two weeks and they say it can take up to four weeks before you know the result. So, we will continue.

However, we are also moving ahead with two alternatives. They have already contacted the company running a test with inhaled cyclosporine (a key immune suppressant) and requested a supply of the drug for me. And we have begun the various tests that need to be performed for the doctors to put me on the list for a re-transplant. I believe I mentioned the PRA blood test which was done at Shands on this trip. Before we left they also had me in for an echocardiogram.

Finally, we’re scheduled for another meeting with the doctors in two weeks. In the meantime, life goes on. And Bernie is looking at me as if it’s time for our second walk this morning.

Monday, October 12, 2009

Latest update

I have no idea where this will lead, but I thought I should put the information in this blog.

I called Wendy,my transplant coordinator, this morning and left her a message that my FEV1 (lung function) was continuing to decline and had now gone below 2.0 – about 60% of predicted for a man of my age and weight. This afternoon she called back and told me that Dr. Baz, the lung transplant director at Shands, had ordered a PRA (Panel Reactive Antibody) test for me when we go to Shands on Wednesday morning.

Naturally, I asked what a PRA was. She explained that it was the first protocol for re-transplantation.

Wednesday, October 7, 2009

An apology

On second reading, I’d like to apologize for last night’s entry on this blog. I’m the only Stooge that was involved. My attempts to make light of the situation were a mistake. All three types of chronic rejection are serious conditions and deserve better. I wish I could confirm that I have type one or two chronic rejection, but the rate of my lung function decline would suggest type three. According to the doctors, even that doesn’t mean Zithromax and other efforts can’t stem the drop. It has with other patients. And, in fact, my FEV1 this morning was only .1 lower than yesterday. That’s some positive news.

But it takes a ton of it to cover up the fear, which sometimes makes you do silly things – just like the Stooges.

Tuesday, October 6, 2009

The Three Stooges

It turns out there are three kinds of chronic rejection. None of which are nearly as funny as Larry, Moe and Curly.

Stooge 1 begins with a decline in FEV1 (lung function) and then stabilizes and can remain that way for a number of years. However, in almost all cases, it eventually morphs into Stooge 2 or 3. And then moves from there to the final conclusion.

Stooge 2 involves a slow, steady decline in FEV1 over a number of months or years, may resolve its decline at times, but later commences again and proceeds to the final conclusion.

Stooge 3 exhibits a sudden, dramatic decline in FEV1 and normally leads to a final conclusion in a matter of months.

According to the doctors at Shands and what I’ve read on the Internet, Zithromax has been shown to be an positive treatment for all three of these conditions, at least in some cases. For some patients, it has not only stabilized FEV1 decline but reversed it.

So everyone is clear, in a phone conversation this afternoon my transplant coordinator told me it’s too early to determine what type of chronic rejection I’m experiencing. And it’s too soon to expect any reaction from the Zithromax I taking – I’ve only been on it a week and taken only 5 tablets. I’m scheduled to talk with the doctors again next Wednesday. Maybe then we’ll have a better idea of where I am and what comes next.

By the way, did you know that Moe’s real name was Moses Horiwitz?

Saturday, October 3, 2009

On squirrels and other beasties...

On our last walk today Bernie, once again, was his imitable self and had me thinking. During our time together he must have chased 200 squirrels that escaped by scampering up trees, leaving him with his paws up on the trunk looking up. I’ve told him dozens of times that he can’t climb trees, but it doesn’t make any difference. Today he stopped down by the lake and sat for a full minute looking up at squirrel high up on the branches of an oak while it chattered away at him. He just refuses to give up.

I’ve picked up a lesson in his stubbornness. When we were at Shands earlier this week, the doctors explained to me that I’m not in acute rejection. It has morphed into another condition called chronic rejection which is sometimes known as bronchiolitis obliterans. I wouldn’t be surprised if that somewhat indelicate medical description conjures up Indiana Jones’ classic remark, “I’ve got a bad feeling about this.” For the record, the median survival time for patients with chronic rejection is 31.34 months.

However, with a nod to Bernie and his squirrels, I want to emphasize the word median in those research results. There are many transplant recipients with chronic rejection who have survived much longer, years longer. This week the doctors put me on a regimen including Zithromax which has a proven record of halting the progress of chronic rejection and in some cases actually improving a patient’s lung function.

Finally, I want to point out that I can climb trees. And I refuse to give up.