The Journey Home

We are heading for home today.

We are going to return on highway 101, that more or less follows the shoreline all the way up the coast. We would like to make it to Crescent City, way up at the top of California.

One problem we are having is we don’t have a room for tonight. They want at least $200.00 a night and there doesn’t seem to be a lot available.

We are going to try and find something on the road. Susan is not very excited by this prospect and I know I’ll be getting some “I told you so” glares if we can’t find anything. But, come on! This is America. There’s got to be a room out there.

The on line maps tell me we are driving 355 miles today and it will take about six hours. We hope to be on the road in a couple of hours and I’ll update here when we reach the end of our travel day.

8:14PM: It turned out to be a 10 hour day. Left San Fran at 9:30 and got out of the car at 7:30. We made it to Grants Pass, Oregon. Four hundred and forty mile, ten hour day…but more like nine since we stopped at In n’ Out in Eureka and stopped again to look at Redwoods.

Here are a couple of photos.

Stanford Day Three

Today was our third day at Stanford. Yesterday was a mess. They had a couple of appointments too close together so we were scrambling between appointments.

Then I left glasses and pens behind, couldn’t find my watch when I took it off during a blood draw, and just generally created undue grief on the situation.

Today we only had one appointment with the lung transplant peoples. We had a brief consult with one of the Doctor’s P.A.’s about my health history. I walked to hell and gone for a chest X-ray.

We finally met with Dr. Shravani Pasupneti. She told us that she thinks I need a new heart. She’s not so sure I need lungs. 

The other problem she threw into the mix was there is something weird going on with my pancreas. Here’s what it says in the report.

This report is listed under CT CHEST, ABDOMEN PELVIS WITH IV CONTRAST.

Pancreas: Diffuse fatty atrophy. More prominent than prior examinations, there is a region of relatively increased density and enhancement at the midline pancreatic body (Series 11, Image 70) that persists on the delayed sequences (Series 13, Image 66) with mild surrounding fat stranding. No ductal dilatation.

What it means is we are going to run a bunch of tests back up in Spokane and then return to Stanford in a couple of months.

We were hoping we would hear about getting on the transplant list by next week but that is not going to happen.

Right now, we are about to enjoy a nice barbecued pork chop dinner her at Arnie’s.

The Start of the Week

It’s going to be an interesting week.

We have arrived in San Francisco at the home of my lifelong friend, Arnie. We are here for a week of testing and meetings to see if I qualify for a heart/lung transplant.

We spent last night in the hills above Sacramento with my sister and her husband Craig. It was very hot when we arrived, a stark contrast to the winter we seem to driven in to here in the city by the Bay.

Arnie lives in an area of town that likes to cling to the fog. I stupidly forgot to pack any kind of a jacket. I’m going to be freezing my ass off.

We left Spokane on Friday and drove all day to Klamath Falls. We spent the night there in a Super 8 Motel that was less than stellar. Had to get an extra set of towels and thank the Lord we didn’t run out of toilet paper. The roll was low and there was no backup.

Saturday was a pretty straight shot to Pilot Hill where Stacey and Craig live. We went out to this great little open air bar for beer and flat bread. The place was jumping and the band was rocking.

What should have been a two and half hour drive to Arnie’s took four hours. An hour of that was spent covering about a two or three mile stretch that just crept along forever.

This California traffic is crazy and I am not a fan.

Tomorrow, our first appointment at Stanford is a 8:00 AM. Arnie says it’s about 45 minutes away. We want to be sure and be on time so we’re leaving at 6:30.

Stanford University Day One

We have made it to Stanford.

We left Arnie’s at 6:30 this morning and had no trouble getting here. It was about a 45 minute trip and we made it easily on the nice four lane freeway with very few cars on it. What a difference from our trip getting here yesterday.

We got here in plenty of time and are currently sitting in the waiting area of C21 at 300 Pasteur Drive on the campus of Stanford University.

8:52AM: That’s complete. I just got off a scanner that measured my spine and looked at my right and left hips. At 9:30, we are due at A11 for the next appointment…looks like something Pulmonary.

In the meantime, we found a cafeteria and we had a little snack.

12:07PM: We have made it through the morning appointments. I had to do the dreaded Pulmonary tests. It involves sitting in a little booth, breathing through a mouth piece and following the technicians instructions.

This is the test where you breathe normally until the tech tells you to take a big breath. Then you have to blast it out and keep blowing, keep blowing, keep blowing until you nearly pass out. Then you do it again. And again.And again until finally she has mercy on you and let’s you out of the booth.

I also had a walking test and I did pretty good at that. I guess the point of these tests is to determine just how sick I am.

We have an hour and a half break between appointments, so we went to a little Stanford Gift Shop and I bought a Stanford Medicine Hoody for $40.00. I needed something like that because I forgot to pack any kind of a jacket. It’s cold at Arnie’s house and the Oregon coast will probably be chilly as well.

Only one more appointment to go for today. We are back in the cafeteria waiting until 12:45 for the last appointment. It’s something called a Sniff test. I’m good at sniffing.

2:54PM: We are back home at Arnie’s. The Sniff test was literally a Sniff test. I stood on a little platform in from of a scanner at lung level. The Doctor had me breathe some regular breaths. Then she had me sniff a couple of times. That was it.

We are done for the day.

Day One complete.

Weight Milestone

Let’s start with the constipation issue. Everything came out well in the end.

The reason I’m posting today is to announce I’ve reached one of my weight loss goals. Today, I weighed 224.6 pounds. I finally broke the 225 mark.

Unfortunately, I’m going to lunch with the boys and then going to dinner with Susan’s cousin who surprisingly showed up in Post Falls.

Neither of those meals is going to contribute to weight loss.

One of the things I notice during my constipation issue was my loss of appetite. I went on line to re-check the side effects of Ofev, the new drug I’m on that is giving me diarrhea.

It did say that one of the other side effects was loss of appetite. I had not noticed that since I started this drug back on the 7th. But it has definitely been the case for me since Saturday.

I’ll be keeping an eye on that.

Constipation

 I’m not sure if I’m having constipation or not. What I do know is I have not taken a crap since Saturday afternoon.

I don’t feel any giant urge to go and I don’t feel bound up. There is an ever so slight discomfort in my stomach, like an upset stomach, but not really.

I called my Pulmonologist because I’ve been on a new drug she prescribed called Ofev. The drugs is supposed to reduce the progression of scarring in my lungs. One of the side effects mentioned is diarrhea. 

I’ve been taking the drug since June 7th. The diarrhea started within a couple of days and has been a semi regular companion since.

I just got off the phone with Nurse Amy from Dr. Ajaz office. She suggested I increase fluids, drink Prune juice, perhaps some fibrous fruit like peaches.

So I’m off to the store.

Return to Posting

I was on a real streak of posting for a while and then it all went away. So I thought I better get back on the interweb horse and start posting again.

Back on April 27th was the last time my weight was below 230 pounds. I finally broke the barrier today, weighing in at 228.8.

I am very dedicated to losing weight right now in anticipation of my visit to Stanford Medical. And my dedication has been paying off. I have lost 8 pounds in the last week. The main changes I’ve made are cut down on beer and stay away from grains and sugar.

I’ve also been doing some exercise in the form of riding Mark’s eBike. I have been borrowing it now for well over a month. When Mark loaned it to me it had about 60 miles on it. As of yesterday, it has almost 300 miles on it.

I’m having a great time riding it around but it is easy to create the illusion that I’m getting some exercise. I try to peddle at all times. Depending on the level of assistance, I can create some resistance while peddling while not getting wiped out when I go up a hill.

I hardly ever use the throttle except when it’s the end of a ride and I’m trying to wear down the battery. Then it’s like I’m flying around the neighborhood on my twenty mile per hour motor scooter.

I have finally concluded that my best course of action is to set the bike on Assistance Level 2. That’s out of five levels. On 2, I can feel the bike being assisted, but there is some pretty good resistance as I peddle. It travels at around 8 mph. 

On Level 3, the bike takes off and runs at about 12 to 15 mph while I am peddling. There is very little resistance but as long as I peddle, the bike cruises.

The weather continues to be awesome. Nice sunny days but not too hot. I try to ride the bike whenever I can. Some friends loaned me their saddle bags so I can go to the store for stuff, as long as it’s not too much stuff.

I guess, this post is my way of letting Mark know that he’s not getting the bike back.