Afterthoughts

Shands -- the bad and the good

2009-10-28T15:49:00.001-07:00

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

2009-10-27T15:39:00.000-07:00

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

2009-10-25T15:36:00.001-07:00

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

2009-10-22T15:34:00.000-07:00

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

2009-10-16T15:14:00.001-07:00

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

2009-10-15T07:33:00.001-07:00

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

2009-10-12T15:26:00.000-07:00

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

2009-10-07T16:04:00.000-07:00

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

2009-10-06T14:54:00.001-07:00

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...

2009-10-03T20:05:00.000-07:00

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

2009-09-29T10:54:00.001-07:00

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

2009-09-27T14:39:00.001-07:00

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

2009-09-26T10:04:00.001-07:00

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

2009-09-24T10:53:00.001-07:00

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

2009-09-21T13:56:00.000-07:00

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...

2009-09-19T16:28:00.001-07:00

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

2009-09-18T08:32:00.001-07:00

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

2009-09-15T13:18:00.001-07:00

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

2009-09-12T21:24:00.001-07:00

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

2009-09-11T19:22:00.001-07:00

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

2009-09-10T20:56:00.001-07:00

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

2009-09-09T15:35:00.001-07:00

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

2009-09-08T15:56:00.001-07:00

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

2009-09-07T14:38:00.000-07:00

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...

2009-09-04T15:39:00.000-07:00

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?

2009-09-02T16:35:00.001-07:00

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...

2009-08-26T16:21:00.001-07:00

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

2009-08-25T16:15:00.001-07:00

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

2009-08-24T13:45:00.000-07:00

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

2009-08-19T17:02:00.001-07:00

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

2009-08-14T15:13:00.001-07:00

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

2009-08-12T13:59:00.001-07:00

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

2009-08-05T16:06:00.000-07:00

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

2009-08-04T14:08:00.000-07:00

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

2009-08-01T14:43:00.001-07:00

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

2009-07-31T14:49:00.000-07:00

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

2009-07-30T16:41:00.001-07:00

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

2009-07-29T06:37:00.001-07:00

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

2009-07-27T19:11:00.000-07:00

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!

2009-07-24T12:58:00.001-07:00

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

2009-07-22T12:46:00.000-07:00

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

2009-07-21T13:37:00.001-07:00

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

2009-07-20T13:34:00.001-07:00

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

2009-07-19T15:11:00.001-07:00

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?

2009-07-17T16:07:00.001-07:00

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

2009-07-16T13:06:00.001-07:00

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

2009-07-14T14:31:00.001-07:00

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

2009-07-13T05:52:00.001-07:00

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

2009-07-11T13:42:00.001-07:00

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

2009-07-08T15:31:00.000-07:00

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

2009-07-07T14:50:00.001-07:00

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...

2009-07-05T13:26:00.001-07:00

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...

2009-07-04T08:07:00.001-07:00

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

2009-07-02T15:47:00.001-07:00

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.

Unoffical report on bronchoscopy results from 6/26/09

2009-07-01T14:44:00.001-07:00

“Halt! Who goes there?”

(A slightly nervous chuckle) “What?

“You heard me! Identify yourselves.”

“Who are you?”

“CIA, Central Immune Authority. Now answer my question!

“I…I’m left lung.”

“And I’m right.”

“What are you doing here?”

“Our jobs.”

“Which is?

“Ah…keeping everything else going?”

(Nodding, with a cynical downturn of the mouth) “Yeah, that’s what all the aliens say; bacteria, viruses, mold, tumors.”

“Wait. Where are you going?”

“Where do you think? Back to lymphoid headquarters. But don’t worry; I’ll be back with a wrecking crew.”

I hope everyone gets the point of that fun little drama. It’s simple: acute rejection doesn’t have to be dramatic.

The encounter described in the drama happened sometime in the middle of June and led to my first episode of acute rejection. The actual date and time is undoubted lost in the mists of bodily functions. How it took place we know. For some reason, my suppressed immune system suddenly recognized the lungs which had been transplanted 13 months earlier. But why is a question we’ll probably never answer. A number of things could be responsible, either wholly or in combination.

It could be because of a misunderstanding we had about a change in the level of Prograf, a key immunosuppressant, the doctors ordered. I could have picked up a bug which aroused the immune system; in the emergency ward of the hospital where I sat with my mother for several hours, in the nursing home we’ve moved her into, or just walking through the supermarket. It could be related to the high level of stress I’ve recently been under with Harriet having a kidney removed, and my mother’s situation. On the other hand, it could be just another one of the mysteries of organ transplantation waiting to be solved by science. The flappett melted into the dogget before the ramicin took effect.

So what happens now? That’s the other subject I want to cover here. Before someone else who’s worried about rejection freaks out, I think it may help if I detail what is happening to me. Here goes.

The acute rejection was confirmed this past Monday. Later that morning a transplant coordinator from Shands called me and gave me the news, answered my questions, and explained what was scheduled.

1) Three IV treatments of 1000 mgs of Solumedrol (methylpresdnisolone), one each day for three days.

2) A prednisone taper from 60 mgs to 5mgs over 11 days.

3) Return to Shands in a month for another bronchoscopy.

The medications were delivered Tuesday morning. A couple of hours later a home nurse arrived, put in the IV, and gave me the treatment which took under an hour. Then she smiled and was on her way.

This morning I smiled when my FEV1 which had fallen to 3.66 was already back up to 4.14. I’m not getting carried away, floating off into the clouds. The stuff I’m taking is prednisone on steroids. There are side effects. But I’ve been there before. I also know it’s going to take some time to get back to where I was. But I have every reason to believe I will. In fact, I’ve got a feeling that by the time that guy from CIA got back to headquarters he wasn’t quite sure why he was there.

Rejection is going to happen, but as I said, it doesn’t have to be dramatic.

P.S. For anyone wondering what Bernie thought of all of this, he looked at me all day on Tuesday with a cocked head as if he sensed something was wrong. Then Wednesday morning, setting an example as he is wont to do, he took me for our regular morning walk like nothing was amiss. Another day, another lizard.

Hurt feelings

2009-06-29T13:59:00.001-07:00

We’ve all had them at times; bumps in the emotions road that hurt. Most often they come from an offhand comment or an unthinking remark never meant to sting. But sometimes it can be hard to get them out of your system, to stop reacting. I think that may be especially true of people who’ve been through a transplant or any traumatic experience for that matter. You can get fairly tightly strung.

I have to admit to a couple of bumps myself. One I’m still reacting to everyday, the other I’m afraid I can’t do much about.

Every morning when I get dressed I check twice to make sure my belt is through every loop in my pants. That’s my way of dealing with something my daughter explained to me years ago when I missed a loop. “Dad, you look like an old man.” I’m not sure it assures me of eternal youth, but it dampens the hurt.

However, every time I think about something my wife said years ago – which is not very often -- I can only close my eyes and wince. We’d just come back from a lunch with a fraternity brother of mine who was obviously declining, losing a long battle with cancer and the bottle. Leaning against the kitchen counter, fooling with the wooden spoons in our Harriet’s Kitchen crock, I worried something under my breath about how thin Jerry looked.

From behind me, with a slight chuckle, obviously meaning to relieve my concern, Harriet said, “Well, you don’t have a butt anymore.”

My advice, once again, comes from Bernie who lives in the moment. And a thought for the day I sent to some other folks: Today is a gift. That’s why it’s called The Present.

The Long Goodbye

2009-06-28T12:29:00.001-07:00

We’re spending time this weekend getting my mother situated in a long term care facility. It’s the best of several we spent time checking out and not far from our house so we can visit often. As many of you know, it’s a draining experience. You want the best for them in this time, and you hope you’re doing the right thing.

Harriet and I are home for a few hours now before we return late this afternoon. It gave me time to finish writing a poem I started some time ago.

The Long Goodbye

A mystery even Chandler’s Marlowe

Couldn’t solve

With no reason or rhyme

A crime of the mind

Someone taken from you

But still there

The soft silken hair

The same beautiful smile

But an empty stare

Sweet and Sour News

2009-06-26T16:39:00.001-07:00

People involved in the transplant experience, whether pre or post, get used to having this unusual dish served to them; half with a spoonful of sugar on it, the other half with a lemon squeeze. Maybe you recognize one of these examples:

It’s definitely not pneumonia…but we don’t know what it is.

The EKG indicates that you have atrial fibrillation…but it’s not life-threatening.

Your oxygen saturation level has improved to 94%...but your blood pressure is 160/83.

You’re finally on the “list”…but it could be at least six months before you get the call.

You’ll never have to be on oxygen again…but you’ll have to be on these 15 meds the rest of your life.

You can go anywhere you want to go…as long as you wear a mask.

I got my serving of Sweet and Sour today. After my bronchoscopy at Shands, while I was still in Goofyland, Dr. Akindipe spoke with Harriet. He told her there was nothing to indicate any rejection…but they couldn’t be positive until they had the lab report on Monday.

On a completely positive note, with a helping of tail-waggin’ (it’s even sweeter than sugar) all over it, we got back in time for me to take Bernie on a walk down to the lake.

Another day, another lesson

2009-06-25T14:27:00.001-07:00

This one has nothing to do with Bernie. Over the last few days, I’ve seen a rather dramatic downward slide in my FEV1 (Forced Expulsion Volume).That’s the measure of my lung function I take each morning.

Nothing else is awry. My temperature this morning was 96.9, blood pressure 111/65 and heart rate 59. As usual, Bernie (okay, he’s involved, but he’s never more than a pounce away) and I walked a mile before breakfast and I wasn’t winded at all.

Still, when the FEV1 drops, something’s up.

It could have to do with my recent late night stay in the hospital at my mother’s side. Or one of the other non-recommended activities this old blockhead tends to engage in without a mask; going out to lunch, grocery shopping, etc. Or a slowdown in the number of times I use Purell to sanitize my hands when I’m out or even at home. With my immune system compromised, I could have picked up a bug doing any of those things.

It could also have to do with a misunderstanding we’ve since corrected on the daily dosage of Prograf, one of the immunosuppressant medications I take. Or it could be just a rejection hiccup in the struggle of my body to throw out this intruder which most transplant recipients experience at least once in their post-op lives.

Whatever it is, we’ll soon know. Harriet and I are on are way to Shands early tomorrow morning where I’m going to have a bronchoscopy – that neat thing where they sick a camera down your throat into your lungs while you're asleep. When we find out what’s going on, so will you.

Oh, I almost forget to include the lesson. Never get too confident.

Take time for yourself

2009-06-24T15:47:00.001-07:00

The weather here in Central Florida has changed dramatically. The high today was predicted at only 93 compared to yesterday’s 98. So, Bernie and I were able to get in a few more walks. On one of them this afternoon we came across a familiar scene. As we turned the corner and started down the road along the lake, we saw a teenage girl I’d guess at 15 or 16 years of age sitting on the hand made bench that someone long ago placed there. She was alone, reading a book.

Bernie wanted to say hello, but I gave him a quiet, “No.” He turned to look for something else of interest and we passed without interrupting the girl. The incident had me musing about something I recently read that someone as revered as the Dali Lama favored. Everyone, especially transplant recipients, should set aside some time to spend by themselves.

And then her cell phone rang.

Addendum to Children's Day

2009-06-23T15:10:00.001-07:00

I’ve had a chance to re-think Children’s Day. Perhaps we should make this new holiday a weekend event; one day for the boys, and another for the young ladies. Heavens knows, they’re different. Mother Goose reminded us what they’re made of…snips and snails and puppy dog tails…and sugar and spice and everything nice. And as they grow, the differences grow with them.

As a father, I’ve been able roll with the boy’s punches, knowing they were coming. But the girls are another story. As this recent poem shows, I’m still trying to work it out.

Daughters and Fathers

He would do anything for her

But what she wants him to do

Is nothing

And he has to live with that

He has to keep his thoughts to himself

His eyes closed, his voice silent

Any action on hold

And pray for her to call

That’s what fathers do

When not to exercise

2009-06-22T11:16:00.001-07:00

This morning, to take Bernie on his first walk, I slipped on a fresh T-shirt off the stack of laundry my wife did yesterday. When we came back, 20 minutes and three quarters of a mile later, Bernie’s tongue was lolling out the side of his mouth and the T was soaking wet. I tossed the shirt in the washing machine and cut another notch in my lesson stick.

It’s a good idea to read the paper or listen closely to the radio before you go wandering off on your exercise routine. The forecast high temperature in Central Florida today is 97 degrees. And with the predicted 65% humidity factored in, it will feel like 108 degrees.

Transplant recipient or not, I suggest you take the advice I gave Bernie borrowed from a Noel Coward song: Only mad dogs and Englishmen go out in the midday sun.

Children's Day

2009-06-21T13:55:00.001-07:00

I suppose we don’t have an official one because, for most of us, every day is their day. But maybe we should think about it; a special day when we celebrate the incredible gift they give us with their lives. We could even make it a worldwide celebration. It might be a tough sell in some places, but maybe we could use this pitch: without them, Father’s Day wouldn’t be much. Well, I think it’s worth considering.

In the meantime, I’d like to offer up a few poems my children have inspired me to write.

The Lemonade Tree

Have you ever found a miracle

Growing in your backyard

I did yesterday

It seems my daughter planted it

Just by wishing hard

For a game to play

I know this sounds ridiculous

To adults like you and me

But for one moment

When she said, “Daddy look,

A Lemonade Tree!”

I thought I saw it

I thought I could feel the coolness

Of a leafy sweet shade

Hiding the sun

I thought I could taste

The sour of lemons

And the sugar of fun

Of course, you and I know better

There’s no way to grow

A Lemonade Tree

What I saw and felt and tasted

Was a child’s mind aglow,

The joy of being three

But still, there was a miracle

In my yard yesterday

No Lemonade Tree

But a miracle just the same

For a child at play

Touched the child in me

The Monster in the Hall

I’ll always remember that giggle

From the bedroom

When I played the monster,

Growling and gruffing

In the hall

And sometimes when I pass that way

I listen for a moment and remember

How to smile

Newberry Summers

Like faces in the misty light

Visitors from Rome

Come sailing home in arks

Full of Kermits and kangaroos,

Drawing dreams of bubble gum

And baseball in the sleep heads

We put to bed at night.

And, for a time,

The world is warm again

In the soft embrace

Of our Newberry Summers

Questions

Do you want to be a big girl?

No.

Don’t you want to be like mommy?

No.

Do you have to go potty?

No.

Won’t you even try?

No.

Are your pants wet?

No answer.

A lesson for Bernie

2009-06-20T16:04:00.001-07:00

As usual, on our first walk this morning, Bernie and I went down to the lake. We stopped for a while and watched a foursome of early morning golfers teeing off on the first hole. While we were standing there, something big sploshed a few yards out in the water.

I pointed at it and said, “Look, Bernie, a bass!”

As you may know, the common belief is that if you point, a dog will look at your finger. Bernie is not a common dog. His eyes followed my finger to the spot on the lake that was still rippling. And at that moment a rather large, black Cormorant stuck its head up out of the water.

So, today both of us took something away from our walk. Bernie learned that a bass is a large black bird. I was once again reminded that things are not always as they first appear.

Another lesson learned

2009-06-19T07:23:00.001-07:00

I had a chance to experience the gritty side of being a care giver on Wednesday evening. My 91 year-old mother has Alzheimer’s disease and lives with us. On Wednesday she had what’s sometimes called a Sundowner episode and ended up falling while trying to climb out a bedroom window. We called 911 and the paramedics took her to the hospital. At ten o’clock that night I insisted Harriet go home. From then until 2 a.m., I sat by my mother’s bed in the emergency ward, trying to keep her from pulling out her IV, to calm her down, to understand her mumbling.

As you can imagine, I went home exhausted when they finally got my mother admitted. But with an enhanced understanding of how much strength my wife has to have cared for me through all those bad years.

Simplifying complicated medical terms -- continued

2009-06-17T11:09:00.000-07:00

I said this would be the really good part of this entry, and it will. But I have to confess something before we can get to it.

I wasn’t very clear in my previous mentions of Harriet’s medical problem for a reason. Despite a battery of echocardiograms, CT scans, ultrasounds, mammograms, and MRIs, no one was completely sure of the situation.

It started with a visit to the emergency room with pain in her back and chest. After a CT scan and an EKG, we were relieved to learn that her heart was fine. However, the radiologist had pointed his equipment a bit lower than normal and noticed something else; a spot on her kidney and another one on her liver. Since Harriet is a breast cancer survivor this instantly got everyone’s attention.

To shorten this story which included what seemed like a hundred tests, the spot on her liver turned out to be a simple hematoma – nothing more than a blood blister. However, the mass on her right kidney appeared to be a renal carcinoma…cancer. The only way to be certain was a biopsy. But the superb urologist I mentioned earlier on this subject recommended against it. Cutting into the tumor could cause it to spread.

Without hesitation, we agreed to his suggestion: remove the whole kidney.

So, now you’re up to date. Harriet had the surgery two weeks ago and is recovering remarkably well. On Monday we went to her urologist and he gave us the lab results. The mass on her right kidney was a multilocular renal cystic tumor with mixed epithelial and stromal cells. We started to feel a little better when he described it as…weird. Neither he nor any of his associates had ever seen this rare tumor. He explained a bit more. It’s sort of like an intestinal tumor, but not. And sort of like an ovarian tumor, but not.

Finally he simplified it all the way down so anyone could understand: not malignant.

Simplifying complicated medical terms

2009-06-16T12:56:00.000-07:00

Let’s start with me. As I think I’ve mentioned, I was diagnosed with COPD in 1990. The doctor took pity on me when he saw the dumbfounded look on my face and explained: the acronym meant Chronic Obstructive Pulmonary Disease. When my look didn’t change he went on to nail it down. I had a combination of chronic bronchitis and emphysema. That at least gave me something to look up in the dictionary. Remember this was B.G – Before Google.

I discovered that chronic bronchitis is an inflammation of the mucous membrane of the bronchial tubes in the lungs. Emphysema is an abnormal increase in the size of the air sacs in the lungs, resulting in labored breathing and susceptibility to infection.

I also discovered that the great majority of COPD cases (80% to 90%) are the result of a prolonged habit of smoking. And I finally had a simplified definition of my disease that I could understand.

With a father who died of lung cancer at age 53, and a personal smoking habit that lasted nearly thirty years, peaking at three or more packs a day, I was a victim of Duh!

(To be continued in tomorrow’s blog – with the really good part!)

Quiet Sunday

2009-06-14T12:48:00.001-07:00

We spent the day doing nothing. Harriet is still recuperating and lounged on the couch playing spider solitaire on her computer. Bernie and I took a couple of walks without really talking about anything, just enjoying being together. At lunch the two of us hopped in the Mustang convertible (he loves it with the top down) and picked up Wendy’s for everyone. While I’m writing this, I can hear an old western on one of the movie channels playing in the living room, where I suspect my mother and Harriet are snoozing. Tonight we’re having the clam chowder one of Harriet’s friends brought over on Friday.

It’s a great way to spend the day; at least once it a while.

Lucky 13

2009-06-13T14:49:00.001-07:00

Today, it has been one year and a month since my bilateral lung transplant, and all is well. I know some recipients have problems within the first year; medication complications, infections, even rejection. But I've been lucky.

All I've had is a fever sore.

I had another attack today

2009-06-12T14:42:00.001-07:00

Bernie and I were at the halfway point in our last walk of the afternoon. Across the lake, a foursome of golfers were teeing off, trying to squeeze in a round before it got too dark. A mama duck and her brood of five little ones were climbing up onto the grass under a willow as protective mama. The spraying fountain in the middle of the lake was shushing the day, ushering in evening. A towering cumulus shielded all but the longest rays of the sun as it climbed down the ladder into night. A lizard had Bernie’s attention, but he was firm in his Stay. I looked up and saw the contrail of a heavy on its way somewhere west and took a deep breath.

And the questions poured over me once again. Why me? Why am I alive and not someone else? Who am I now? Who gave me this new life? What am I to do with it?

Then Bernie broke his Stay and dove for the lizard. Thank God. On the walk back to the house, with his excited interest in everything we walked past a few minutes ago, Bernie reminded me that he lives in the moment, not worrying about the past or future. And how wise he is.

Lunch with Bernie

2009-06-11T14:09:00.001-07:00

No, no. I don’t mean that Bernie. I’m talking about the man he’s named after. Bernie Bullard was a student of mine at Michigan State. Later, I hired him to work in the marketing department at Walt Disney World, and he went on to become one of the key executives at Tokyo Disneyland. In the process, what began as an instructor-student relationship turned into friendship. One of those “like it was just yesterday” things -- no matter how long it’s been since you’ve seen each other.

And it has been a long time. For two reasons: my illness-induced hermit’s existence and the fact that Bernie was half a world away.

Before my transplant I heard that Bernie had retired and returned to Orlando. Shortly after I got home from Shands, we actually had a chance to have a drink and a chat when he and another friend from the Disney days, Dave Pritchett, stopped by to make sure I was still alive. I’m fairly certain they were amazed by my post-transplant vigor. Not only was I not in bed or pasty white, I had two glasses of wine.

That short get together was nearly a year ago. So, you can understand why I was a bit nervous to – as my care giver suggested – reach out. But I’ve learned that she’s almost always right. And so I did.

Bernie answered my email within a couple of hours. Lunch was set for early the next week. And you saw this coming; when we met at Dexter’s our conversation picked up it like it was just yesterday when we last shared our lives. The lesson here of course is that your friends are not lost. You were. Now you just need to knock on the door, let them know you’re back.

I also learned another lesson at that lunch. It turned out that Bernie had a lot on his plate; three kids, a troublesome ex-wife, an upcoming marriage, a consulting job due. For good reasons, we’ve seen very little of each other since then. But that doesn’t mean his is the only door to knock on. There are others out there waiting to hear you’re back. Give them a shout.

Lost friends

2009-06-09T15:03:00.001-07:00

This is another before and after entry.

One of the sad things that happen when your life gets put on hold by illness is that you lose your friends. Not because either of you stop caring, but because you shut down -- a cell phone with almost no bars, a clock with failing batteries. It becomes more and more difficult to go anywhere, do anything. They call, of course, and stop by to visit sometimes. But they’ve got a life to live. You understand that, and when the time between the calls and visits grows, you’re actually relieved because your condition embarrasses you.

As the weeks, and months, and years pass the connections fade until you’re essentially alone with your care giver. On the loving island she or he built for the two of you. And that is enough.

Then one day, quoting from a poem someone I know wrote, you find yourself “Waking up Dreaming” that the bad days are over. And they are.

It’s not until later that you grow lonely, and start thinking about friends, thinking that in this new life you don’t have any. It’s been years since you had lunch with anyone, even longer since you joined a group at a bar or party. You've kept in touch via email with a couple of people; one in Australia and another across the country in Los Angeles, but that old saw absence makes the heart grow fonder doesn't hold much water. And then someone smarter than you says... Try reaching out.

I’ll give you the result of that effort in the next blog entry. In the meantime, I hope you enjoy the poem I mention earlier.

Waking Up Dreaming

I used to dream

That someday I’d wake up

And still be dreaming

Doing something I could never do

Better than leaping

Tall buildings in a single bound

Or meeting E.T.

Or even winning the lottery

Then one day I went to Gainesville

To see the Wizard of Baz
Now every morning I’m

Waking up dreaming that same dream

That I can take a deep breath

And I can

Walking on water

2009-06-08T14:46:00.001-07:00

On one of our afternoon walks today Bernie and I saw several ducks sitting in the grass at the lake’s edge. He wanted to go after them, but I told him they’d just fly or go out on the water – and he doesn’t do either.

He listened to the dog whisperer, of course. He almost always does. But the encounter reminded me of a good Bernie story. Soon after we got him at four months old, Harriet had him with her out in the pool area. We have a rather large pool; 20 X 40 feet. Bernie was investigating, walking around the edge of the pool, checking out the plants and lizards. At the first corner he came to, he stopped. He eyed the water, looked at the L-shaped decking and decided to take a shortcut – and walk across on the water.

Harriet helped him out, but he hasn’t been swimming since.

These days, it seems to me that more than a few folks in Washington have the same misconception Bernie did. And the rest of us are going to have to take Harriet’s job. Of course, we could just drain the pool.

Another thing to smile about

2009-06-07T09:19:00.001-07:00

Summer has returned to Central Florida and with it the afternoon thunderstorms. It’s a chance to do something I haven’t been able to do in a very long time. I can’t sing like Gene Kelly, but I like walking in the rain.

As I said...

2009-06-03T18:11:00.001-07:00

…something good happens everyday. Harriet’s surgery went well without any complications, and she is recovering nicely.

It's always the little things, isn't it?

2009-06-02T16:02:00.001-07:00

You think you have everything under control, and then some little thing comes along and knocks you off your high chair. In my case it was a post card from our son Mark who’s the drummer in Malbec, an LA band that’s often described as Coldplay on steroids. They’re on tour now and the card was from New York.

It was addressed to my wife, Harriet. I read the card and was excited to learn how well the tour was going. Then I looked at the salutation again; in Mark’s unique hand it read, Mom…just Mom.

I stared at the card for what seemed a full minute, then sighed and laid it on the kitchen counter. As I was beginning to feel sorry for poor old forgotten dad, it suddenly dawned on me. That wasn’t the first postcard we’d gotten from Mark. The first one was from Indiana. That was the one where he apologized to Harriet for not sending her a Mother’s Day card and promised to make up for it with a bunch of postcards from the tour.

I chuckled and walked into the hallway where I could look myself in a mirror and repeat a mantra my daughter has taught me: It’s not all about you.

A real confidence builder

2009-06-01T13:31:00.001-07:00

With a loved one facing surgery, no matter how serious or benign, you reach out for some reassurance that it will be a positive result. No problems.

Today, I got the best kind of boost to my somewhat shaky (I tend to hypochondria) confidence. I wrote a short note to the pulmonary doctor who helped me survive my COPD long enough to get a transplant. Because we’ve known each other a long time and have become friends, I thought he’d like to know about Harriet’s upcoming surgery. He wrote back asking the name of Harriet’s urologist. When I told him, his response completely erased my nervousness.

“He’s superb! She’s in good hands.”

The big Why -- at least one of them

2009-05-31T16:51:00.001-07:00

Why did this happen to me?

I don’t mean why I got the transplant. That’s clear as Culligan Water; because I smoked and developed COPD. I was sick enough to need a transplant and, in the opinion of the doctors, a good candidate to survive it. And the health care I needed before, during, and after the transplant was covered by my wife’s insurance through her employer.

I don’t mean why I decided to get a transplant, either. I’m reminded of that every time I open the Shand’s Adult Lung Transplant book I keep my daily records in. It’s on a note I wrote to Harriet while we were still staying at the Camellia Rose Inn during my recovery: I got the transplant because I wanted to spend more time with you.

I mean…why me? Why did I get a second chance?

As I wrote in last year’s Christmas card I now believe for certain that there’s a hand behind our human existence. And there is a reason why I’m still here, something I need to do. When we discovered my mother has Alzheimer’s and moved her into our house, I thought I felt that hand. This spring when I had the opportunity, through the American Lung Association, to speak to high school students about the dangers of smoking, I felt is again. Now, I think those were just warm ups to give me confidence. I’m sure there are a lot of reasons I’m still here, but none more important than the next one. I have a chance to be care giver, at least for a few weeks, to my care giver.

If you’re a reader of this blog, you’ll know that Harriet, my wife, recently had good news about an MRI. The spot on her liver turned out to be what her doctor called just a blood blister. It was a great relief to us because she has already been diagnosed with a small renal carcinoma on her kidney. Now we can look forward to her surgery this coming Wednesday to remove that kidney, and any chance that the cancer can spread. Without going though radiation or chemotherapy. She should be out of the hospital in five days --and in the hands of nurse Larry. Afterall, I said I wanted to spend more time with her. :)

Since I mentioned the 2008 Christmas card, here’s what I wrote:

I always wondered about miracles;

Christmas, Easter, the Universe.

This year I saw one up close.

Small to be sure

But I have no question now

There is a hand behind

Our human existence

And I have been lucky enough

If for only a moment to be cradled

In His loving embrace

What goes around...

2009-05-30T14:34:00.001-07:00

Back in April I wrote on this blog about a wedding reception and a story my wife told a group about giving her last dollar to a co-worker of hers at Universal. At the time, the story almost had me in tears. I didn’t know about it; she hadn’t told me because I was sick and out of work, and we were in financial straits. I got though it when I realize she’d called it a funny story which meant she was past those bad times. And I had to get past them too.

As the adage goes, it came around last week. Out of the clear blue sky, my wife received a huge bouquet of flowers and 18 one dollar bills from Universal Singapore where that old co-worker is now employed. He’d written a note in the card:

Payback time.

That story meant more to me than you ever know.

Thanks for the loan -- 18 years later

Something good happens every day, doesn’t it?

Good news...

2009-05-29T11:13:00.000-07:00

Sometimes it comes in a simple phone call. The nurse said the MRI showed that it was just a (insert long word here) like the doctor thought it was. No cause for alarm.

Yes, Ma’am (Insert long sigh here). But it sure is cause for a martini or a glass of wine or…at least a WHOOPEE!

The message for me here is a reiteration of a few words of wisdom from Harriet's mother, Granny Smith: Don't worry until you have something to worry about.

By the way, it was Harriet's MRI.

You smell...

2009-05-28T12:04:00.000-07:00

That’s what Harriet said, but she was smiling. A little confused, I started to apologize and she interrupted. With a grin, she told me it was just the smell of a man working. And reminded me that it had been a long time since I was able to. She kinda liked it.

I kinda like it, too.

The Whoopee Moment

2009-05-27T12:07:00.000-07:00

I don't know whether it strikes every transplant recipient, and it doesn't always hit me. But a lot of mornings when I first wake up I have a Whoopee Moment. You know, as in the Bookshelf definition: Whoop-ee (slang interjection used to express jubilance; to engage in a noisy, boisterous celebration).

I open my eyes, blink once or twice, and realize I'm not sick anymore. I'm that guy who got a second chance, a whole new life. Of course, I don't want to scare Harriet or Bernie. So, I keep all the whoops and bell ringing in my mind. Still, Harriet sometimes asks me what that silly grin is on my face. I just smile a bit broader and give her a smooch.

If you haven't had a Moment lately, think about it. Whether you're a transplant person or not. Everyone has a chance to make a new start every day. You only have so much time to be happy. And it's a bunch more fun than a Whoopee cushion.

An after Memorial Day salute

2009-05-26T14:04:00.000-07:00

I don’t have a name for it yet, and it would be just among us transplant folks, but it’s sort of a reverse of Memorial Day. A salute to the thousands of men and women on the transplant teams across the country – not because they gave their lives, but because they saved others. Maybe we’d plant flowers instead of placing wreaths or bouquets at gravesites.

In my case, I’d be planting roses for a list longer than both of my arms. Very green! And, as I suspect the case is with most of us, there would be one special rose. I’d take care with a unique Orange Rose for Dr. Maher Baz, the head of the transplant team at Shands Hospital at the University of Florida. He's the physician who made the decision to move ahead with my bilateral lung transplant despite what could be a major complication. And the man to whom I owe this new life.

If anyone has an idea for what we should call this new celebration, I’d be delighted to hear it.

As an afterthought, which is what this blog is all about, I should note that I can not imagine giving the decision Dr. Baz made to a bureaucrat in some centralized health care system. If that were the case, chances are, I wouldn't be imagining anything. I wouldn't be.

I recommend...

2009-05-25T12:45:00.001-07:00

Yeah, I know. I’m always recommending something. But this time it comes with backing from almost every corner. And it doesn’t just apply to the transplant crowd. It’s a good idea for everyone.

Adopt a pet.

One of the most important things Bernie has taught me is a simple truth: There’s nothing in the world that can lift your spirits like tail-wagging, unconditional love.

The crying

2009-05-24T15:53:00.001-07:00

With me, the tears usually well up suddenly, unexpectedly. And in unexpected situations; while I’m driving and a familiar song starts on the radio, when I read a story in the newspaper, during an American Idol (really, no kidding) performance. Sometimes even a television commercial can leave me with streaked cheeks. The only underlying similarity for me is a display of strong positive emotion, usually love or a warm connection between friends.

My point in admitting that I sometimes get sloppy is, once again, to let you know you’re not alone. The fact is that most of us cry more often than the average person. Research indicates that transplant recipients have a high incidence of depression. And no wonder. To get where we are we had to be sick enough that only a transplant would save us, but well enough to survive the operation.

So, don’t get down in the dumps about occasionally getting depressed. You earned it, and you’re strong enough to get through it.

Who do I thank?

2009-05-23T13:09:00.000-07:00

It’s the question that keeps coming back; every time I think about how much my life has changed. I live with the CCC (Chief in Charge of Caregiving). I know the nurses and doctors, and have a chance to see them again every few months. But I may never know who deserves my thanks the most.

If you’re in my situation, you’re aware of the quandary. Transplant donors’ identities (name, sex, age, etc.) are not available. Of course, the hospitals and doctors know. But the only way the transplant recipient can find out is to write a letter to the donor’s family and send it to the transplant team. They, in turn, forward it to the family. Then, it’s up to them. They decide whether or not to contact you.

I wrote my letter in August of 2008. I’m still waiting, and hoping the doctors are right. They tell me it often takes a while to get an answer.

In the meantime, I have another one to tide me over: everyone.

Breaking the rules

2009-05-22T13:28:00.001-07:00

I talk a lot about following the rules; take your medications, exercise, use the Purell. However, on our walk this morning, Bernie gave me pause for thought (I haven’t used or even seen that phrase in ages, but it fits here). We were on our way back from the lake, approaching the grassy indentation next to the road that is supposed the act as a retention pond. It’s about ten feet deep, 20 yards across and less than half a football field long. Now, with all the rain we’ve had, it’s living up to its name: a quiet pool of greenish water surrounded by trees with a few water bugs skittering around.

As we came abreast of the pond, Bernie suddenly stopped; breaking the rules. When Heeling he’s supposed to be on my left side, half a pace behind me, and staying in step with me. Bernie knows that; he knows all the rules – Heel, Sit, Stay, Come, Down, Drop it (for shoes, toilet paper, car keys, and other items that find their way into the mouth), and All Right, which releases him. Sometimes, when we meet up with a squirrel, we also use Go get em! That’s his favorite.

Anyway, I said, “Heel, Bernie,” and started off. Bernie sat down. I waited a moment and then forcefully commanded, “Heel, Bernie,” and started off again. Bernie lay down. That’s when I realized he was riveted on something, a spot close to the shore of the pond under an overhanging tree. I moved to where I could see from his vantage point – and smiled.

Ducks! There was a Mallard and a mama floating there in the shade, not twenty feet from you know who. And, once again, a walk with Bernie has me thinking. Maybe sometimes, when you have a really good reason, it’s okay to break the rules.

You're not alone

2009-05-21T14:08:00.000-07:00

You are not alone. That’s the most important thing I want to communicate here. If you’re waiting for a lung transplant, if you’ve had a transplant, or if you’re a caregiver or family member, you are not alone. Look for them and you’ll find support groups, locally as well as on the Internet. There are too many to list here, but I do want to make you aware of three sources of information and inspiration that have helped me.

I highly recommend the Internet websites 2ndwind.org, and Transplant Living on Facebook.com. I also encourage you to get of copy of The Lung Transplant Handbook by Karen Couture (a transplant recipient herself). You’ll find it at Trafford Publishing, Amazon.com, Barnesandnoble.com other book internet sites.

A walk in the rain

2009-05-20T14:25:00.000-07:00

Bernie and I are just back from a walk. In the rain. It got me to thinking, as it usually does. Rain is like a lot of things in life. You can’t do anything about it. I have to keep telling myself that about my mother’s Alzheimer’s. She didn’t plan on getting it, anymore than she planned on it raining today. She doesn’t even know she has the disease – at least not anymore. The doctors, and Harriet and I, have done what’s written, but all the medical expertise and love in our hearts can’t cure it, anymore than we can stop the rain.

Still, out there today with my hair and Bernie’s ears dripping, I realized there is something we can and are doing. We can be her umbrella, shielding her from this rain. And in trying to do my best at that, I’m slowly learning another lesson: how difficult a caregiver’s job is -- and how fulfilling it can be.

The Shands visit

2009-05-19T13:43:00.001-07:00

We drove to Gainesville for my regular visit with the Shands transplant team yesterday. In one test, my FEV1 (the volume of air you can blow out in one second) registered as 4.46. The predicted number for a man my age and weight was 2.88. Yeah, that’s right. My FEV1 was 155% of predicted. The nurses and doctors were impressed. One of the nurses shook her head and said she didn’t see why I even needed a bronchoscopy. Naturally, the doctor smiled but didn’t agree. Happily, he was pleased after the bronch. No rejection, no infection, no problem.

So, everything went just fine. Until we were home. That’s when my hands started shaking uncontrollably and I got chills. They tell you that elevated temperature is one of the possible side effects of a bronch, but I’d had the procedure many times with no problems. I guess you know it’s easy to get scared, and I was when I took my temperature. It was 100.7. Anything over 100 is a “must call Shands” in my Transplant Book. It took several tries, but we finally reached a transplant coordinator. And she gave me some great advice: take two Tylenol and go to bed. Call us in the morning if you’re not better.

This morning I felt fine – and a trifle embarrassed. Ain’t it grand, this new life!

P.S. It rained all day and Bernie and I didn't get in a single walk. Guess I'll have to save today's thoughts for tomorrow.

Fun and games at Shands

2009-05-17T08:46:00.001-07:00

This afternoon we’re off to Shands Hospital in Gainesville for my regular check up with the transplant team. It has been three months since our last visit in February. Even though this time it includes a bronchoscopy (a long, complicated name for poking a camera down your throat into your lungs for a look see), I’m looking forward to the trip.

First, because we have reservations tonight at Camellia Rose Inn, the bed and breakfast where we stayed after my transplant. That should be a great reunion. We stayed at the Camellia for three weeks last May and became friends with the owners. Secondly, it will give me a chance to show the doctors what a good job they did.

Don’t expect a blog tomorrow. Bronchs can leave you a little loopy. However, I’ll give a blow by blow of the trip on Tuesday.

A special anniversary card

2009-05-16T07:52:00.001-07:00

I’ve mentioned that the one year anniversary of my transplant was this past Wednesday. Even though she was out of town Harriet managed to surprise me with a delightful Elmo card. But that wasn’t the only card I received. Someone else surprised me too: Noah, one of my three children from my first marriage.

Noah had a good reason to remember the date of my transplant. He and his lady, Victoria, were visiting us from Michigan when I got THE CALL. I vaguely recall apologizing for disrupting their vacation when they visited me once I got out of ICU. I think everyone laughed.

But it was something else he remembered, something he wrote in the Happy Birthday card he sent, that had me choking back tears. You see, Noah was born on the day before my father died of lung cancer. Happily, I was able to tell my father that he had a new grandchild and see him smile before he was gone. That experience inspired me to write the lyrics for a song which was later recorded by Lannie Kazan and included in a record album and television special celebrating the 25^th anniversary of UNICEF in Australia.

On the inside of the card he sent, Noah wrote that song’s title, substituting my name for his. “Halleluiah! Larry is born among us again.”

I love you, Noah.

Oops!

2009-05-15T10:18:00.001-07:00

We went on another walk this afternoon and the garage sale was still there. Bernie bought a supermarket shopping bag.

This morning's walk

2009-05-15T08:46:00.001-07:00

Bernie and I didn’t have much of a conversation on our walk this morning. We just got started when we ran into one of those Friday morning garage sales, with cars parked on both sides of the street and people everywhere, including a gaggle of kids. Bernie had a great time waggin and sniffin, but I never did really get his attention after that. Sniff, sniff, sniff.

Lessons, lessons everywhere

2009-05-14T06:43:00.001-07:00

My wife is in LA on business for the week. So, I’ve had to take on more of the burden of caring for my mother who lives with us. Mother has Alzheimer’s and is declining almost daily. It’s sad to watch her drift away, knowing there’s little you can do about it. It is also a lesson. Take advantage of this life while you can; try as hard as you can to enjoy something in every day.

By the way...

2009-05-13T08:16:00.001-07:00

It’s a special day for this transplant survivor. This is the one year anniversary of my double lung transplant at Shands Hospital at the University of Florida in Gainesville. My wife had to fly to LA on business yesterday, but she left me a surprise that I found this morning: An Elmo card for a one year old. I’m still smiling.

Love that, lady.

That awful caregiver!

2009-05-13T08:06:00.001-07:00

After all you’ve been through together, why are they acting like the Boss of the World? Making all the decisions before you can even open your mouth? Treating you like you can’t do anything; trying to tie your shoes for you, roll up your sleeves? Don’t they know they’re making you feel dumb? You know how to use the microwave. You can change a light bulb yourself.

Well…duh! You think you’re the only one who’s having to adjust to a new life? Give that brave, loving person who stood by you all this time a little slack. A little time to get used to the new you. I’m sure you’ll find that you can work things out together. That’s how you got here.

And another thing

2009-05-12T08:11:00.001-07:00

I think it’s not just the conversation on my walks with Bernie that helps relieve my depression. It’s the walking itself. It has been documented that exercise is as effective in reducing depression symptoms as antidepressants or psychotherapy. So if you feel a mood coming on, get out the tennis shoes. And walk away from depression.

Those clouds of gray

2009-05-11T14:24:00.001-07:00

You know what I mean. In both pre and post transplant sessions the doctors talk about it: depression. It’s not surprising many of us have it while we’re waiting on the list. The waiting…and waiting is a heavy weight to add to the slumped shoulders of someone sick with end-stage COPD, IPF, or one of the other pulmonary diseases.

But the sigh of relief that comes with THAT CALL doesn’t relieve all the pressure. The waiting is replaced with a whole series of niggling nits that might not be as nail-biting, but can be endlessly frustrating. The ability to cope with a new organ – where did it come from, why did I get it, how long will it last? The persistence to adhere to strict regimens of rehabilitation and medication therapies. The simmering worries about rejection which eventually kills most of us, the side effects of the immune suppressant drugs which can lead to renal failure, cancer or other problems. And the sometimes mind-numbing struggle with the fact that you are no longer you. That, as a friend of mine recently said, you’ve lost the person you used to be. This one is neither better nor worse -- just different. As a solution she suggested that I suck it up and take Bernie for a walk.

I my case, it was excellent advice. I do my best thinking on those long walks with Bernie. And I’m working on who that different person is.

Whether you’re a transplant survivor of not, I urge you to do something about it if you’re struggling with depression. Make an appointment with a doctor. Find a friend you can talk to about it. Or a Bernie. And remember the lyrics to that old song: Gray skies are going to clear up. Put on a happy face.

The physical therapist

2009-05-10T11:43:00.001-07:00

Actually, he said sometimes it's best to take two days off. On Mother's Day weekend, for example. :)