Day 1 - Uneventful

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

 

 

 

 

Bernie's 1st Entry

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

Awfully Tight Gut

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

Regards,

Larry

Here's the Plan...

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

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

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

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

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

Immune to what?

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

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

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

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

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

Into each life...

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

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

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

Seperation anxiety

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

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

Grrrr!