Stanford Transplant Decision

Just got off the phone with Nurse Tamara from Stanford. They have turned me down for a transplant.

I have also received a letter from Tamara that says, "Our team does not think you would be a good lung transplant candidate due to your prior surgical history, pleural plaques, age and kidney disease."

She also talked about the difficulty they believe it would be just to remove my lungs. She said something about calcification or some other sticky matter that makes my lungs attached to my ribs, something like that.

So now the question is, how long have I got? But then, none of us really know that, do we!?

 

September BP

 

Stanford Trip Two

A few hours ago, we arrived home after a quick trip to Stanford University. The purpose was for a couple of tests, to meet some other doctors, and hopefully get on the list for a transplant.

We will have to wait a bit longer for an answer to getting on the list.

At that point, we will have to decide whether we move to California to wait out the call for a new heart/lung or are we able to stay here until we get that call.

We left last Sunday and had a long drive to Redding, CA. From there it was about a four-hour drive on  Monday morning to Stanford for our first appointment at 1:00PM, which was a CT scan of my chest, lungs and abdomen.

We then drove back to San Fran to stay with Arnie. We had a great dinner that night with Arnie and his daughter, Rebecca at a Tai food place whose name was unpronounceable.

We had more appointments the next day and again on Wednesday, at which point we were finished. I decided to hit the road for the trip home and try to get to Bend, Oregon on the first leg of the trip.

The only mishap was getting rear ended on Monday morning just south of Redding.

We were looking for a place to gas up and picked an exit that turned out to have no gas stations. At the stop sign at the end of the exit ramp, Susan stopped and checked the traffic coming from her left. The sun was just up and very low in the sky, making it hard to see the traffic. She moved up a bit more and stopped. That's when Andrea bumped into us. 

It was a very low speed bump that caused a little impression in our bumper and slightly mis-shaped the bottom of the rear lift gate.

She was very sorry and upset and we exchanged information.

I finally called her insurance company on Friday and made the report. It was quite an ordeal involving lots of questions from an agent, more of the same questions on-line, and then more of the same questions on Susan's behalf, since she was the driver.

The only thing missing was a bunch of 8x10 color glossy photographs with circles and arrows and a full explanation of what each one was on the back to be used as evidence against us. Or in this case for us.

And that's not true either. We took plenty of photographs.

Now we wait to see what happens next.

Arm Pit Lump

For some time, I've had this little lump in the middle of my left arm pit. It's been no big deal and no concern...until today.

 I woke up this morning and realized the thing was twice as big. It doesn't look like a bug bite and it doesn't appear to want to pop. Not sure what's going on but I wanted to report it here.

Travels with Rhea

We will be traveling to Stanford University on Sunday to see if I qualify for a heart/lung transplant. I do not care to be traveling with any discomfort. In this case, discomfort means diarrhea.

As such, I have discontinued the use of a drug called Ofev. It is for my lungs but its main side effect is diarrhea. Explosive diarrhea!

My last pill was yesterday at 7:00 AM.

As of 4:00 PM on Monday, 33 hours after taking the last pill, diarrhea is still happening. The purpose of this post is to track how long it takes to return to normal.

Stand by!

11:07 PM: Okay, since 4PM, there has not been an event. It's possible my innards have gotten the Ofev out of my system and I'm back to normal poops. 

Gub’mint

1:09 PM: I have just sat down in the lobby of the Social Security office here in Spokane. I am here because…well, it all started a while back. Fortunately, I’m here in the Social Security office and I expect to be here for at least an hour and a half. So, I have the time to tell the whooooole story.

Back in July, Susan and I drove down to Palo Alto, CA to find out if I qualify for a heart/lung transplant. At that time, after a battery of tests, they sent us home for more tests.

We’re heading back down in about a week and hopefully we will get the word that we can get on the list. Or not. But at least we’ll have an answer.

Among the things they want from me are a bunch of vaccinations. The last one I have to get is a Covid booster.

Last week, I went to my neighborhood Walgreen’s to get my Covid vax. Walgreen’s said they couldn’t get the approval from Medicare to give a shot.

I went home and got on line with a Medicare chatbot. Once I finally connected to a human on the chat, I explained the problem and they responded with “everything looks fine with my account.

On Saturday, I returned to Walgreen’s and again ran into the same problem. This time, I had them print out the screen that said I was being rejected because my name was invalid.

Today, I finally had some time to get on the phone with Medicare and wait on hold until I could talk to someone.

I waited about 17 minutes and connected with Adara. I explained my problem. She looked through some stuff and said it appears Social Security has changed my name. Nothing major, they just removed the “Jr.” Anyway, that appears to be enough to screw up everything about my Medicare and Social Security.

So here I sit. The number they gave me is A40. I just heard A16 called.

There is a sign right in front of me that says appointments are required. The number to call is 866-331-5532. I’m thinking I will go back out to the truck and call the number.

It’s taken me almost half an hour to write all this out and frankly, I don’t feel like waiting. I’m outta here!

5:01PM: I got home and got on the phone to Social Security to make an appointment. After about a 15 minute wait, I got connected to a very helpful lady who told me the name on my account is as it should be. Stanley J. Burke, Jr.

We made an appointment anyway, which is coming up immediately on October 3rd at 9:30.

Prior to the call, I tried to get on my SSA account on line. It is suddenly not accepting my password. So I tried to re-set my password. I got an e-mail saying I had successfully changed my password. I then tried to access the account and it told me “no”. “Wrong Password!”

I did this three times. During my call, I asked the agent if she could walk me through re-setting my password. She told me they don’t do that any more. She said they have passed that type of thing off to the Post Office. Doesn’t that sound like great government efficiency?