The Rejection Blues

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

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

8:00 a.m.

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

8:10 a.m.

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

8:15 a.m.

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

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

8:30 a.m.

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

9:00 a.m.

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

Read the Orlando Sentinel and Wall Street Journal.

10:a.m.

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

10:20 a.m.

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

10:40 a.m.

Drop off my shirts at the cleaners.

11:00 a.m.

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

11:45 a.m.

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

12:15 p.m.

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

1:15 p.m.

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

2:00 p.m.

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

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

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

Rain

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

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

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

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

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

Up and Down

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

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

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

Going up...

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

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

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

Going down...

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

Happy Fourth of July!

An ending and a good start

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

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

Sort of like falling in love.

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

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

Oh, and her cell phone didn’t ring.

Unoffical report on bronchoscopy results from 6/26/09

“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.