Showing posts with label Cardiac. Show all posts
Showing posts with label Cardiac. Show all posts

Friday, July 28, 2017

A Little More Good News

Dear Diary,

Just had another Doppler echocardiogram on the old ticker to re- evaluate the left atrial myxoma.
It's been a year since the last one when it was first discovered.
Good news! It has barely changed at all! This news buys us more time for me to get in shape for cardiac surgery.

Weight is still decreasing (despite my cheat days) and lab values are good.
No apparent side effects from the ADT either.

Not 24/7 O2 dependent either. Maybe sildenafil is working on my lungs but it sure isn't giving me a woodie! LOL!


Cheers!


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

Wednesday, July 19, 2017

Officially In The 'Lupron Club'

Dear Diary,

Just got my first dose of Lupron yesterday, in the form of an injection in the butt. The area is a little tender but that should resolve shortly.
As mentioned previously, the goal here is to literally "starve" the cancer of testosterone in hopes that is will retard, or even stop the progression for a certain amount of time (the longer the better)!
The average effective range is 18 to 24 months, sometimes less and sometimes much more.
We will have to be content to wait and see.
There are a host of common yet unpleasant side effects associated with hormone therapy and I will be updating if and when they happen.
One of the more common ones is 'gynecomastia' or enlargement of the male breasts. I guess it's fortunate that I've always enjoyed wearing women's apparel! LOL!

I got another Doppler Echogram done on the old ticker today. We need that to keep track of the progress (or lack thereof) of the myxoma. I will know the results of that in about a week. I really hope it hasn't progressed much because I'm still not ready for surgery.

Things are looking much better with the lungs. I was prescribed sildenafil at my last visit to my pulmonologist but haven't been able to get it filled yet due to an unexpected pre-auth.
Apparently, the stuff is really expensive!
Sildenafil is a potent vasodilator and we hope it will be able to relax and open up my pulmonary arteries resulting in at least a modest reduction in pulmonary arterial pressures.

I think I'm gonna go lie down for a little while 'cause I'm getting fatigued

More dirt later!


Cheers!


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

Thursday, July 13, 2017

Some Good News For A Change!

Dear Diary,

So, it's been an eventful past couple of days!

On Wednesday, we saw Dr. M, my cardiologist for a routine follow-up. He is pleased with my progress with my weight and the respiratory issue. We are going to schedule another Doppler echocardiogram for this coming week to check on the size of the myxoma. My last one was about a year ago. The new information will help organize our priorities regarding the heart surgery.

Today, (Thursday) I went to St Joe's for a six-minute walk test and pulmonary function testing.
Apparently, I did very well and there is an improvement from the previous testing 4 months ago.
It was also officially confirmed that I have lost 30 pounds! They were impressed.

After the testing, we met with Dr. O, the pulmonologist to go over the game plan.
He is finally going to start treating the pulmonary hypertension with drugs. We have been waiting a long time for that.

We are going to start with low dose sildenafil aka Viagra as a first line treatment and see if we get a good response. If we do, they will do another right heart cath to check the pressures.
The goal here is to actually reverse this process that is causing the PH. I hope he's right because PH is usually a chronic progressive condition and not reversible.
Cardiac and pulmonary auscultation was unremarkable save for a few fine crackles in the left base.

*sips on a neat bourbon*

As far as the cancer goes, I'm about 2 1/2 weeks into bicalutamide (Casodex®) to see if we can reign in the horses that have escaped the barn. I expect to be starting leuprolide (Lupron®) in about a week.
This is not a cure but it could theoretically delay the onset of metastases and hopefully buy me a few more years.

Any chance of a cure is no longer on the table but long term control is very possible. I am always grateful that I am a Gleason 7 and not a 8, 9 or 10. My heart goes out to those who are.
At this stage, pain control is not an issue but I am very concerned with this current nonsense about opioid regulation. If I live long enough, eventually I will require them. If they become over-regulated, I may face the death my father had and I don't even want to go there!
For folks in my position, opioid drugs are our friends.

*sips a little more bourbon*

We are now into monsoon season here in Paradise with triple digits and high humidity. Hoping we'll get a little rain this year. Every year we seem to get less and less.
Outside conditions are less than optimal for any kind of exercise so, once again, I'm kind of confined to the house.

Well, enough for tonight. Keep the faith!


Cheers!


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

Thursday, April 27, 2017

Pulmonary News

Dear Diary,

It appears that the 'gods of cardiopulmonary medicine' actually discussed my case in some detail this morning. What a change!
I got a phone call early this morning from Dr. O's nurse practitioner requesting a callback to discuss my diuretic regimen.
They want to start me on another diuretic, spironolactone, in addition to my daily furosemide (Lasix®).

They are going to try to dry my lungs out even further in hopes of relieving some of the arterial pressures. If they can do that, it will automatically make me a much better candidate for future heart surgery. Within the next few months, I will have another spirometry and another 6-minute walk.
Depending on those results, I may even have another right heart cath. to check pulmonary pressures.
Those run $25,000 per test out of which we pay $1,240. We average at least $800/mo direct outlay to 10 medical providers alone to say nothing of misc. expenses such as prescription costs, insurance premiums, home medical care and supplies etc.

We are no longer able to maintain a buffer for emergencies such as vehicle breakdown and maintenance, home repairs and maintenance and property upkeep. The list goes on and on.
Due to the last bankruptcy, we have no credit whatsoever so that is not an option. If my wife wasn't working at the grocery store part time, we would definitely crash and burn.

I have no idea what we'll do if we have to start actively treating the cancer. My only hope is to be able to hang in until next year when I hopefully will qualify for Medicare.

Wish me luck! ;)


Cheers!


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

Sunday, April 23, 2017

Routine Health Update

Dear Diary,

I saw the cardiologist on the 14th. He was very impressed with my modest weight loss. We have agreed that I should stop valsartan totally as it obviously wasn't agreeing with me. My BP has improved significantly since then.
No comments other than asking if Dr. O, the pulmonologist was going to treat my PH medically and if not, why. I am going to schedule an appointment with him tomorrow.

Dr.B, the cardiac surgeon finally had a chance to review my TEE. He is convinced that the tumor is not causing my respiratory symptoms. As far as removing the tumor, we have all agreed to take a 'watchful waiting' approach until my overall health improves enough to allow surgery.
He feels that my risk of a thromboembolic event due to the myxoma is probably < 2% / year.
I am good with that.

As far as my ongoing weight loss, I haven't lost any weight in about two weeks. I am adhering to the diet plan 100%. The fact that that I can now utilize o2 better is allowing me to be a little more active so maybe that will speed things up.
The improvement in respiratory function is significant enough so that when I forgot to switch my o2 daytime cannula over from the CPAP unit a couple of days ago, I walked around doing household chores for most of the morning with no supplemental o2.
I started feeling a little fatigued by late morning and that's when I discovered the issue. I have no idea what I desatted to during that time as I didn't check the oximeter.

In other news, I finally got the swamp cooler cleaned and operational last week. The Arizona desert is in full bloom right now and the temps will soon be in the low triple digits. The combination is really messing with my seasonal allergies, so using the cooler will save us a ton of money and filter a lot of crap out of the air.

More later when I get ambitious! ;)


Cheers!


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

Friday, April 14, 2017

Cardiologist Visit

Dear Diary,

Today's cardio visit was extremely unremarkable. We are still in 'hurry up and wait' mode.
Nobody is communicating with anyone else. Doc wants to know why the pulmonologist hasn't suggested treating the PH medically.
The heart surgeon is supposed to call me this Monday regarding his assessment of my TEE. He apparently tried to call me last week but I missed the call.

There is an outside chance that with all the medical bills I've racked up lately, I may have met at least part of my annual health insurance deductible. We're not sure but when I saw Dr. M this morning, the $50 copay was waived. I'll take that!

*sips bourbon*

I'm thinking of starting 'Dave's Online Death Pool' so my friends and enemas can place wagers on which is gonna kill me first, the cancer or the myxoma.

Fuck it! Enough for tonight.


Cheers!


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

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

Saturday, February 18, 2017

A Nice Rainy Saturday

Dear Diary,

Quite rainy here in paradise this weekend. It's a nice change from the usual.

The wife is at work and I'm putzing around the house doing as much as I feel I can get away with.
My back and neck are giving me problems, as usual, and the rain isn't helping much either plus my weight in up to 298 as of this morning.
The furosemide I'm taking for water weight doesn't seem to be as effective as it used to be. Not sure why.

I've got an appointment with Dr. F, my urologist this Tuesday to possibly have a quick cystoscopy done to see what the current bladder status is and also to bring him up to speed on the prostate cancer/PSA issue. We hopefully will be putting together a plan of action for when it is needed.

I also have pulmonary testing including a 6-minute walk test and spirometry scheduled for early March. This is in preparation for seeing Dr. O, the pulmonologist on the 21st.
The 6-minute walk test is not a 'pass or fail' type thing. It is merely a practical measure of what I can currently do. I will be allowed to do it on oxygen, fortunately!
This is all being done to hopefully qualify me for heart surgery in the very near future.

The wife is just getting over a head cold which is something neither one of us needs. Hopefully, I won't get it! The seasonal flu is also going around, big time. Both of us have made sure we are properly vaccinated but the thought of getting even a light case is scary. At our age, the flu can be fatal and this year's vaccine is supposedly only 50% effective.

I think I mentioned in a previous post that I was now on Xarelto® as a blood thinner. My cardiologist managed to get it approved by my insurance but it turns out that my co-pay will be over $200 for a thirty day supply! We cannot possibly afford that so I may wind up back on good old warfarin.
I am currently researching discount plans and manufacturers programs to see if there is anything I can use. Unfortunately, most of the really good programs require that I be uninsured, which, of course, is not an option.
The good news is that Xarelto® appears to be the only one of all the drugs I have to take that it going to be unrealistically expensive...so far.

At my last cardiology appointment, both the wife and I were amazed at the results of the angiogram and other tests that I have undergone. Dr. M says that, other than the myxoma in the left atrium, I have the heart of an 18-year-old! Given my previous lifestyle, that's remarkable. I feel sorry for the 18-year old with my 64-year-old heart! ;)

Money's a little tight right and we were forced to replace the battery in the S-10 just last week. My little granddaughter, Arabella over in Italy had to go without a birthday gift from Papa and Karen again this year. We both really miss them. I'm beginning to think that I may not be around to walk her down the aisle when she decides to get married. She is such a beautiful little girl!
I don't blame the kids at all for thinking we're ignoring them but our lives are in limbo for the foreseeable future and there's not a lot we can do about it.
If I can ever regain even a major fraction of my health, it might be possible to fly over there for maybe a month. We would love to be able to do that. My granddaughter only knows me and her grandmother from Skype,

My kids!



Well, the old lady should be getting home any time now and I hope she is careful in the rain as our windshield wipers are somewhat compromised. Gotta get new ones soon!

I think it's gonna be a really good night for sleeping and dreaming of a better life for both of us.

Good night all!


Cheers!


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

Monday, January 30, 2017

Update On Cardiac Cath Procedure

Dear Diary,

Here's the update on the coronary angiogram I had done this morning. The procedure itself was less traumatic than having a tooth filled. It took about 45 minutes during which, I was contentedly enjoying the rapport of the cath lab team from a soft, mildly sedated level of consciousness courtesy of Versed and Fentanyl.
They did both a left and right heart study and got direct readings of my pulmonary pressures. They used only my right arm instead of the groin to access the radial artery and vein. Other than two IVs, there are only two tiny punctures. We  were out of the hospital by 2:30pm and home by 3:30pm.
We were there about seven hours...a long day since we had to get at 5:00am.

Good news and bad news. First the bad news. I do have significant pulmonary hypertension, the cause of which we still aren't sure about. The Myxoma may be contributing to it oor not. For now, We will probably try to control it medically.

The good news is that I don't appear to have any significant plaque deposits or any occluded coronary vessels. Yipee! :) This was somewhat of a surprise to me considering the lifestyle I've led!

The next step is to meet with Dr. B, the heart surgeon. At that meeting, we will discuss our options and when the surgery will be scheduled.
I am a bit apprehensive yet at the same time, relieved that we are finally going to get this mess taken care of.

Now it's time for supper!


Cheers!


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

Tuesday, January 24, 2017

Latest News

Dear Diary,

Okaaay, so the latest in this continuing health saga is that I will be undergoing a full right heart cath at St Joe's on Mon, Jan 30th in preparation for meeting with the surgeon who, hopefully will remove the myxoma and correct any other issues that may be present.

The surgery is finally becoming a reality!

To say that I'm not at least a little apprehensive would be a boldface lie, but at least I have some of the best team players in Phoenix.

For the catheterization, I should not be in the hospital more than the better part of one day and will just have to rest for a couple of days after (I'm good at that) ;).

As far as the actual surgery goes, barring any serious complications, the hospital stay shouldn't be more than three or four days at most.

More information to come after the catheterization.


Cheers!


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

Friday, January 06, 2017

Big News (we hope)

Dear Diary,

So, today is Friday the 5th. Yesterday, we went for my appointment with my new
pulmonologist at St Joe's.

After meeting with his nurse practitioner for about half an hour to coordinate my medical history we got to meet Dr. O. Dr.O is the Associate Medical Director of the Lung Transplant Program at Norton Thoracic Institute, St. Joseph’s Hospital and Medical Center.
After reviewing all my history and tests over the past year, he feels extremely confident that my symptoms are not due to a lung disease at all. It is my heart.

Apparently, the left atrial myxoma is causing a back pressure phenomenon which is causing pulmonary edema and pulmonary hypertension resulting in exertional hypoxia. He believes as soon as we get the myxoma removed my symptoms should resolve.

He is going to present my case to one of their top thoracic surgeons and to my cardiologist, Dr.M, to develop a plan for surgery. He feels there has been too little communication between the active players over the past year.

I will see him again in a month to go over the plan and any risks involved.
We are also going to meet the surgeon who will do the procedure. It is possible that this can be done endoscopically without having to split the sternum. Less likely, but still possible is their ability to accomplish this without stopping my heart.
Complications are expected however the main concern is if, and how long I will remain intubated post-surgery.

Around that time, I will have another LFT (lung function test), this one at St. Joe's, which will help them decide whether I am a viable candidate for surgery.

Before yesterday, both my cardiologist and I were starting to think that I would have to live out the rest of my life with the myxoma.
Let's hope these people know what they're doing!

Additional good news. With my new health insurance, I can now re-establish my relationship with my last urologist, Dr. F. This could not happen at a more opportune time.
He can now re-address the bladder issue as needed but also take over most of my cancer care.

Life is good! :)    
                       
Cheers!


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

Tuesday, January 03, 2017

Relevant Ramblings

Dear Diary,

It's been a rough week here in Paradise for yours truly. The weather has been cold and rainy for the most part and my aches and pains are killing me! :( It's mostly my lumbar area and my middle and upper back.
I feel like all my muscles are stiff and heavy (no surprise there!) It's the worst just before I get up in the morning so it's costing me some sleep time.
I'm trying to avoid taking any OTC meds for it because I'm on so many other drugs.
I guess I'll just turn up the heat a bit and wait till the weather changes.

*sips wine and feels sorry for himself*

The bladder bleed is making the rounds again for some obscure reason. That's another thing that's making me depressed. I just feel like a walking disaster area!
I just go day to day, room to room followed by a 50 foot O2 line. I can no longer do any of the things I enjoyed before I became ill and that hurts... a lot.
I'm starting to lose faith that the "miracles of modern medicine" are going to get me through this.
Even if my lungs do get better, I still have that goddamned ticking timebomb that is the myxoma sitting there in my heart. How the hell did I ever get that?

*more wine*

I can't believe Karen is hanging in with me through all this. She came from an entirely different lifestyle and yet she has been my rock for 25 years now. Imagine living 24/7 with a totally disabled,dysfunctional individual.
Sometimes, I think I have driven her crazy. My wife is a saint and I will love her forever.

*pours second glass of wine, (yes, it's cheap)*

Lately, I'm finding myself more and more preoccupied with my own mortality, especially at night when I ought to be asleep. I meditate on what to expect when my final moments arrive.
I want to die well, as the saying goes yet I'm not quite sure how to do that.
It's really not the state of non-existence that concerns me but the way I get there does. Am I doomed to suffocate to death? What is that like? I want a peaceful death, in the hospital where they can control the process somewhat.
I keep thinking that I might rather have the cancer take me rather than the lung disease. For some weird reason, dying by cancer seems preferable to slow suffocation.

I want my mommy! ;)

Do I seem creepy? I hope not but if I do, I can redily understand why. I don't fit into society like other people do. I never have. I've never really wanted to.
Ever since I started school I have been considered weird to people that don't know me well. They seem to see me as someone to avoid. Over the years, I have learned to accept this but it still bothers me when I see in someone's eyes that I scare them. Ok, enough of that!

I really miss my son and daughter-in-law. I am often afraid that I won't ever see them in person again.
I don't think they really believe that I love them both. I fear that I won't see my little grand-daughter again. Time passes so quickly!

Oh well, the wine is taking it's toll and it's time to go.



Cheers!


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

Wednesday, December 28, 2016

General Update



Dear Diary,

Blood pressure has been real high, (180s) systolic for a couple of weeks now. Talked to the cardiologist about it and we decided to stop the Metoprolol in favor of Carvedilol which is a non-selective beta blocker. We also added Valsartan. Valsartin is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker), that is selective for the type I (AT1) angiotensin receptor.
Hopefully, these new drugs will get this under control before I have a stroke.

*sips wine*

In other news, I have decided to drop the pulmonary guys that I've been working with for the past year.
I am switching to another pulmonologist at Norton Thoracic Institute which is a part of St. Joseph's Medical Center which is where I had my lung biopsy done.
I have an appointment for the middle of next week for another echo and a vent perfusion scan before I see him the next day.
The last time I had a V/Q lung scan was a year ago when this nonsense first began. At the time, the results were unremarkable. It should be interesting to see what we get this time.
When I get the latest echo, I will ask them to check the status of the myxoma at the same time.

*sips more wine*

All these new goodies mean that the wife and I are going to take a huge financial hit on top of what we already owe. We have coasted for the past couple of months due to my deductibles all being met for 2016 and the insurance picking up 100%.
With my new insurance, I have a much higher annual out of pocket ($7,000) than I did last year so it looks like we're in for a bit of a struggle.

At least I didn't spend this Christmas in the hospital like I did last year. Thank goodness for small favors! Lol!





Cheers!

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

Friday, December 16, 2016

Interesting News (at least to me)

Dear Diary,

It appears that I actually don't have interstitial lung disease after all. Met with the pulmonologist on Thursday and while we were talking, he mentioned that the lung biopsy had ruled that out. Apparently, he thinks the symptoms may be due to pulmonary hypertension along with the tiny blood clots in some of the arterioles of the lungs coupled with possible right heart failure due to the myxoma.
Anyway, it is not an ILD and that's good news.

The plan is to treat the pulmonary hypertension medically which we want to begin ASAP. Problem is, Norton Thoracic appears not to have any record of the right heart cath that was done during the biopsy! That is absurd! The pulmonologist cannot proceed with therapy until he has the data from that test.
What this means is I will need to undergo another right heart cath if the hospital can't find the required information very soon.
There is no doubt whatsoever that the procedure was done as I was awake and alert when they removed the catheter from my neck in post-op.
If the procedure has to be repeated, I'm actually considering asking them to do it without charge, either to me or my insurance. I have no idea if they would consider that but, to me, it's worth a try.

In other news, I've had a recurrence of the bladder bleed, complete with small clots over the past few days. As of today, Friday the 16th, it seems to have resolved, at least for the time being.
It resulted in my not being able to pass urine for a while but a trip to the ED was averted because I was able to self-cath.
We are not sure if this has anything to do with my being on Xarelto® as an anticoagulant. I guess time will tell.

Not much more to comment on till after we get the heart data.


Cheers!


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

Wednesday, November 09, 2016

Big News!!

Dear Diary,

I had my follow-up visit with Dr H, the surgeon AND WE HAVE A DIAGNOSES!!

Turns out St. Joe's ran my stuff by a few more high power players including the Mayo Clinic.

The diagnoses is chronic passive congestion. This is a new one on me so I really can't comment on it much. There is also evidence of old clot material (blood) on some of the smaller pulmonary arteries

The next step is to make an appointment with the pulmonologist and cardiologist and develop a game plan on how to treat this. The disease, at this point is not fibrotic but may become so if we don't treat this. How effective treatment will be is unknown.

The stickler here is the cardiac myxoma may be influencing this to a more or less extent and we can't take it out until my lung function improves, if it ever does.

So that's where we stand at the moment. I'm going to have at least one glass of wine now.


Cheers!


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

Thursday, October 27, 2016

Insurance & Treatment Issues

Dear Diary,

Feeling really depressed today. I spent part of the morning researching my upcoming insurance options for 2016. It appears there aren't any!
My current plan is no longer being offered and my government subsidy that we have been relying on is going to be reduced significantly, partly due to my wife's new part time employment.
I looks like average monthly premiums with either private insurance or Federal programs are going to be around $2,000/month. We are currently paying around $300.
Since premiums that high effectively negate our monthly income, it appears that I will have to go without health insurance. With my current health the way it is, that is scary!
If my PSA continues to rise as it has over the past few months, it is expected that I will begin hormone therapy in the form of Lupron/Casodex, probably every 3 to 6 months'
Lupron is running about $2,000/dose. Not sure about Casodex but is most likely very similar.
Even with insurance, these drugs are far above our budget.
Unless something can be done to regulate these insane prices, tens of thousands of people are going to suffer and die, well before their time, myself included.
The key, I guess, is to try and hang on for another two years so I can get Medicare. Even if Hillary does get in, I doubt that she'll be able to pull off  an early 'buy in'.

I guess my next entry will be next week, after my lung biopsy. Not sure how long I'll be in the hospital this time. After that, we will need to address the heart surgery if it appears that I'm strong enough.
If anyone out there has a little extra cash, any donation to https://www.medgift.com/open-heart-surgery-for-dave helps. We will never be able to pay off my medical bills in our lifetime but we will keep trying!
Thanks so much to those who might consider helping us out as well as those who already have.


Cheers!


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

Friday, September 30, 2016

Let's Play Musical Surgeons

Dear Diary,

Ok. Whoever is following this journal, please disregard the previous post regarding my new surgeon and the date and location of the procedure. They have been cancelled.
To make a long short, it turns out that Dr A's office failed to get a prior-auth from my insurance company before they scheduled my surgery. Now I get a call from the office a couple of days ago saying that they were going to have to cancel the procedure because the facility wasn't contracted with my insurance. Great!
So they referred me to a surgeon at St Joseph's which, is contracted. We sent all my records over to their office, the surgeon reviewed them and promptly referred me to his partner, an oriental lady with excellent credentials. I will see her on the 12th for the initial consultation after which maybe we can actually get something accomplished!
I need to remember to remind them to get the prior-auth in a timely manner.

In other news...

I have discovered that I can go off O2 and survive very well on room air all day if I wish. I'm not really sure what this means in practical terms but I like it.
This is not to say I'm no longer desatting because I still do on exertion. It's just that for some reason, I don't seem to desat on room air when I'm sedentary which I did a few weeks ago.
If I do anything more than mild exertion I still use 3 liters to avoid serious desatting.
I'm hoping this is not just a temporary improvement.


Cheers!


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