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Saturday, April 30, 2016

Thank You All For Your Help And Concern!

Dear Diary,

When I promised more interesting content a few weeks ago, this is not what I had in mind, believe me!
This is several orders of magnitude more than anything I thought would happen to me in my lifetime.
Because of that, I felt it important to let folks know how incredibly much Karen and I appreciate anything that you have done. we know how tight money and time are to almost everyone and we wanted you to know how grateful we are and how important everything that you give it to us. It doesn't matter whether it's a large amount or whether it's a small amount or even if it's just best wishes, it all helps!

There are good days and bad days involved with the condition like this, but I think what bothers me the most currently is just simply not knowing what the root problem is. They still have absolutely no idea after all these months and all the tests

The big bills are starting to roll in now,as expected. This will be all the stuff that the insurance doesn't cover.
What's really frustrating for both of us, is that we're going to be responsible for a great deal of the non covered bills and we have nothing to show for it we are literally shelling out all the money we have on health expenses and I'm no better than I was when we started.

I see Dr. H, the heart surgeon on Monday. Hopefully then, we'll have some more details about what's going to happen in the immediate future.
The healthcare system in Arizona is such an incredible zoo that it's hard to believe that anybody gets treated and survives. You really have to learn to be your own advocate in so many different ways.
It really gets bizarre when the patient has to learn to read their own charts and medical histories just so they can correct the mistakes doctors have made or points in history that they've overlooked.
As I've observed before, it's all about the almighty dollar. Big problem is that apparently never going to change. 
My heart literally breaks for the thousands of people right in our own City of Phoenix they don't have any insurance and they don't have the knowledge to even come close to navigating the healthcare zoo.

Well, it's about two days since I stopped dictating the above. It's Sunday evening and I have a nice bladder bleed started.
The wife and I are actively watching it hoping we will not have to go into the emergency department again.
This condition is so aggravating! It seems to flare up whenever we have important things to do within a short period of time.
The important thing here is how heavy the bleed really is. Is it light enough that we can wait a day, two days or more or is it heavy enough that if we don't go in tonight I could bleed out. That's the kind of crap we deal with all the time.

More updates forthcoming. Have a nice day


Thursday, April 28, 2016

CT Scan Done. Now We Wait.

Dear Diary,

Went and got my weekly INR done this morning and then over to the imaging facility for the cat scan.

Normally, I don't mind them but this one was a pain in the ass. A lot of breath holding and lying on both my back and my stomach which isn't the most comfortable position for me.

Then, when we were finished, the tech slides the table out of the scanner and my O2 cannula got caught on it and crashed to the floor. No apparent damage to the regulator which is nice as I don't own it.

Then he burns me a CD which I'm supposed to give to the pulmonary people. Hurry up and wait.

I was feeling unusually short of breath this morning. It may have something to do with upper body muscular tension caused by anxiety. I hope that's what it is.

Still having a problem with the bleeding hemorrhoids which are impeding progress with improving the anemia. 
I really don't know what we're going to do about that. It's sort of like one step forward and two steps back. Any durable, long term control probably involves another surgery anyway.

I guess I'll go out and sit on the porch with the wife. It's happy hour!


Wednesday, April 27, 2016

Heart Surgery $$$$ !

Dear Diary,

We managed to get out and get our handicapped tag for the truck this afternoon. Been meaning to do that for a long time now. Oxygen delivery came in too, so we're set for a while.

Tomorrow is busy with 2 appointments. One in the morning to get my INR checked and then a chest cat scan in the afternoon.

Now that the heart surgery is actually going to happen, we have elected to set up a donation page in hopes of getting some financial help with the massive debt load we are heading into.
Both of us are truly embarrassed to have to ask for help but we are on Social Security, Karen is in her early seventies and no longer a candidate for the workforce and I cannot do any physical work as I have in the past due to the respiratory issue.

We have provided a link to the donation page for anyone who feels that they might be able to donate.
ANY contribution helps!

If the donation page link dosen't work for any reason, here is the page address:

Thank you for your help!


Tuesday, April 26, 2016

This Health Stuff Is Getting REALLY old!

Dear Diary,

Okay. Here's the update on the previous post regarding the "mass in my heart".

I had the transesophageal echo (TEE) this morning which required both my wife and myself getting up at around 4:30am. I thought I had planned everything carefully the night before including a full oxygen cylinder for the trip to the hospital and back.
Much to my dismay, I discovered that, in my infinite wisdom, I had somehow managed to leave the main valve of the tank...on! As if that wasn't enough, it was my last tank, reserved for this appt.
I scrambled through the other 7 tanks and managed to find one with about a 20 minute reserve at a 3 liter flow. We managed to make it to the hospital by throttling the flow of and on. When we arrived, they very kindly provided a portable tank rather than have me turn blue and writhe on the lobby floor. ;)

*Note to self: You require much more O2 when you panic. Lol!*

The procedure itself was pretty much a non event. They just numb your throat and give light anesthesia then ram an ultrasound transducer down your throat. I never thought I could swallow something that large. I guess I'm in the wrong profession!
The funny part was that despite the usual combination of Versed and Fentanyl, did not put me to sleep. As a matter of fact, it barely made me sleepy at all! The whole thing took about 5 minutes and I was fully awake the entire time, much to the distress of the cath lab staff.

Now for the good stuff. There is a small mass in my heart, 1.9 x 2.2cm. I'm not going to go into great detail about the mass itself because the end result is the same regardless of what it is.
I will be undergoing open heart surgery, probably within the next 2 weeks.
The benefits of having the surgery far outweigh the risks. The overall mortality is <5%. The chance of something happening to the mass and causing it to break and enter the bloodstream are much higher.

All that being said, things are really gonna get busy around here soon. I will update the blog with shorter, but more frequent entrys.
Wish me luck. I admit to being a bit scared but the alternative is worse.


Thursday, April 14, 2016

For My Next Trick...

Dear Diary,

Okay, here goes!
The news tonight concerns the anomaly they found on my heart the other day. It appears that Dr. M feels that it may be a small tumor, specifically a myxoma.
I'm going to have an esophageal ultrasound preferably within the next week. Dr. M will do it himself and the information he gets should clarify exactly what this is.

If it is any kind of a tumor,  it is very likely to be benign. Either way, it will have to be removed because there is a significant chance it's breaking and spreading cells throughout the body which could result in a stroke if it should travel to the brain which would probably be lethal.
Unfortunately,  there's no reliable way to tell if and when it might do that.

Now for the kicker. The process of removing it is quite simple and generally very successful however it requires open heart surgery.
If required, the procedure will be done at the former Paradise Valley Hospital in Scottsdale.
I hope that I don't have to go through this as I've been through quite enough already but it looks like there is a significant possibility so that I will have to.

Needless to say, all this nonsense is putting incredible stress on my wife Karen. She's been a trooper these past 3 months putting up with everything else and this is something she definitely doesn't need. Please be kind to her if you encounter her online and don't add to her troubles.

Dr. M, my cardiologist, is very confident that the procedure will go well. I asked him about doing this in the face of all my other comorbidities and he is at this time not concerned about that. Either that or he's a damn good liar. Lol! 😂 
If all goes as it should, I expect to be laid up for 4 to 6 weeks. That seems to be the statistical average.
My insurance company is really going to love me now as these procedures can run anywhere from $30,000 to $200,000. Wait till they get a load of that! 

I suppose I should be a lot more concerned and nervous about the potential upcoming procedure but actually, for some reason I'm still more concerned about Donald Trump actually winning the election! 

Other than that, things are fairly stable on all the other fronts. My INR today was 5 something so that was too high so I have to lay off the warfarin for a couple of days and then resume at 5 milligrams.
I guess that's about all for now and I'm sure they'll be more frequent posts as this thing unfolds. 


Sunday, April 10, 2016

More Exciting Changes (And No, They're Not Good)

Dear Diary,

I guess I might as well pick up where I left off last time. A lot of new changes, most of them undesirable have occurred since the time I posted last.
I'll tell you straight out, I'm feeling pretty depressed about this whole thing. It's like one thing after another after another. Problem is I can't seem to get rid of any of them.

We still haven't managed to get the chest CT scan. I went in for it and they were unable to find an appropriate vein for the contrast media. Because of that, I'm going to have to get it done at the local hospital as an outpatient procedure. We're going to see if we can arrange for that sometime this coming week.

I did manage to get the cardiac ultrasound that was recommended by Dr. M taken care of. It seems they discovered some type of tissue anomaly in or on my heart that they didn't see before,  possibly some kind of a tumor. Life just gets better and better! 
Right now they're talking about the possibility of going down through a vein or an artery in my neck and visualizing whatever is there and  possibly  removing it. Don't know whether it'll come to that but it doesn't sound very thrilling to me! 

Respiratory issue of course, is still there. There may be some news regarding that though.
I just had some blood work done ordered by Dr E which included a CBC. 
Interestingly, that showed me to be seriously anemic with a value of 8.8 when the lowest I could be without being sick should be minimally 13 to17.
What I didn't realize, is that anemia, especially that profound can result in a number of significant symptoms one of which is breathlessness due to the lack of oxygen transfer because of the lack of blood cells.
I am now on intensive iron therapy along with folic acid. Hopefully after two or three weeks, we might see at least a little Improvement.
What we don't understand though, is how the anemia got missed in all the multitude of tests including multiple CBCs that I had during my hospital stays.
They are also still tossing around the idea of a bronchoscopy with a lung biopsy. I have no idea if that's going to become a reality or not. Hopefully not! 

Now for the real kicker. I had my PSA checked routinely at the 6-month mark and we find that it has jumped from 0.3 to 0.8 in the three to four months that I've been in the hospital.
This is definitely not good ❗ 
Our first step is probably going to be to determine whether the disease is still localized in the prostatic fossa or whether it has metastasized. Regardless,  it has doubled in approximately three months which is never good.
I won't have much more information regarding that until I sit down with Dr F. 
I'm suspecting that we'll probably initially use hormones to slow this down if I can tolerate them. I'm really not looking forward to that but I have very few options here.

It has become very obvious, very quickly, that I'm going to be spending the rest of my life, however long that may be battling chronic disease. This is not how I wanted to play out.
It appears to be simply a situation right now of which of the these things is going to kill me first! I'm really not trying to sound morbid but that's the way it seems to be.

I guess what's depressing the wife and I the most right now is just the lack of any kind of information as to what's really going on. That's very tough to deal with day by day. It just kind of sucks the energy out of you. 

Well, I guess I'm just going to sit back and try to enjoy the rest of the day. Looks like we might have some rain coming up.
I'll keep posting as things unfold.
By the way, if you remember back a number of post ago., I said this diary would probably eventually get exciting again. Lol! 


Sunday, April 03, 2016

Just Checking In

Dear Diary,

Well, here we go again. The reason I haven't posted in so long is that anything I have to say tonight really isn't much different than my last post.
We're still dealing with respiratory issues. Medical team still has no idea what it is or how I got it. Obviously, my main concern is how do we treat it,  can it be fixed or is it going to ultimately kill me. 

The other health issues have basically taken a backseat to this one. I don't see how it could be, but if it is idiopathic pulmonary fibrosis,  the average survival times three to five years.
As I mentioned in a previous post, neither Karen nor I had any clue that this was coming on. As far as I'm concerned,  I was asymptomatic before I went into the hospital.

This is really sort of a vicious paradox. On one hand, my body is deteriorating fairly rapidly for lack of exercise  but I can't exercise because I don't have the breath to do it. 
It seems that I now have three life-threatening conditions, all vying for top spot.
At least for a while, I've chosen not to publish stats and values and readings and all that good nonsense because I think it would be meaningless to anybody that follows this blog unless you were here and I could explain exactly what it meant. I just don't have the energy to go through all that data and actually write it down.

Among other things, I'm due for an echocardiogram as well as a high-resolution CT scan within the next few days.
With any luck at all, we may be able to get a little information or I should say a little insight into what's going on with the lungs.
I know change is occurring, but so far nobody seems to know the significance of it.
In addition to the aforementioned test, I'm also having my PSA done this week so I'll be able to comment on the results of that, probably by the end of the week.

That's about it I guess. I'll try to be a little more timely with updates in the future.
A lot of the situation as I said before is that I simply have no clue what's going on here.
Do me a favor and keep me in your thoughts.