General Update

I had a nice walk this morning in the midst of a gentle rain. I walked out and the rain was falling and I decided to be a MAN and continue the walk. I did the mile in 23 minutes, which is about what it usually is. I have a goal of breaking the 20 minute mark.

I got myself an Oxymeter, which reads my oxygen level. I use it on my walks. I have also been using the portable oxygen generator. 

The first part of my walk seems to go well and I feel like I'm walking at a pretty good pace. On the second half of the walk, the oxymeter vibrates... A LOT! When my oxygen level drops below 90%, that's when the vibrating starts.

I am continuing to have issues with the spider bite on my left wrist. I think I'm on the road to recovery. I went to seek medical care for it last Saturday. They gave me some antibiotics to take for five days and a cream to lather over the wound.

I can already tell it's improving.

The Doctor there gave me a really good tip. I have been using this gauze wrap that you buy at the drug store. He told me to go to Big R and go to the animal supply area. They have the same stuff but it's much cheaper.

Still Waiting…and Likely To Be For A While

I got a call late yesterday from Lisa, the coordinator of the Heart Transplant program. She said that after looking at the results of the breathing test I did yesterday, they are not happy with the condition of my lungs. They need to work on some therapy or new meds before they can present me to the board for a thumbs up or a thumbs down.

Apparently, right now, I’m a thumbs down.

The other news I got was the Liver Doctor I’m supposed to see, can see me sooner that October First. Now, she can see me on September 30th. That’s right, a whole day closer.

I took my first walk with the Oxygen Generator this morning. Susan and I walked a mile around the park and I was quite spent when we got home. I can’t tell that it made a difference but I’m sure it didn’t hurt me. Except that it’s kind of heavy.

In other health issues, I’ve been dealing with this bug bite on my left wrist for about a month now. The first picture I took of it was back on July 26th. 

Since then it got pretty angry but it was improving.

Here’s a picture taken last week.

I left it uncovered for a couple of days after that point and that might have been a mistake.

Here’s what it looks like today.

I’ve be wrapping it up for several days now but it does not seem to improve…or get worse. It is not showing any signs of infection. It is not warm and there are not red streaks traveling down my arm. It just oozes a clear fluid that really soaks up sterile pads quickly. 

The nurse is coming tomorrow to change the dressing on my PICC line so I’ll have her take a look.

Update: Oxygen Man

Susan and I have been cruising along this Summer, dealing with the heat, the house projects, my PICC line and changing the Milrinone bag every two days. Plus we are dealing with a cat who requires an IV bag boost every three days, andthere have been lots of Doctor appointments where they check  the PICC line and my general health. They are still evaluating me has a heart transplant qualified kind of guy. I'm not on the list yet but we are hoping for a decision, one way of the other, by the end of the month.

Last Thursday I met with Dr. Fatima Ajaz, who is a Pulmanary Specialist. She was not happy with my oxygen levels and wants me on an oxygen generator when I walk.

I have another appointment with her office on Tuesday and I am going to have one of those torturous breathing tests, and figure out more about the oxygen generator.

A guy showed up on Friday and dropped off this huge oxygen generator for around the house, a portable oxygen generator for when I go walking, and a large emergency backup tank of oxygen for when the world explodes and I need to breathe.

At this point, I am skeptical about how badly I need this apparatus. I generally feel okay or at least, not any worse than I've felt for the past few months.

On Friday, before I had the appointment with Dr. Ajaz, I took a test ride on my neighbors e-bike. Lou got this bike a few months ago. He hasn't ridden it a lot and had an issue with the battery shortly after getting it. 

Anyway, I have been researching e-bikes and he let me take his for a spin. I ended up going on a four mile trip down to the river and back. It was very enjoyable and I really like his bike...right up until the time that the battery died.

This bike has those really fat tires and it's pretty heavy, so the ride home took a while and involved many stops to catch my breath. 

That's why I am wondering how bad I need this oxygen boost. I pretty much wore myself out prior to the appointment. I hadn't really thought about the connection until now. 

I guess we'll wait and see how the breathing torture test goes.

 

 

Waiting for the Waiting List

We are through the process of meeting everyone on the transplant staff that we have to meet and finished all the tests and appointments they require of us.

That means we should be hearing from them within the next couple of weeks if we made the list. (I’m using the Royal “We” in this instance because Susan is as much a part of this as I am.)

One of the things “we” had to do was go in to “our” Dentist for an exam. In the course of that appointment, he found “we” had a couple of cracked fillings. “We” have an appointment this afternoon to ameliorate that problem, but just “I” and my fillings shall be going.

Other than that, we are just going about our days, working a little on the kitchen and cleaning the house in preparation for a visit from Susan’s sister, Margaret. She gets here Friday and then the pressure is off me for a good week to do much of anything. 

We have a concert in the park planned and a baseball game to go to. I’m not sure what else Susan has planned but for the most part, it doesn’t include me. Which is fine!

June BP

 

Life with a PICC

I am now a good week into living with an IV bag tethered to my waist. It's a new life style that is going to be with me for a while. 

To recap. I have had a PICC (Peripherally Inserted Central Catheter) line implanted in my right arm. The PICC line is attached to a pump which delivers a continual dosage of a drug called Milrinone. My doctor calls it Rocket Fuel for the Heart.

One bag lasts about 50 hours. We have gotten in the habit of changing it every two days at noon. Today is a bag change day. In about an hour. As I check the pump, it says I have 4 hours and 43 minutes before my bag is drained.

I have gotten used to wearing it around my waist like a fanny pack. I generally keep it in front of me. If it's off to the side, it gets in the way when I sit. It also wants to pull my pants down.

It's a little odd in the shower as I have to wear this long plastic glove over my hand and arm. The PICC line must be kept clean and dry at all times to avoid infection. They are crazy obsessive about infection. And so, I must be as well.

Sleeping has not been a big change. I have plenty of line from the pump to allow me to toss and turn. In fact, I think I've been sleeping better since I got the PICC.

As far a s the comfort of the PICC line, it's okay. Sometimes it gets itchy and sometimes there is a slight burning at the site of the line. But for the most part, it something I'm aware of. There is a slight pressure on my arm and if I were to concentrate on it, I could see it being annoying. 

But this is my life now and I'm going to make the best of it and go with the flow.

    

Going Home

It is now Wednesday, Day Five of my semi-involuntary incarceration. I am getting out and let me tell you, life is going to be different from here on out.

I’m not there yet, but I’m close to being considered to get on the heart transplant list. There are still people to meet and more tests to take but it seems we will be hearing a decision in about a month.

In the meantime, I am going home with a pump and an IV bag strapped to my waist. I do not know how long I will be tethered to this but I think it will be awhile.

Susan and I have been going through training on how to change the bag every two days and how to keep everything clean to prevent infection.

We are waiting now for the infusion team to show up and watch us change from the pump in the hospital to my new portable pump I will carry. After that, I believe I am being discharged.

I say that because they have let me get dressed and they have brought me most of my discharge papers.

So here I am in my final moments in Room 630, Bed 1.