The big Why -- at least one of them

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...

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...

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...

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

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

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...

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

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?

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

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

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

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

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

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

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!

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

 

This morning's walk

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

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...

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!

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

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

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

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

The physical therapist said always remember to take a day off

This is it.

 

It's none of your business -- continued

I gave a small shake of my head and told her that, actually, I’d like to try to help her. Then I went into the pitch I’d worked out over several other tries at getting people to stop smoking. How I shouldn’t even be here today, how smoking gave me COPD which has no cure, and how I was one of the lucky ones. I had a double lung transplant.

During my short speech the color had drained from the smoker’s face. Thinking we were somewhere on the same page, I smiled softly and told her I’d seen her smoking outside before she came into the restaurant. I got a completely unexpected response. She suddenly pushed back from the table, hissed that it was none of my business -- and then started crying.

In the next ten minutes, sitting at that table, I learned a number of things. First, the four of them had a pact to stop smoking. Two of them were still sneaking an occasion cigarette. They were a quartet of close, very supportive friends. And I should be extremely careful about sticking my nose into other people’s business – but not give up my campaign. All of them thanked me for giving them new incentive to stop smoking.

Of course, I apologized before I left. I don’t know what they thought of the glass of Chablis I asked the waiter to pour them.

It's none of your business!

I go out for lunch alone quite often. Why I’ll get to in another blog. What I want to discuss now is one particular lunch. I was at my usual table with a good view patrons inside and also out on the patio. I could see the entrance and, through the glass doors, the sidewalk on the outside.

 

That was where I first saw her; an attractive, middle-aged woman with dark shoulder length hair. She stopped before entering the restaurant and checked her watch. Then she took a pack of cigarettes out of her purse and lit one. She stood there smoking and checking her watch until she finished the cigarette, dropping it on the ground and crushing it under her shoe.

 

When she came into the restaurant, she glanced around a moment, then smiled and waved. I watched her as she joined a table for four with three other women already seated.

 

I should mention here that when I came home from my transplant I promised myself that at least once a month I’d try to get someone to consider quitting smoking. This woman seemed like a natural for this month’s attempt.  She hadn’t been checking her watch while waiting for someone. She’d been checking her watch to see how much time she had to smoke. From experience, I knew that when you’re that addicted, you can use some help.

 

Since I’d finished my lunch, I asked my server for the bill and paid it. Then I got up and walked over to their table. I excused my self and asked if I could talk with them for a moment. They were all taken aback, but the smoker who turned out to be the most outgoing of the group, ask what they could do for me. I borrowed a chair from the empty table next to them and sat down.

 

(TO BE CONTINUED IN TOMORROW’S BLOG)

 

Remember the bad old days

I’ve only started on this new life, but I think I’ve traveled far enough to offer a small piece of advice. At least something that’s working for me.

When you get frustrated with the side effects of your meds, angry with your transplant team for their seemingly emotionless responses, afraid of what might happen next, or feeling alone and depressed, think back.

Back to before that telephone call.

Back when you struggled for each breath, dreading the next hospitalization, and wondering if you’d get out this time. When you spent your days and nights at the end of a length of plastic tubing connected to an oxygen generator. When, try as they might, the people around you couldn't hide the sadness in their smiles.

Remember the bad old days. And you'll realize how good you've got it now.

Pills...pills...everywhere!

 When you get a transplant of any kind, you know you’re going to be on immunosuppressant medications for the rest of your life. And, depending on your transplant team and your own individual situation, that may be only the beginning.

 

In my case, besides three anti-rejection drugs, it also includes an antibiotic, something for acid reflux, my prostate, my Cholesterol level, my heart and my blood pressure, an anti-viral, plus Iron, Calcium and magnesium. And naturally, some have to be taken more than once a day.

 

 I counted them a few minutes ago: 10 pills in the morning, 2 at 2p.m. and 8 in the evening. And you know what I think? It’s a very, very small price to pay for a chance at a new life.

 

I hope you have a caregiver like mine. She keeps track of the supply, and puts them all in the right box in one those giant pill organizers every Monday. All I do is take them.

 

 

 

To shake or not to shake

The doctors all say we shouldn’t shake hands with people, but I make exceptions. I don’t tell them, of course. The doctors, I mean. However, at social functions like a wedding reception, a birthday party, or anywhere I’m being introduced to people I don’t know, I smile and shake.

 

Putting you hands up like you’re being arrested or jamming them in your pockets and trying to explain is embarrassing for both of you. Invariably, it also leads to that conversation I’m tired of having, and labels me as “the transplant guy” for the rest of evening.

 

I much rather be thought of as the guy with the bottle of Purell in his pocket. Just be careful not to touch your face with your hands. And when you can do it without being obvious, wipe your hands with Purell.

 

By the way, I do the same thing with old friends. But I don’t try to hide it with them.

 

 

Time off

I’m always talking about sticking to the routine; take your meds, keep your hands clean, exercise, etc, etc. But you should remember to take time off. Contemplate your navel, do some reading, find a friend on Facebook, whatever. Just be you instead of that transplant person.

 

That’s good for your health, too.

 

Camellia Rose

I’m sure everyone has different feelings about the place they stay during their early recovery. I have a warm attachment to the place we stayed; a bed & breakfast in a gorgeous Victorian house on a tree lined street not far from Shands Hospital in Gainesville.

Here’s what I wrote while we were still there:

Camellia Rose

Deep in the flora

Of a tropical paradise

Down where palms stand tall

Spanish moss clings to oaks

And gators growl

I found my beautiful

Camellia Rose

Our affair began

The moment I set eyes

On her graceful, classic form

And I knew I would never

Seek shelter in other arms

Once she opened herself to me

If ever I must leave

Be it only for a single day

This lovely flower

Will forever remain in my heart

As if I began a new life here