Showing posts with label Information. Show all posts
Showing posts with label Information. 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

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

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

Thursday, June 22, 2017

Joining The 'ADT Club'

Dear Diary,

A brief update to my last post.
Saw the Uro today and am now officially in 'Club ADT'.
Took my first dose of Casodex 50mg and have a follow-up appointment in 30 days.
At that time, we will start Lupron as well. I hope this will 'reign in the horses' for at least a good while.

As far as the bone scan, he agreed that there was nothing there that was obvious at the present time.
We talked about the merits of additional scans and his opinion was that yes, we could do that, and we would have additional information, however, the
treatment would be the same regardless of the results. Opinions?

Lupron will be about $1500 per injection twice a year. Insurance shouldn't have a problem covering that...I hope.
If they do, we will have to resort to bilateral orchiectomy to hopefully achieve the same goals.

It's not confirmed yet but it's apparent that I have graduated to stage 4 and there is no stage 5 so you figure it out.

* sips bourbon*

All I can really hope for now is that something else takes me out before the cancer does.

It's been a trying week as I am also suffering from excruciating lower back pain unrelated to the cancer. Got some Tramadol from the Uro so maybe that will help. The pain is wearing me out!

*sips more bourbon (no Tramadol involved)*

On the good side, my weight is closing in on 260lbs which is wonderful. I look and feel so much better. Even the wife notices! LOL!

Nothing more to say until I get depressed again.



Cheers!


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

Wednesday, June 14, 2017

PSA Update

Dear Diary,



I forget whether I mentioned this earlier but my PSA is now increasing by leaps and bounds.

The last 5 PSAs are shown below.

0.8 as of 9 months ago.
1.8 as of 6 months ago.
1.6 as of 3 months ago
7.3 as of 05/15/2017
9.3 as of 06/14/2017

Because of the size of the jump, I had another PSA done to rule out an error. Unfortunately, there was no error. In fact, it went from 7.3 to 9.3 in four weeks. Not good!

Uro appointment next Thursday. I will have A DRE and we will discuss the pros and cons of

Casodex and Lupron.

The cat is definitely out of the bag. We just don't know where it is.

I'm thinking we need to start ADT ASAP and worry about the PET scan later.

I'm still thinking that this may be local recurrence in the prostatic bed.

Definitely not a happy camper right now! 😞
 
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, June 01, 2017

Urologist Appointment Update



Dear Diary,

Just got done with the appointment with Dr.F. He spent a lot of time with us and was encouraging but he agreed it is time to act.

He wants to start with a full body bone scan which I will have on the 8th.

Based on those results, we will then look into more sophisticated imaging.

He is a little frustrated because, as always, he has to go "toe to toe" with the insurance to get this stuff authorized.

If the bone scan is positive, we will initiate ADT. Casodex followed by Lupron.

If it is negative, we will have to make the decision of whether to start ADT anyway or to watch the PSA a little longer.

I imagine this is where the MO (Medical Oncologist) comes in. I flat out forgot to ask him if he felt it was time to bring one in!

The options regarding more sophisticated types of scans/imaging are all on the table as far as he is concerned. It's just a matter of getting them paid for.

If there is no visible spread and the disease appears to be still localized, I am interested in taking this to the next level to try to locate and isolate the active area(s) and possibly looking into HIFU (High-Intensity Focused Ultrasound) to try to clean up whatever is left.

I don't know if that will be an option for me in the future but right now I want to concentrate on proving what exactly is going on in there and treating it accordingly.


Cheers!


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

Tuesday, May 23, 2017

Gone And Messed Myself Up Again!

Dear Diary,

I guess it's time to get off the benzos and booze. I'm up to 11 oz of bourbon/night combined with 2mg clonazepam just because my PSA doubled twice in three months. I'm sitting here at midnight wondering if and when I'm going to die and what that's going to be like.

It seems I'm failing every treatment they try and, to me, it looks like I'm going to follow in my father's footsteps, wasting away and screaming in intractable pain at the end.

With all that's going wrong, I'm never going to see my little granddaughter or my son and his wife which really depresses me.

We are now so far in debt that we will never come close to paying it off in our lifetimes.

Below are some pics of those who I may never see again.


My granddaughter, Arabella




My son Chris, my daughter in law Abbie and guess who.
Really sorry for the depressing post but I am trying to get myself and my beloved wife and family ready for reality.
If anyone reading this thinks I am deliberately over-dramatizing my situation, please remember that I don't pay you to read this stuff. This is real life whether you or I like it or not.

Am I feeling sorry for myself tonight? No, just lonely and sad.

Cheers!



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

Sunday, May 14, 2017

Short Update

Dear Diary,

Tonight will be a very short update. (the crowd goes bananas!)

I have a virtual shitload of labwork coming up on the 15th. It's possible that I have a bladder infection probably due in part to somewhat careless intermittent cathing. They're going to do a urine culture to see if there are bacteria in there. My urine has been more or less cloudy for weeks.

Other tests are a CBC and a PSA (standard edition). I'm hoping it has stayed relatively stable over the last three months.

I'm told that the other testing ordered by my pulmonologist is to make sure the new diuretic, spironolactone isn't trashing my kidneys.

More after I get the results back.


Cheers!



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

Sunday, April 30, 2017

Sunday News

Dear Diary,

Today, I start the new drug, spironolactone, for the pulmonary arterial hypertension (PAH). It will probably take a few days to a couple of weeks before it becomes clinically active.
The docs, especially Dr. O, seem to feel that I'm nor fully "dried out" yet so this is another diuretic to be taken daily in conjunction with Lasix™. We'll see what happens.

I have an appointment set up for a routine PSA blood draw on 5/15 and one on 5/16 to see my new optometrist. It's been forever since I last had my eyes checked and I can't see worth a shit so I guess it's about time.

Tomorrow, I'm going to call my health insurance company and see if they can tell me if my annual deductible has been met. I find it hard to believe that it has but certain providers have not been charging the usual $50 co-pay that applies to specialists. One even said that it had been met.
If it has been paid, this would be a financial windfall for us this early in the year. I have a lot of large medical expenses coming up and that would greatly offset the financial hit.

General overall health is not remarkable so far. No disasters. (knock on wood!)

I'm sort of dreading this coming month. Our '72 S-10 is due for emissions testing and this year, it has a leak somewhere in the system. If they pick that up on inspection, the truck won't pass and the repair costs will most likely tap our coffers big time! We are trying very hard to save a little bit here and there for just such emergencies but it's very difficult on an income of SS + 1 part time job.

Oh well, I guess that's what growing old in America is all about nowadays!


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

Wednesday, April 12, 2017

Recent News

Dear Diary,

A few short updates.

First off, over the past couple of months, I've intentionally lost 18 pounds. (yes, Atkins works)
Losing even this little bit has significantly improved my ability to breathe. In other words, I'm now getting more 'bang for the buck' from every liter of o2.

I now have a portable o2 system consisting of 'M' tanks and a backpack for them. This arrangement now allows me to drive again. YAY!
The system uses an o2 conserver which delivers o2 in pulses, on demand rather than continuous flow.
Depending on my level of activity, it looks like I'll get about 1.5 hours @ 3 lpm on average. More than enough to do errands on.

I am also no longer taking valsartan for BP control as it was lowering my diastolic BP into the 40s and making it difficult to even move around. Also, so far, most of the back pain is gone. This is one of the side effects of valsartan.

Right now, I am probably the healthiest I've been in over a year! Let's hope the trend continues.

Seeing my cardiologist this Friday to get his take on all of this.



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

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

Tuesday, February 21, 2017

Urologist Visit

Dear Diary,

So...here we go on a Tuesday night. Both hemorrhoids and bladder are bleeding profusely.
Self-cathed this morning and then at the doctor's office. Seems to have caused an irritation of the bladder neck. The damn Xarelto® is not doing me any favors right now.
We all elected not to do another scoping as he felt that doing so could easily exacerbate the condition.

He said my urine was a mess containing blood, albumin, sugar and bacteria to mention a few. I could have told him that much. He sent it off to the lab and we should get the results back within a week.

He has provided me with all the equipment I need ti handle this at home with the exception of a foxy little nurse to handle my pecker. Of course, the wife might frown on that!   Lol!

Last but not least, I have started back on My ketogenic diet. This time it's Atkins®. It worked well for me last time but I didn't stick with it. My goal is to lose 90 pounds it a year. Wish me luck!


Cheers!


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