September BP

 

Sleep Study

It’s 7:30 PM and I am sitting in the lobby of St Luke’s Rehab, waiting to spend the night here for a Sleep Study. I’ve been here for 15 minutes and I’m here in the lobby with about 9 other people. They told me to get here at 7:15 and here we all sit. That’s pretty damn efficient. But that will end up being my only complaint of the evening.

This is my second sleep study. I did one about four years ago and it ended up with me sleeping with a mask on my face, attached to a BiPap machine to prevent me from stopping breathing at night.

The first sleep study was done at a place out in the valley called Aspen Sleep Center and it seemed much more efficient than this. I remember I walked in the door and they led me to a room. They got me wired up and then left me alone to watch TV for a while before I decided to go to sleep.

Then I got woken up several times during the night to put different masks on me and see what worked best.

Oh, here comes a team of nurses. Maybe it’s time to go in.

Nope! False alarm. They took pretty much everyone else but I’m still sitting here typing away.

I guess I shall just continue to sit here and wait.

8:15PM: Okay, right after I wrote that last sentence, a guy came and got me. 

I’m in a nice big room with a large bed, maybe a double. It has a TV but I can’t get the Mariners game. 

9:13PM: Josh has been spending the last 45 minutes getting me wired up. Here’s what I look.

Pretty! Huh!

I guess I’m about ready for bed. I really don’t know how well I’m going to sleep with all the wires on me. It will be an interesting night. I’ll complete this post in the morning.

6:27AM: I made it through the night. I don’t feel like I slept very well but then again, I don’t feel any different from when I normally wake up after a night of sleep. I'm surprised they didn't wake me up at all during the night. There was no clock in the room so when Josh walked in and said it was time to get up, I was happy it was over. I had survived!

I’m getting out of here and going to breakfast.

8:18AM: After enjoying a nice morning meal at the local Waffle House, I am home and fresh out of the shower.

All the electrodes they put on my head were held in place by some waxy goo that Josh painted on. I was able to comb some of it out while getting dressed at the facility this morning.

But a shower was required to really get it all out. Now I’m pretty again and happy to be home.

The best news I learned from Josh this morning is that my oxygen levels were good all night. That means I don’t have to sleep with an oxygen tank going. The other thing he told me was I have fewer problems with my breathing when I don't sleep on my back.

All that news makes me happy.

How to Breathe Update

I think I'm really starting to lose it. If we have to pick a space in time for losing it, let's say it's right here.

I was positive that I wrote a post the other day that updated stuff with me and my health...or lack there of. But it is not here and I don't know where else I would have written it.

I guess it doesn't matter. I'm here now and I'm damn sure aware that this is me writing this. Save!

Last Friday I went in the Sacred Heart for a scheduled Right Heart Cath. It's a procedure where they insert a catheter in my neck, and stroll around down to the heart where they can read pressure and get some information.

Apparently, they were not happy with the information and sent me to a hospital room. 

They decided to up the amount of milrinone I'm getting and do a follow up pulmonary function test. Since it was a holiday weekend (Labor Day) and nobody was going to be around to run the tests, they decided to let me go home and figure everything out in an outpatient setting. 

So I spent Friday night in Room 632 and got out Saturday afternoon.

Since then, it feels like a switch has been thrown to screw up my breathing. I'm am using my O2 generator a lot more when I walk and I regularly dip below 90% in my oxygen levels.

Whether my deteriorating heart is causing lung issues or my lungs are just turning to crap on their own has yet to be determined.

But that's where we are for now.

In Bug Bite news, I'm happy to say that my wrist has healed up nicely since I last wrote about it and I am now longer wrapping it. Here is a picture to affirm my statement of healing.

I've been hitting it with moisturizing cream because it is kind hard and crusty. I believe it is helping but I'm keeping an eye on it.

August BP

 

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.