Thursday, March 30, 2017

O2 Concentrator vs Tanks

Dear Diary,

I got some interesting news from my oxygen supplier today. Turns out they don't even carry backpack size electrical concentrators any longer. Apparently, they were a nightmare as far as maintenance and upkeep.
My next option is smaller tanks which I could carry in a case over my shoulder.
There are a number of sizes available and this option would allow me to drive without worrying about battery life.
Turns out I can just add this equipment to my regular order without any prescription change or an increase of monthly cost.
Very small concentrators are available from a few other companies but that would require more hassles with the insurance which, quite frankly, neither the wife nor I are up to right now.

Tired with a lot of muscle aches and poor O2 efficiency today. Don't know what the hell is going on. diastolic BP still in the high 40s despite being off valsartan for two days.
Will communicate this to the cardio guy in the morning.

I AM TIRED OF BEING SICK!


Cheers!


"Every day above ground is a good day".  -- Scarface

Monday, March 27, 2017

Visit With Cardiothoracic Surgeon

Dear Diary,

We met with Dr. B, the new chest cracker this morning. Really nice guy and very informative.
We were lacking some data that he expected we would have but here's the general gist of the encounter.

He wants me to have another TEE (TransEsophageal Echocardiogram) to assess the current size and status of the myxoma. He feels that, unless the tumor is mobile enough to partially occlude the mitral valve, it couldn't be causing my respiratory symptoms.
He explained (quite graphically) that he is against going in and removing the tumor unless he knows that is what is causing the problem.
He feels that if he removes the tumor and doing so fails to resolve the problem, there is a very good chance I would be on a respirator, fed through a stomach tube for weeks or even months. There is also the very real possibility that I could have a stroke or even die, possibly on the OR table.
So, as long as I have this lung issue, I am an extremely high risk surgical candidate.
Until I have another TEE, not much is gonna happen...as usual.

Also, it appears that I may be over-medicated for my hypertension. My BP at the doctor's office was around 160/70, that was before I had taken any meds for the day. When we got home I took all my meds as usual and 3 or 4 hours later the BP is around 95/40 and I can barely drag myself around the house!
One of the new meds I'm on, valsartan, may be the culprit. I'm going to speak to my cardio guy tomorrow morning to see about modifying the dosage.

So, to say the least, both the wife and I are are a little depressed.

Ending on a good note, it looks like I may be approved for a portable O2 concentrator. That would allow me to drive again which would be nice, especially since I haven't been behind the wheel in over a year.


Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, March 22, 2017

The Latest News

Dear Diary,

So, here are the latest updates.

This past Monday, I saw my GP for a diabetes follow-up. Much to my (and his) surprise, my usually off the scale lipid panels were perfect, the best I've ever had. I'm hoping it's due, at least in part to my low carb diet. Time will tell.
He also had ordered a CBC which seems to have been lost in transit. I have more unrelated labwork to be done this Monday so I will speak to them about that then.
Also, we seem to have my chronic hypertension under control after all these years! (knock on wood)

Tuesday was a disaster. We had an appointment with the pulmonologist at St.Joe's at 3:00 pm and didn't get out of there till around 5:30 pm. We wound up getting caught in Phoenix rush hour and didn't get home till after six, plus, I was having bowel issues which made the trip somewhat miserable.
On the bright side, Dr. O commented that my most recent PFT has improved and chest films were normal. He actually said that my lungs weren't really in that bad shape. He is still convinced that most of the problem is due to the myxoma.

*sips water*

So now, as a result of that appointment, we finally have an appointment this Monday with Dr. B, the cardiothoracic surgeon. The plan is after I see him for an evaluation, Dr. B, Dr. O, my wife and myself will sit down together for a face to face meeting. If that goes well, I will be scheduled for surgery shortly thereafter. A lot more info. after Monday.
I really hope this plan comes together real soon because, as I've stated before, I am literally sitting on a ticking time bomb.

That's it for now.


Cheers!


"Every day above ground is a good day".  -- Scarface

Sunday, March 05, 2017

Back To Bourbon And Bitching

Dear Diary,

Well, howdy there! Feeling a little chatty here after imbibing on bourbon and a couple of 'benzos',
Don't recommend it for the kiddies unless you really want to shut 'em up bur it works for me. Lol!

Managed to blast my diet into oblivion at the local Dunkin' Donuts® with the wife and some close friends. Yep! I still have a couple of friends. They're just waiting till I die hoping there's something in my will for them! There are going to be sadly disappointed.

The wife is at work and I miss her badly! I get very lonely without her. I spend a lot of time wondering what I'm gonna do if she croaks before me.

*takes long sip of booze*

I'll tell ya one thing though, the very next person who has the balls to suggest that I find Jesus, they're gonna meet him right then and there! This is "people hating day" for me. Outside my extended family, there are only 4 or 5 people that I actually consider 'friends'.
I'm really happier on my laptop than I am with most people, besides, my laptop doesn't drink and has absolutely no problem with consensual sex.

*more booze, no sex...yet*

I've never seriously considered suicide. Suicide is for losers and cowards, neither of which seems to fit my persona. I actually regard my declining health and eventual death as more of an adventure than a threat.

All my life, I've never 'fitted in' the way most people seem to do. In my youth, I was always skipping school in favor of escaping into the woods on the nearby hills of the New York Southern Tier where I spent most of my ten years. I also spent a good deal of time on the nearby river as I had a wooden rowboat which I had purchased from a friend.

I was tormented and frequently beaten in school for being different. I didn't want to fight or engage with my peers. Most of my friends were adults. By the time I was 16 and moved to Rochester, NY, my spirit was pretty much broken. It is only over the past couple of decades that that has started to improve.

Over the course of my 64 years on this God forsaken planet, I have gone through four wives and managed to survive on menial employment.

I AM TIRED OF THE BULLSHIT!

*more booze*

How do you think you would feel if you walked around all fucking day in wet diapers because of lack of bowel and bladder control?
How would you feel if you peeing and pooping blood all the time?
How would you feel if the only way to control your weight was  to give up most of what you enjoy eating?
What if you had active cancer gradually eating away at your body and you have no clue where it is or what can be done about it?
What if you depended on up to three liters of oxygen, 24/7 to get you through the day, wheeling a tank around with you wherever you go due to pulmonary hypertension?
What if you had a benign tumor in your heart which could embolize or metastasize at any time potentially causing stroke, death or both.
What if your medical team didn't want to do open heart surgery until my lung function was improved?
What if you had Type ll diabetes?
What if you had no sexual function whatsoever and never would again?
What if you had to take 14+ drugs every day at the correct times?
How would you feel if it was fairly certain that you would probably not live more than another five years, if you were lucky and you had fucking funeral homes sending you propaganda,

I'm out of here for tonight,

R.I.P. Chris Hitchens, You died well and not in vain!

*more booze, fuck it, I say*


Cheers!


"Every day above ground is a good day".  -- Scarface

Wednesday, March 01, 2017

Today's Activities

Dear Diary,

Today was a fun day. We had to get up at 5:00am to get to St. Joe's for a 6:30am check-in for my PFT (Pulmonary Function Test) and my six minute walk. Just had time for a cup of black coffee.

According to the respiratory tech, I did pretty well although I won't really know too much until I see Dr. O on the 21st.

The real fun was yet to come. We stopped by the hospital cafeteria for coffee and a light, 'carb smart' breakfast and then took off for home. Upon arriving, I discovered that the nagging bladder bleed that's been bothering since yesterday had decided to go nearly straight blood and a significant amount of it. No clots this time, just a nearly constant drip. I elected to skip the Xarelto® at least for today because I think it is really aggravating the issue. The bleeding is worse than is was when I was on warfarin.

7:00pm: I decided to self-cath and do a saline flush. No clots but a lot of dilute blood. We're just going to have to sit tight and wait. I really don't want to go back in to the ED for another round of  CBI!

8:00pm So far, it appears the bladder wash out was successful. The urine is running clear. :)

On another note, a few days ago, I re-started my ketogenic diet (Atkins®). It seems to be the only way I can reliably lose significant weight. So far, I've lost about nine pounds of water weight and my glucose is stabilizing. I used the diet previously but didn't stick to it. To really work, it needs to become a lifestyle.

Going to go eat dinner now.


Cheers!


"Every day above ground is a good day".  -- Scarface