Tuesday, September 29, 2009

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.

Sunday, September 27, 2009

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?

Saturday, September 26, 2009

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. :)

Thursday, September 24, 2009

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.

Monday, September 21, 2009

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.

Saturday, September 19, 2009

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.

Friday, September 18, 2009


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…


Tuesday, September 15, 2009

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.

Saturday, September 12, 2009

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.







Friday, September 11, 2009

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. 



Thursday, September 10, 2009

Day 2 at Shands

Hi, it’s Bern…..gettin’ the hang of this typing thang…sorta. Today was a better day for me.  Mom FINALLY put a hot dog in my food so I could eat it.  And I got 2 LONG walks with her too!  Played in the neighbor’s yard across from the lake while Mom talked with the new lady owner of Captain, a white shitzue who doesn’t even know there are lizards in his yard.   He just sat there while I chased them, frequently mushing down the bushes as Mom yelled at me to stop.  But I caught 2 of them.  Spent a lot of time on my back scratching it on the grass….sure felt good.  Mom says Dad’s 2nd day of treatments went without any side effects and that now he’s just bored.  I understand bored….all I did was sleep while Mom worked on that funny thing with a screen that looks like a TV but only has words on it.  The doctor told Dad they will test the levels of the rabbit drug in his system early Friday morning and if the levels are ok he’ll get the 3rd treatment on Friday, 4th on Saturday and then he will come HOME on Sunday.  If the levels are not right, then they’ll have to skip a day of treatment and he’ll have to stay until Monday.  I can’t wait for him to come home so I can do 4 walks a day; I have to help keep Dad in shape so I look really sad and he thinks I’m the one that wants to go out.  Just call me Dr. Bernie.



Wednesday, September 9, 2009

Day 1 - Uneventful

Bernie’s asleep, so he asked me to make this entry for the day.  Larry’s 1st treatment went very well; he said he really had no nasty side effects.  Was a little sleepy from the Benadryl they gave him to ward off any reactions, but otherwise said he’s feeling pretty good.  Didn’t sleep very well last night from just being in a hospital and apprehensive about what today might bring.  So, he’s looking forward to a good night’s rest with day one under his belt.  Bernie and I did have 2 walks today but he seemed to just laze around all day and kept going to the back door looking for Dad.  I’ve tried to allay his fears, but he’s a little down in the dumps.  Maybe I’ll go give him a treat along with assurances that we are one day closer to his best friend coming home.





Tuesday, September 8, 2009

Bernie's 1st Entry

This typing stuf is hard! But I promized Dad I wuld let u know how he’s doin’. The stay at Shands in Gainesville will be 5-7 days, but Mom promised to wlk me at least twce a day. Oh, Dad…..they insorted a picc line to give him the ATG meds onse a day for 4 days but mite tke 5 days. Each dose tks 4 hrs to go in and they told him IF he has any bAd reactions, they will prob be the first day. Mom said she’d give me treats (uumm…chiken) if I was good. Oh, Dad? Well he was in good sprits when Mom left at 3:45 to mke sur she culd pik me up from the prision before they closed. Boy was I happee to see her; and she even tuk me for the laste walk down by the lake. Dad??? Oh yeah, he starts the treatmant tumrrow and may be feverish and have the chills, but the doctor’s monitor hem real gud to make sure he’ll be ok. I kan’t do this anymore tunight, but I promize to tell u more tumorrow.

Monday, September 7, 2009

Awfully Tight Gut

We’re on our way to Shands at 6am tomorrow morning. After the PFTs at 8:30am I expect to be admitted for a five to seven day stay and an ATG treatment. I don’t think I’ll have access to a computer, and I may not feel well enough to report anything anyhow. I've talked to Harriet about Bernie keeping you updated. She said she’ll start typing lessons as soon as she gets back Tuesday afternoon.



Friday, September 4, 2009

Here's the Plan...

I was wrong. Based on my PFTs (Pulmonary Function Test) here in Orlando, the doctors at Shands are sure I’m still in acute rejection. They’re concerned that if we don’t take stronger steps, my lung function could decline to the point where it could not be recovered. This is despite the fact that my lung function in the tests here was approximately 100% of what would be expected for a normal man of my height and weigh. We have to remember that in early June it was 160%.

So, this is the plan: we’ll go to Shands on Tuesday morning and take another PFT. If the numbers haven’t improved considerably, I will be admitted to the hospital for an ATG (Anti-thymocyte gobulin) treatment, which normally takes 5 to 7 days. ATG is an IV that is much stronger than Solumedrol. It completely knocks back the immune system so we can start all over tricking it into believing these new lungs belong here. It has some fairly nasty side effects (fever and flu-like symptoms), and makes the patient vulnerable to infections – at least until the immune system begins to come back. However, it has been a part of the transplant arsenal for a while and the medical community is used to dealing with it.

Unfortunately, as a result of the stay in the hospital and the concerns about infections, it’s quite likely that our vacation will have to come later. Harriet and I have our fingers crossed that we may be able to travel via air and still see my son’s in Dowagiac on the 19th of September (their band is playing at the Wounded Minnow) and enjoy my fraternity reunion in Chicago on the 20th through the 23rd. But the doctors at Shands will make that decision.

Once again, please don’t tell Bernie. He thinks he’s going for a long ride --with all those lizard to hunt.

P.S. If you really want to grimace, you can Google Anti-thymocyte gobulin. The stuff comes from rabbits or horses. :)

Wednesday, September 2, 2009

Immune to what?

As I think most people know, our immune systems are a marvelous part of the human body. They’re designed to fight against dangerous intruders – such as bacteria and viruses. Unfortunately, for transplant recipients, those dangerous intruders include the foreign organs they’ve received. In fact, the key problem in transplantation and the eventual reason for the death of most of us is our immune systems. Medical science has yet to completely outsmart them. And sooner or later the immune system figures out there is an enemy among us and attempt to destroy it. The medical term is rejection.

The average length of time of survival for lung transplant recipients is five years. However, every year it’s getting longer. I know people who had their transplant in 1996 – thirteen years ago.

This “lesson” in rejection is to let you know that I’m still in acute rejection. After two sessions of intravenous Solumedrol and Prednisone tapers (one in July and another in August) my FEV1 (lung function) tests which had temporarily increased, are declining again. Every other indication is that I’m as arrogant and pushy as always. No fever, no shortness of breath, no coughing, BP of 121/70, heart rate of 62, blood sugar at 106. And my chest X-ray is clear.

The doctors at Shands know that Harriet and I – and Bernie – are planning on leaving on a two week vacation on September 11th. And they’ve assured me their plan will take this into consideration. I think it’s going to include an IV of a stronger immune suppressant than Solumedrol, another Prednisone taper, and a bon voyage.

P.S Don’t mention this to Bernie. He crazy about the resorts he’s going to stay at on the way north.