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. 

 

 

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 2^nd 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 3^rd treatment on Friday, 4^th 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.

 

 

Day 1 - Uneventful

Bernie’s asleep, so he asked me to make this entry for the day.  Larry’s 1^st 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.

 

 

 

 

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.

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.

Regards,

Larry

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 19^th of September (their band is playing at the Wounded Minnow) and enjoy my fraternity reunion in Chicago on the 20^th through the 23^rd. 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. :)

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 11^th. 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.

Into each life...

Bernie and I took a walk in the rain late this afternoon. Normally, he’s out ahead of me searching for lizards, but in the rain he stays right by my side. I can’t decide whether he’s sticking close because the occasional thunder is scary, or to make sure the Alpha is protected. Either way, it’s a nice feeling.

I needed it today. I don’t know why, but I’m in a down period; the old hypochondriac coming back. I’ve been looking forward to this vacation we’re planning with every fiber. And now I’m worried that something is going to happen with my health to get in the way. My lung function is down slightly – it's only about 120% of what would be predicted for a man my age and weight. I know. That’s silly. But it’s down from 140%. And I’m a worry wort.

Maybe I should do like Bernie. When we got back from the walk, he just shook off the rain, walked into the kitchen, and waited for his treat.

Seperation anxiety

I think it affects all of us at one time or another. I remember how afraid I was sometimes when I was alone restricted by the oxygen concentrator. What if something happened; a fire or lightning strike, a burglar? I couldn’t even run.

This afternoon I got another prospective on separation anxiety. I had to go to the eye doctor to get my eyes checked for a new pair of glasses. When I came back Bernie was overjoyed to see me. Until I found the new mat Harriet had bought to put in front of the stove in the kitchen. My best estimate is that it was in 20 to 25 pieces.

Grrrr!

Just like Bernie

Did I mention we had to take Bernie to a canine dental specialist a month ago? Apparently, when he was a young puppy at a rescue center in Marion County, his litter was exposed to distemper. Fortunately, Bernie didn’t come down with that lethal disease. But he did have a very high fever. As a result, the roots of some of his teeth are not great. After an examination, the dental specialist pulled three of his back teeth and bonded all of the rest of them. From here on in we have to make sure he doesn’t chew on bones – or his favorite treat, ice cubes. Oh, and I have to brush his teeth every morning with a plastic thing I put over my finger covered with chicken flavored tooth paste. He loves it!

Sometimes I think Bernie and I get closer every day. I had to go to the human dentist specialist today because of a sensitive tooth. As you may know, one of the side effects of long term Prednisone use is bone loss. By now, you’ve already guessed. He pulled it. And right now I’m brushing my teeth with…Dewars.

A good feeling

I should explain why I haven’t posted much here lately. I’ve been busy working on an old novel. It’s something I started writing while I was sick, back in 1996. It feels good to get back to it, good to find something to do with this new life.

Our "broken" health care system

I was on the Internet for an hour last night taking part in a lung transplant chat group. There were men and women from all parts of the country who had suffered with all kinds of respiratory problems; COPD, IPF, CF, etc. I was the baby of the group, having had my transplant in May of 2008. One young lady had a double lung transplant in 1997. We talked about all manner of things. Our medications, our travel plans, our caregivers, our donor families. Our hopes and dreams for the future.

Think about it for a moment. You’re dying and then a team of doctors and nurses come along and replace your diseased lungs with healthy ones. Giving you a new life. Absolutely incredible!

I’m sure there are improvements we can make in our health care system, but if Washington thinks we have to replace it with a government bureaucracy, there’s something in Washington that’s broken.

The Big Seven Oh

Yesterday was a great day, beginning with a telephone call at 8am from 12,000 miles away. My dear friends Geoffrey and Ruth Ingall wished me a happy 70^th birthday before turning in down under. In the excitement, I forgot to remind him that he would be 67 today. However, I made up for it by sending him a rude email this morning. Later in the day Harriet and I took my 91 year-old mother out to Mimi’s for a warm family dinner.

I’ve been amazed at how many folks have wished me Happy Birthday, particularly those old friends I haven’t been in touch with for a while. Thanks everyone!

But possibly the best feeling was at lunch today. My niece, Christine, invited my to join her at Dexter’s, a trendy place in Winter Park. Over gorgonzola burgers and a bottle of Whoop Whoop Shiraz we talked about everything from her new friend to my new novel. When the waiter came with the check, she told him it was my birthday. I had had enough red to ask him how old he thought I was. He put his finger to his temple, squinted at me a moment, and then said, “Fifty-seven?”

The beautiful thing is that I never saw her slip him the ten dollars.

Another lesson learned

One of the things the doctors impress on you before you begin treatment for rejection is the fact that Solumedrol has some nasty side-effects. I think I mentioned problems with sleeping, increased appetite, indigestion, dizziness, and weakness. If I didn’t, I should have.

Another thing you need to be careful about is your blood sugar. The array of medications that transplanted people are already taking tends to lead to at least steroid induced diabetes. For that reason, most of us measure our blood sugar every morning and every night. In my case, the transplant team wanted to keep my normal level under100. Being realistic, they accepted 150.

Solumedrol can make that number spike through the ceiling. It’s not a surprise to see it jump to as high as 400. The doctors told us that. We knew that. But it can be controlled with injections of insulin. No problem. All you have to do is take your blood sugar before every meal -- morning, noon, and night. Then inject the indicated amount of insulin.

But what happens if you’re feeling so good about your recovery a few things slip your mind? Like lunch? We found out last night. When Harriet got home about 7pm and noticed that I was flushed. With a silly grin. About twenty minutes later, we finally decided to check my blood sugar: 514.

We followed the instructions in the Transplant Handbook. I took 18 units of insulin and said “Duh!” Everything was fine this morning.

Solutions

On the first of our walks yesterday Bernie and I had another face off with Kid Rabid. The cat which is not quite half his size began stalking Bernie from across a long lawn. I’d guess he was fifty foot away, crouched down in the grass, head down, moving in a threatening step by step crawl toward the dog.

I had to demand obedience from Bernie. I insisted he heel and walk away with me, but he resisted. So, I made him sit. He did, and then lay down on his own, facing and riveted on Rabid. Every muscle in his body tensed.

I’m not sure why; maybe I’ve just gotten tired of trying to control myself in the face of threats, hold down my anger, stop reacting. But against my best judgment, I leaned over to Bernie and whispered one word: Okay.

Rabid escaped at the last minute by scrabbling over a neighbor’s fence two homes away. I don’t think we’ll ever be bothered again.

And something else occurred to me looking into Bernie’s smile afterwards. Maybe sometimes the thing to do is attack.

The home nurse and the couch

She arrived a little late to give me my first of three IV treatments of Solumedrol. But that was no problem. It was Terri, the nice lady who has worked with us before. In fact, her son is a friend of Mark’s and is in a band in North Carolina. So we had a good conversation while the IV was dripping. Bernie knows her too and listened while she told a story about her two dogs.

The only problem was a couple of hours after Terri left. If you know anything about Solumedrol or prednisone, I think you’ll understand when I admit that I ate the couch.

Don’t tell Harriet. I’m blaming it on Bernie.

Harriet and Lizard Time Travel

At the last minute, we decided Harriet should join our daughter Rebecca and a group of her friends – including Mark – for a weekend vacation at Ed Walley’s (Harriet’s old friend) cottage on one of Tennessee’s great rivers. She left at 10 am this morning and will meet Rebecca in Nashville this afternoon. It will be a great chance for her to spend some time with Ed and get young again. Well, at least younger. Rebecca is 29, Mark 24.

In other news: On one of our afternoon walks down by the lake today (where we saw the reading girl without her cell phone) Bernie caught a lizard. I insisted he “drop it!” without success. Despite my protestations, he carried it in his mouth all the back to our front lawn. I’m not sure whether he dropped in the grass to eat it, or let it go. But it got away.

I couldn’t help but imagine how the lizard felt. One minute he was scooting across the blacktop trying to escape a monster, then suddenly he’s in another time and place. The grassy world he’s dreamed about.

I think that can happen to us sometime. We get wrapped up in fear and forget about our dreams. But they can come true.

A final note: The folks from Shands called today. I’m still in rejection, but not nearly as bad as before. We’re going to start another session of Solumedrol IV treatments tomorrow and then do another taper of prednisone.

The good news

Bernie is going to be okay. On the recommendation of our dog trainer, we took Bernie to see our vet a couple of weeks ago. The trainer said he through Bernie had a cavity in a tooth. The vet took a look and asked if Bernie had ever been exposed to distemper. We told her that his litter of eight puppies had been born at a facility in Marion County that had had a problem, but they had all been vaccinated soon after birth.

She recommended that we have Bernie seen by a dental specialist. We couldn’t get an appointment until today. After his examination the doctor recommended a series of x-rays and the cleaning of Bernie’s teeth. After that we had a long conversation. Bernie has serious problems with his teeth, probably the result of exposure to distemper. Later today, the specialist put him to sleep, pulled three of his teeth, and put dental bonding on the rest of them.

We have an appointment with the doctor for another check up in six months, but we think we caught it in time – hopefully.

Bernie’s a little groggy this evening, but at least I know how he feels.

Still here

I’m still here; just zonked out from the anesthetic they use when doing a bronchoscopy. I’ll tell you about it later.

 

Off to Shands

Harriet and I will be getting up early tomorrow. We have to be at Shands at 8 a.m. for a follow-up bronchoscopy. The doctors will be looking to see if we fooled my immune system and the rejection is gone. They know about the fall last week, of course. They know everything. So, the plan is that while I’m still in LA LA Land they’ll also take the staples out of my head.

Once we get the results, I’ll post it here.

Crash!

I didn’t write here Thursday because I slipped and fell down the three steps from our living room to the bedrooms area and ended up in the emergency room. Several hours later, after a CATscan of my head, face and neck, they set me free with two staples in my scalp. Ouch!

I told Harriet that maybe I should fall down more often. This morning my FEV1 was 4.44.

The Come Back Kid 2

That’s 2 as in sequel. My FEV1 is up again this morning. I huffed and puffed and blew a 4.25. Don’t tell Harriet, but I may celebrate with a martini (just one) this evening. Did I tell you we have a sign over our bar? “It’s 5 O’clock somewhere.”

Bernie has one over his dish in the kitchen: "It's dinner time somewhere."

The Come Back Kid

Wasn’t that the name of a movie? This is not up there with Hollywood, but my FEV1 is continuing to climb. This morning it was 4.21. The predicted lung function for a man of my age and overweight is 2.88. That’s means I’m at about 146% of what the doctors would predict. At 69 I’m no kid, but I’d say that’s a fair come back – so far.

Bernie just looked up at me from his bed by the computer. I think he agrees. Or wants to go for another walk.

In the morning

After I’ve thrashed around all night, things rarely seem as bad as they did when I went to bed. A case in point is my FEV1 (that’s lung function for those who don’t speak Transplant). This morning mine was 4.18, up from yesterday’s 4.12.

I only voted Democrat once in my life; the first time I voted in a Presidential election. Still, there have been some good thoughts from that side of the road. “The Buck Stops Here” sign that Harry Truman put on his desk, for example. And something FDR said in his first inaugural address that I keep trying to keep in mind:

“The only thing we have to fear is fear itself.”

Fighting fear

Harriet is off to LA for a week. I’m glad. She’ll have a chance to personally re-connect with the people she works with everyday on the Internet. She’ll also have an opportunity to spend time over dinners and perhaps some Guerrilla Gardening with Rebecca and Mark.

I’m sure she won’t tell the kids my FEV1 has started back down again. There’s nothing they could do anyhow. And I’m worrying enough for everyone. That’s another reason I’m glad Harriet’s gone. She doesn’t put up with groaning. Or more than one scotch.

Who's looking to you?

When Bernie and I took our last walk this evening, a storm was moving in from the coast. He didn’t notice the clouds gathering or the wind picking up, but the distant thunder was another matter. His ears pulled back, eyes wide; he turned his head and looked – not at the darkening sky, but at me. When I just kept walking, that was enough for him. He went back to the lizard hunt.

As he so often does, Bernie had me thinking again. Are there others looking to me, waiting to see how I react? It’s something to keep in mind the next time a storm comes rolling in.

Being Green

Something happened yesterday that reminded me of one of my long time favorites; a beautiful tribute to accepting who you are and making the most of it. Did you know Being Green was written for Kermit by the Cookie Monster? True. That was one of the characters composer Joe Raposo played on Sesame Street. Did you know Frank Sinatra covered Being Green on his “Ol’ Blue Eyes is Back” album? I’ve got a copy, one of those round vinyl things they used to call records.

Anyway, we’ve been Being Green around here lately. Yesterday we had a solar panel installed on the roof. I don’t believe in global warming. And I don’t think mankind is affecting the weather on this good earth. But I do believe in going green when the green ends up in our pocket. Our new solar powered water heater is going to save us 30% on our electric bill.
I encourage you to look into it for your home now that the county, state and federal governments as well as the power companies are offering incentives.

Mad dogs and Englishmen

We did it again today, with not much to think about; just getting our exercise. And proving the lie to Mr. Coward. Bernie’s a brainiac and there’s not an English bone in my body.

 

Lucky 13

Today is the 14 month anniversary of my bilateral lung transplant on May 13, 2008. It’s the kind of occasion that often leads to looking back, reminiscing about what’s happened since the big date. I choose the opposite. I’m spending the day thinking about what comes next; making plans for where this new life will take me.

 

The Rejection Blues

If you’re anything like me, transplant rejection is something you worry about; a niggle hiding in the back of your brain waiting to jump out and bite you. As you know, I got bitten a couple of weeks ago. For those who haven’t had an episode yet, I’d like to take some of the sting out of the bite.

When you review this treatment schedule I followed so far today remember I’m in acute rejection.

8:00 a.m.

Roll out of bed, shower and dress – jeans, tennis shoes, and T-shirt

8:10 a.m.

Go to the kitchen, feed Clementine (the Orange Tabby) and Bernie (the Good Listener),

8:15 a.m.

Do my morning tests: temperature, blood pressure, blood sugar, FEV1 (it’s up to 4.19)

Take morning meds including an additional 20 mgs prednisone – on the way down from 60 mg to my basic 5 mgs every other day.

8:30 a.m.

Put Bernie’s e-collar on him and go for our morning one mile walk. We didn’t encounter Kid Rabid, but there was a black cat and seven of the five foot tall Sandhurst Cranes on out the golf course. Bernie heeled right past both distractions.

9:00 a.m.

Have breakfast of orange juice and a toasted bagel with cream cheese, onion, capers, and smoked salmon.

Read the Orlando Sentinel and Wall Street Journal.

10:a.m.

Take last week’s newspapers and soda cans to recycle drop-off locations. Collect $2.49.

10:20 a.m.

Secretly visit my mother at Life Care Center (Don’t tell Harriet or the transplant coordinator. They’ll yell even though I wore a mask)

10:40 a.m.

Drop off my shirts at the cleaners.

11:00 a.m.

Do grocery shopping at Publix (wearing my mask and using disinfectant wipe on the cart).

11:45 a.m.

Put away groceries at home. Nag Harriet for being out in the sun pulling weeds ever since I left. Repeat, once again, the old adage, “Only mad dogs and Englishmen go in the mid-day sun,” while she pays no attention.

12:15 p.m.

Go to Costco and do the bulk shopping – wine, steaks, feta cheese (for Greek salads), Kleenex. Two Addidas T-shirts jump into the cart. Well, I do a lot of walking.

1:15 p.m.

Have lunch of pita chips and shrimp salad from Costco with Harriet. She swears she’s done in the yard and is going to work on her puzzle all afternoon. And, believe it or not, she does.

2:00 p.m.

Forget the old adage. Bernie and I take a walk down to the lake.

That only takes us to mid-day. But I think it makes the point. Rejection doesn’t have to take over your life. It doesn’t even have to get in the way. No SOB (No not that! It stands for short of breath), no turning green, no woe is me.

Virtually every transplant recipient will experience rejection at some time. Listen to the transplant team. Do as they say. And, these days, it’s no big thing.

Rain

It rained nearly all day here in Central Florida. After a breakfast of bacon and eggs and Harriet's homemade biscuits, Bernie and I got our long walk in before it began. And we braved the drops for another two short ones later. But most of the day we just rattled around inside; me noodling the computer and sneaking snacks, and him in his bed beside the Dell accepting bribes so Harriet wouldn’t know. Remember prednisone makes you want to eat the couch.

For lunch Harriet fixed a couple of her great Greek salads. I finished mine off with two of those little Clementine oranges I found at Publix and a Granny Smith apple while I watched part of Tora Tora Tora.

Tonight, we’re having Costco’s filet mignon and Harriet’s twice baked potatoes as a going away dinner for Michael and Lisa. They head back to his mom’s and dad’s place in Virginia on an 11:30 a.m. flight tomorrow.

All in all everything turned out fine. As I’ve said before, sometimes it’s a good idea to just let the day slip by.

P.S. Did anyone notice that this entire blog was about food?

Up and Down

My FEV1 (lung capacity) continues to rise. This morning it was up to 4. 21.

On the other hand, I had a downer this morning. On our morning walk, Bernie and I ran into “Kid Rabid.” It’s a tabby kitten that actually stalks him as if it’s going to attack. Unlike himself, the friendliest dog in the world, Bernie backed up into my shadow. It made me wonder if he was afraid…and if I was.

I don’t really know much about acute rejection. The question I’m asking the transplant coordinator tomorrow is the one I’ve been avoiding. I know my immune system has attacked my new lungs, but are they going to be permanently damaged?

Going up...

My FEV1 was up to 4.16 this morning, more than 120% of what would be predicted for a man of my age and weight. It’s amazing. A simple thing like how much air you can blow out in a second can truly buoy your spirits.

I'm not going the tempt the fates and joke about what they call this thing. But, so far, it's not as ugly as I feared.

My grandson Michael and his bride, Lisa, arrived this afternoon for a few days visit. That’s another up

Going down...

This morning I’m down to 55 mgs of prednisone, tapering from 60 mgs to my base of 5 mgs. My blood sugar is down to167. My temperature is down to 96.5. Bernie is flopped down on his bed next to the computer. The only thing that’s up is my FEV1. All is right with the world.

Happy Fourth of July!

An ending and a good start

I had my last IV drip of Solumedrol this afternoon. Bernie and I took a walk down to the lake before the home nurse arrived. We knew it might be while before we could again.

I mentioned that Solumedrol is Prednisone on steroids. Strong stuff. It’s used to treat everything from MS, leukemia, colitis, arthritis and gout to an array of respiratory problems. And it has just about as many side effects. It can give you a burst of energy right after the treatment and then fifteen minutes later you’re on the couch half asleep. You might also have to deal with dizziness, nausea, weakness, mood changes, increased appetite, and weight gain to name a few effects.

Sort of like falling in love.

Luckily, and quite possibly because I have twenty years history with Prednisone and this hyped up version, I’m usually able to duck most of these problems. Still, it’s best to play it safe for a while after a treatment to make sure. And I do.

But enough about the end of the first step in my rejection treatment. Today was another good start. On our walk to the lake Bernie and I saw the teenage girl sitting on the wooden bench again. And she was reading. Bernie wanted to talk to her, but I voted against it. These days it’s something you seldom see. A young person actually reading a book, a snapshot out of a culture I’m concerned we’re losing, much to our detriment. I didn’t want to disturb the picture.

Oh, and her cell phone didn’t ring.