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.

 

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.

 

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.

 

 

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.

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.

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.

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.

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.

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?

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.

Back to Shands

We leave for Shands tomorrow morning around 6am. Labs and tests at 8am (blood draw, PFTs – pulmonary function tests – and a 6 minute walk). We’ll meet with the doctors at 10am. I suspect they will either modify my medications again or possibly put me back in the hospital for more ATG or some another treatment. I’ve already talked to Bernie. He’s ready to take over the blog for a while if he’s needed.

P.S Mum’s the word. He thinks I’m on a squirrel hunting trip.

Mother duck

Have I mentioned her? She lives on the Rolling Hills golf course lake Bernie and I always walk past. This spring she had a brude of seven chicks. Sometime during the summer one of them disappeared, unfortunately. But she’s taken great care of the remaining six and now they’re almost all grown up; big enough that it’s hard to tell which one is mom bobbing in the water.

I’ve never seen the father with them. I guess he got cut out the chick raising fairly early on. Not long after the two mallards got together and he started things…well, you know what I mean.

It got me to thinking. That seems to be the case with us humans too. I know some dads walk away, and others shy away from raising their children. But even those who really want to be involved end up taking the bleacher seats, always watching from a distance.

Do dads do something wrong? Or is it just a mom thing? For whatever it’s worth, it hurts to feel like you’re on the outside, looking in at your family.

Ring, ring! Hello? Hi dad – is mom there?

An update note

The new best laid plan is progressing as planned. No side effects from the new med, Zithromax. Or the increase in the Prograf to 1.5 mg and the return to Imuran.The prednisone taper (down to 50mg today) only has me thinking about eating the couch…just thinking. My FEV1 has moved up slightly. And most importantly, Bernie has no idea anything is wrong. We’re still walking about two miles a day. So far on this morning’s walks he’s socialized with three dogs and chased six lizards and one squirrel.

Same old same old. :)

Best laid plans

Sometimes they don’t work. Apparently, that’s the case with my rabbit juice treatment. I must have an immune system as stubborn as I am. Since Tuesday of this week my FEV1 (lung function) has been declining which means the T-cells haven’t completely given up the fight, still trying to rid my body of these “evil intruders”. I yelled at my chest a few times this morning trying to explain that they’re attacking me, but I guess I don’t know their language. So I called my transplant coordinator; she talked with Dr. Baz and called me back this afternoon.

The new best laid plan includes a trip back to Shands this coming Wednesday for more tests during “Clinic,” the regular check up time for transplant recipients. In the mean time they’ve made a few changes in my medications. Starting tonight I go back on Imuran, the immunosuppressant I was taken off of before the ATG treatment. I also start a Prednisone taper starting at 60mg and going down 5 mg per day. I’m to increase my Prograf, another immunosuppressant, to 1.5 mg a day. And finally, they’re putting me on Zithromax, a powerful antibiotic that is also sometimes used in immune system suppression regimens.

So, take that you ornery T-cells!

P.S. For anyone interested, I'm not feeling bad, just a little breathy. But Bernie's still getting his walks of two or three miles a day.

Another lesson from Bernie

Yesterday, on our first walk of the day, Bernie broke with ADT (Ancient Dog Tradition) and reminded me of another truism. As I’ve noted before, I think one of the great things about dogs is that they live in the moment, not worrying about the past or the future. So, imagine my surprise when we got in front of the yellow house down by the lake, and Bernie went straight to where I’d made him drop the baby gator. He sniffed and sniffed all around the spot, then looked up at me and cocked his head. I could almost hear him ask, “Where is it?”

For a second I was stuck. Another dog or raccoon, or something took it? It’s in the garbage? Then it came to me. I shook my head and told him the same thing he hears when he’s begged the last scrap from me at the dinner table. “All gone, Bernie.” Satisfied, he turned and headed off down the road, an eye out from the next lizard.

And, as usual, he left me thinking. That thing about opportunity only knocking once may be a cliché, but in this new life I’ve been lucky enough to gain, I’m going to try to take advantage of every one that comes my way.

You never know...

I’m feeling better; my lung function blows are back up to 3.33 and Bernie and I are walking a mile and a half to two miles a day. And, as usual, he has me thinking.

This afternoon, we were about half way back from the lake, in front of the yellow house at the corner, when Bernie picked up something from the road. At first, I thought it was a stick because of the long pointy thing protruding from one side of his mouth. I made him stop and sit. But when I got closer, I started commanding, “Drop it! Drop it.” Bernie didn’t like it, but finally complied. What he’d picked up was smushed like it had been run over by a car. However, it was clear that the long pointy thing was a tail, and what Bernie had picked up was a young gator. I told him to leave it and he happily moved on sniffing for his next lizard.

The point is, you never know what the next walk will bring and it’s no good worrying about. Like Bernie, it’s best to live one lizard at a time.

Advice

Just a few words to let everyone know that you DO NOT want to have an ATG treatment. That truck full of bunnies that ran over me backed up and is doing it again, and again, and…

 

Rabbit flu

I want to thank Harriet for her excellent job at teaching Bernie how to type. With her help, he took over here in my absence and carried on nicely. However, I’m not sure about letting him go on Twitter. He tends to blab.

Anyway, I survived the ATG treatment at Shands and I’m recovering now at home. According to Wendy, my new transplant coordinator, it feels like you’ve been run over by a truck. She might be holding back a little on that description, but you get the idea. One of the doctors at Shands explained it so even I could understand. And also cleared up another mystery: why everyone at Shands calls ATG rabbit juice.

T-cells or lymphocytes are a central part of our immune systems, the soldiers in our blood who fight intruders such as bacteria and viruses -- and foreign bodies like transplanted organs. When I went into rejection it was because, despite my anti-immune medications, my t-cells – smart little devils -- had figured out that my transplanted lungs were not natives. So, they attacked.

You’ll recall that the doctors made two attempts to correct the rejection using the high powered steroid Solumedrol and both were unsuccessful. So, more powerful medicine was indicated. We needed something that would attack my t-cells. And this is where it gets interesting.

Some really bright medical researcher figured this one out. All animals have immune systems. So why not inject another species with human t-cells? Then their immune systems would develop anti-bodies to attack the intruders, the human t-cells. And then we could extract the anti-bodies from the other species and inject them into the human patient with rejection. The anti-bodies would attack the t-cells and the rejection would stop.

I don’t know why the researcher picked rabbits, but there must have been a lot of those bunnies in the truck that hit me. I may be the only person in Orlando with rabbit flu.

Final Entry

Yipee!  Mom says Dad’s comin’ home on Sunday.  I can’t wait!  He went through all the treatments without any side effects except for his blood sugars being off the chart.  They were so high today the meter wouldn’t even give a reading….whatever that means.  Just know they had to give him more insulin to get it back in the right range and they said it was all because of the meds.  So guess the Twizzlers Mom left in his room when she took his book to him on Monday weren’t the only culprits.  

 

Oh, I was a bad boy today; Mom left me alone to go get her car worked on and I was able to push open the door in the shower room where I found a really interesting bag of goodies.  I had such fun…..the toothpaste tasted pretty good, but the shampoo and conditioner made my mouth soapy.  The instant heat wrap package innerds were like coffee grounds, so I just spread them all over the rug with the baby powder. I thought it looked really neat.  Unfortunately Mom didn’t think so.  She was so-o-o mad; I was really shaking because she yelled so loud.  And if that wasn’t enough punishment, she didn’t even take me for a walk until after she left again to go get groceries.  I just don’t like it when they leave me alone.  I get so bored and the door was open just a little, so I just couldn’t help myself.  Sigh.

 

Well, the leader of the pack will be home tomorrow, so all will be right with the world again…..and he can get back to blogging.  It’s been fun, but I wouldn’t want this to be my day job.  Chasing lizards is more my style.

 

Love,

Bernie 

 

 

 

Day 3 Treatment

Bernie’s sacked out next to me as it’s fairly late but we wanted to give you a quick update.  Day 3 treatment was uneventful, except that Larry was low in sodium, so he had to do 4 hours of the rabbit drug and then 4 hours of a sodium chloride drip.  I asked why he just couldn’t have some fries with lots of salt!  But he’s coming through the treatments with no side effects and is on the downhill slope to being back at home.  As it stands today, I’m to go get him at 10:30 Sunday morning.  Thanks goodness….Bernie says I’m not as good a conversationalist as Dad.