Day 3 Treatment

Bernie’s sacked out next to me as it’s fairly late but we wanted to give you a quick update.  Day 3 treatment was uneventful, except that Larry was low in sodium, so he had to do 4 hours of the rabbit drug and then 4 hours of a sodium chloride drip.  I asked why he just couldn’t have some fries with lots of salt!  But he’s coming through the treatments with no side effects and is on the downhill slope to being back at home.  As it stands today, I’m to go get him at 10:30 Sunday morning.  Thanks goodness….Bernie says I’m not as good a conversationalist as Dad. 

 

 

Day 2 at Shands

Hi, it’s Bern…..gettin’ the hang of this typing thang…sorta. Today was a better day for me.  Mom FINALLY put a hot dog in my food so I could eat it.  And I got 2 LONG walks with her too!  Played in the neighbor’s yard across from the lake while Mom talked with the new lady owner of Captain, a white shitzue who doesn’t even know there are lizards in his yard.   He just sat there while I chased them, frequently mushing down the bushes as Mom yelled at me to stop.  But I caught 2 of them.  Spent a lot of time on my back scratching it on the grass….sure felt good.  Mom says Dad’s 2^nd day of treatments went without any side effects and that now he’s just bored.  I understand bored….all I did was sleep while Mom worked on that funny thing with a screen that looks like a TV but only has words on it.  The doctor told Dad they will test the levels of the rabbit drug in his system early Friday morning and if the levels are ok he’ll get the 3^rd treatment on Friday, 4^th on Saturday and then he will come HOME on Sunday.  If the levels are not right, then they’ll have to skip a day of treatment and he’ll have to stay until Monday.  I can’t wait for him to come home so I can do 4 walks a day; I have to help keep Dad in shape so I look really sad and he thinks I’m the one that wants to go out.  Just call me Dr. Bernie.

 

 

Day 1 - Uneventful

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

 

 

 

 

Bernie's 1st Entry

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

Awfully Tight Gut

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

Regards,

Larry

Here's the Plan...

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

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

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

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

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

Immune to what?

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

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

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

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

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