Showing posts with label Procedures. Show all posts
Showing posts with label Procedures. Show all posts

Sunday, October 29, 2017

Cardiac Catheterization Update

Dear Diary,

Well, we had an interesting day yesterday.
Spent nearly the entire day in the St Joseph's Hospital cath lab.
We went in at 1 p.m.for what should have been a 20 or 30-minute procedure at 3pm and wound up getting out around 7pm.
Apparently, they had several heart attacks come in on an emergency basis so I was sort of left to last.
When I finally got in, I had the best suite they had available. The whole procedure took about 15 minutes and it was no more traumatic than getting a dental cleaning.

The real good news, however, is that the pulmonary artery pressures are down, significantly from the last procedure in January.
The pressures in January were in the low 70s and they are now in the low 40s which is very good. We still need to get them lower but this shows that the sildenafil is definitely working.

They did some special testing to find out whether the pulmonary vessels were reactive or nonreactive. Apparently, they were at least mildly reactive which gives me the possibility of being able to use different medicines if necessary.
At any rate, the wife and I are both very pleased with the results, so pleased in fact, that we stayed at the hospital and had dinner at the cafeteria.
We almost never go out to eat you see! :-)

The other good news is that the wife's hands are healing perfectly and the numbness in her fingertips is going away much faster than we expected. She is ecstatic!

All this excitement is being posted a few days after the fact due to server issues with blogger. Anyway, the wife and I are now back to sitting out on the front porch in 100% wonderful weather so I really don't give a rat's ass!


Cheers!


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

Sunday, October 22, 2017

I'm Still Here!



Dear Diary,

Well! It looks like I haven't posted anything for two months! Consider yourselves blessed.

The wife just had carpal tunnel surgery which appears to have been very successful. She is off work for up to six weeks and I'm encouraging her to take all of it. She deserves it.
When she returns, she should be able to do her job much more comfortably.

No idea what the damn cancer is doing. I'm not due for a PSA for 2 or 3 months. I've been on ADT for about three months now with no major side effects. Makes me wonder sometimes if it's working at all! The interesting thing is that the bladder bleeding stopped about a week after I began ADT and has never recurred. Weird!

I go for another right heart cath this Thursday to see how the PAH is responding to the sildenafil.
The PA pressure last time was a whopping 70. With any luck, maybe it has gone down a bit.

My weight is holding in the low 260s. I'm currently on another diet push to see if I can get to 250 this time. I went off plan for a few weeks out of boredom and gained a little weight back so now I'm back on the wagon. At least my diabetes and blood pressure are doing great and under tight control. :)

A bit of sad news.
Our beloved kitty, Pumpkin passed away peacefully of old age early Wednesday morning, Oct. 18th. He was here with us at the foot of our bed when he passed. As much as we miss him we know he is better off.
We had anticipated this as he was 20 years old. He was our fuzzy baby for 17 of those years.
R.I.P. Pumper!

Pumpkin 1997-2017
I'll update more as I think of it. Right now, I have a bout of fatigue setting in.



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

Saturday, June 24, 2017

I Feel Like I'm Falling Apart

Dear Diary,

The past two or three weeks have been pretty rough. My lower back is acting up again to the point where sometimes I can barely walk. It seems to be a pinched nerve (possibly sciatic) that is causing all this pain and numbness in my feet. I'm currently trying a daily regimen of 1300mg of acetaminophen chased with 50mg of Tramadol three times a day.
It's a good thing we kept that walker from a year ago because I'm really concerned about falling, especially when I'm here alone.
It's unlikely that the pain is associated with the cancer as I've had it off and on for many years.
It gets very wearing though, after a few weeks.

I've also been dealing with untreated dental issues including a huge cavity in one of my front teeth. The tooth finally broke off today. I need two extractions. At my age and income, restoration is not an option. I'm looking into local dental schools who might be able to do it for discounted prices.
Turns out, In America, the health insurance industry considers basic dental care a "privilege" and not a necessity. Therefore, they get away with not having to offer it in basic health plans. Sux!

I'm into day 4 of hormone therapy for the rising PSA. No side effects as yet except the strange urge to dress up in my wife's clothing and hang around in ladies' lingerie departments.
No...wait, that's not a side effect, I've always done that!   ;)

*takes 7 pm meds with water, not bourbon*

Last of all, a shout out to my son Chris, in Italy. Your Daddy's trying to reach you on FB but I get no response. Been awhile since we talked. Call me.


Cheers!


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

Friday, June 09, 2017

Update On Bone Scan

Dear Diary,

A quick update.
Just got the full body bone scan today and the tech said there was no sign of metastatic disease.
Uro still has to see the results but hopefully, he will agree.

The next step, hopefully, is a PET scan to see where the activity is located and find out if treatment options
other than HT are available.

The really good news is that the bone scan fulfilled my entire annual out of pocket so for the rest of the
year, I'm covered at 100% Yay!

Won't know much more till we get the PET scan so I continue to be nervous.


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

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

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

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

Thursday, February 23, 2017

Would You Believe...?

Dear Diary,

Would you believe, yesterday, the day after I saw my urologist, I wound up in emergency for the bladder bleed. It has continued to get worse over the past couple of days and last night I couldn't pee at all.

This occurs on an all to frequent basis. When it does prevent me from urinating, we have to go in to the ED and get CBI, (Continuous Bladder Irrigation) through a three way Foley.
I am very used to being catheterized but this tech was a little rough. They started with a 24 French and then reduced to a 22 French because they couldn't pass the first one through to the bladder.
Even with Lidocaine, it was still unpleasant!

The joke was that I had self-cathed in the restroom before I was called back because I could feel the bladder beginning to fill up. What came out was primarily dark blood and a lot of small to medium sized clots. Damn good thing I came prepared this time!

When I finally got taken back to the treatment area and got hooked up to the fluid, from start to finish which was 2 or 3 hours, there was no blood and no clots whatsoever. I was a little embarrassed because I thought they might think I was faking it.
Actually, they were glad that it turned out that way. They said that I had most likely taken care of the issue when I pre-cathed in the waiting room restroom.

The wife and I wound up getting home around 1:30am. Since then, other than having a sore dick, there have been no other issues. (knock on wood!)


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

Saturday, January 28, 2017

Just Talking To Myself ;)

Dear Diary,

I'm bored today. The wife is at work and I'm here just putzing around on the Internet. The cat is asleep as usual so I'm all by myself.

I got a real nice, encouraging e-mail from one of my long time followers. I was beginning to think that nobody reads this diary anymore. I do admit it's gotten a bit repetitive of late. That's what happens when you get old and start losing it! Lol!

The rain has stopped for a while and it's real nice outside. I want to get out and walk around the neighborhood but I'm worried that I might get mugged, what with being on the oxygen and all.
The 'hood' has been going downhill crime wise for at least 2 or 3 years now.
The wife and I had a bit of a scare recently. We were out walking around the block shortly after dark when a car with a 'Papa John's logo pulled up right beside us. The driver got out and came over and started talking to us. Had me worried that he might want to take advantage of an elderly couple, especially with the man disabled.
Turns out he wanted to pray with us! Christian fanatics...gotta love 'em! I should have tried to extort him by saying that I'd report his behavior to his boss if he didn't give us free pizza!

The wife gets home around 7:00 pm and she's picking up a nice Merlot that we can enjoy this evening. I decided to knock off the bourbon for a while till the time comes when I really need it.
My Doc frowns on my constant requests for Fentanyl /IVpush. I have no idea why!   ;)

I've started using the new scented O2 based on aromatherapy. I find I'm pretty much hooked on 'Pumpkin Spice'!

On another note, I'm hoping that my health will have improved enough by September that I might be able to actually get out and go dove hunting. This is assuming I can even afford a license, what with the ongoing medical expenses we have to deal with.
I really miss being able to get out there in the desert, in the quiet, away from the city. The wife and I used to spend hours out there enjoying nature and then come home with a limit of delicious doves.
Hell, I'd love to be out there even if I wasn't hunting!

*gets up and turns on 'Lava Lamp'™*

Well, it's almost 8:00 now and the wife is still at the store. I put out a steak for dinner and it's calling to me. As I type this, she just sent me a text saying she's on the way home so it will be about ten minutes. Now I'm happy!

Our cat is now on my desk enthusiastically licking my file folders. He is the equivalent of  95+ in human years. I hope I don't start doing that when I'm that old! I'll stick to licking the windows on the 'short bus'.   ;)

I don't usually talk politics on here but I sure am concerned about what's going on with the new administration, especially health care/insurance. I'm eligible For Medicare benefits and the way things seem to be going, I'm not even sure it's going to be there for me!
I just hope the Republicans can get their act together, at least enough to replace the ACA with an equivalent or better plan. People like me are counting on it.
Personally, I think the new administration is moving way too fast on addressing critical issues, but, time will tell.

*pours another glass of wine*

The next update will be when I get home from the hospital on Monday...(and the crowd goes "ahhhhhhh". Yeah...I'm nuts, I know.

I guess I've rambled on enough for one evening so I'll sign off here.


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