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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.


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

Thursday, September 22, 2016

Cardiac Update - Visit With The Surgeon

Dear Diary,

We saw my new cardiac surgeon, Dr A today for our initial pre-surgery consult. The outcome was pretty much what I had expected. He feels very uncomfortable going in for the myxoma with my lungs in the shape they're in. Says I have about a 6 or 7% chance of dying. He is worried that they wouldn't be able to wean me off the ventilator post-op.
He feels that the current risks of open heart surgery far outweigh the risks presented by the myxoma for the foreseeable future.

All that being said, he does not have an issue with getting a wedge biopsy of the lung tissue. That will involve laparoscopy and a breathing tube when I wake up. The big plus is that I don't get my chest cracked open. Thank goodness for small favors!  ;)
With a little bit of luck, they will then be able to positively identify what the hell is wrong with me. Then the issue will be can it be reversed or do I stay oxygen dependent for the rest of my life?
I will get the biopsy done on October 12th at Banner – University Medical Center Phoenix .
Hopefully, I will not be in the hospital more than a couple of days.

I'm back to using my spirometer on a regular basis to see if that helps increase my lung capacity. The last time I got sick with that 24 hour flu like illness, I lost 50% of my capacity. I'm hoping it won't take too long to get it back.

I should be getting some feedback from the cardiologist and the pulmonologist within the next few days. I'll post updates as I get them.


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

Friday, September 16, 2016

Pulmonary Test Results

Dear Diary,

We just got back from my follow-up appointment with the pulmonologist. This was where I get the results of the 'body box' and the arterial blood gas tests.

Believe it or not, there is a little bit of good news. The results from the pulmonary function testing shows that my total lung capacity has increased from 28% a year ago to 60% now. This is very good.

Blood gases indicate that I am not retaining CO2 which is also very good.

We have also pretty much ruled out IPF (Idiopathic Pulmonary Fibrosis) I have been told, however, that if we do nothing about this lung issue, it will ultimately end in IPF.
The wedge lung biopsy which will be performed during the heart surgery will be 95 to 100% definitive as to what is wrong.

I have now been ruled healthy enough for cardiac surgery which, barring objections from the surgeon who will perform the procedure, will take place within a month. I see the surgeon this Thursday and will have more interesting news then.
As I mentioned in a previous post, the pulmonary people's main concern is how long I will have to remain intubated before I can breathe on my own. To me, that's a little bit scary.


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

Friday, September 09, 2016

Real Quick Update

Dear Diary,

I had my lung function test yesterday. Won't know the results until this Friday when I see Her Highness.
Still need to get an ABG (arterial blood gas) done. Could have gotten it done yesterday but the hospital/insurance interface was fucked up, as usual.

Looking forward to the upcoming appointment with Dr A, the cardiothoracic surgeon on the 22nd.
Hopefully, I will live that long. This is getting old...real fast!!

I am preparing myself to hear the worst. "We cannot operate on you because you would likely not survive the procedure".

I just don't want to leave my wife alone. She has done so much.


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

Sunday, September 04, 2016

Sharing My Annual Update For YANA

Dear Diary,

Hi folks,
This is the latest update since August, 2015. I really wish I could say all is well but that is not the case.

Since the end of the IMRT treatments in 2012, everything has been ok in the sense that there have been no catastrophic issues to deal with.

In July,2015, I began to notice blood spotting in my urine. Went to my primary Doc who thought it might just be a UTI.
Things went well for a couple of weeks till one morning, I went to void my bladder and it was pure blood!

In an effort to avoid writing a large book about what happened during the next year, I am going to just give the facts with short commentary.

Turns out, I have radiation induced hemorrhagic cystitis. It appears that during treatment, the beam took a little more than intended and the bladder lining was essentially "burned". This resulted in the formation of new blood vessels in the bladder lining which are extremely delicate and tend to bleed if disturbed at all. This issue wound up requiring two separate surgeries, a week apart to control. Quite honestly, it was pure hell for awhile. I still have occasional spotting if the perineal area receives any significant pressure e.g. bike riding.

To make matters worse, the cancer is back. PSA was fairly stable for nearly three years. My last test, around a month ago revealed that it doubled in three months. 0.8 to 1.8. Not good.
If, in fact this is a true trend, we will probably start ADT in the form of Casodex first for a month or so and then begin Lupron. I am not looking forward to that! At this point, we do not know where the cancer is located and it is way too early for scans. Am I scared? I guess, a little bit but I have at least two other potentially life threatening conditions running concurrently and the cancer is the least formidable of them.

Now, the answer to the big question. If I had to go through all of this again, would I change anything?

Actually, very little. Please bear in mind that my case is somewhat atypical and most prostate cancer patients will never go through this nonsense.
What I might do differently would be to use radiotherapy in the form of Brachytherapy (seeds). Surgery, in my case, was not curative and I was left 100% impotent as well as 100% urinary incontinent. With brachy, you don't have issues like positive margins which seems to be what got me.

Most importantly, make sure you know and understand all your options when you are diagnosed. I moved far to quickly out of fear. Even if it is a highly aggressive tumor, it is not going to kill you today, or next week or even next month. Taking one's time, within reason, can avoid a lot of unwanted side effects.

I honestly have no clue what my future holds. I just play it a day at a time.
Cheers to all the members of our unique club!  -- Dave Robbins


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

Friday, September 02, 2016

Today's Pulmonary Appointment

Dear Diary,

The appointment with the pulmonary tech was pretty uneventful. She recommended I go back on the steroid inhalation powder for the next two weeks to see if it resolves the tickling in the upper chest.
She gave me two sample boxes the last time I saw her. (Free is good!) I've used it before to see if it would affect the dyspnea. It did not. We'll see if it works for this.

We scheduled a 'body box' test for the 7th. This will assess my current lung capacity. This is not to be confused with a 'body bag', ROTFL!! I have had one of these before. (Not a body bag, a body BOX!)

Here's What It Looks Like.

We will have a follow-up appointment on the 16th.

We also scheduled an 'ABG', (arterial blood gas) test because the one I had months ago may have been incorrectly done. The blood draw was done on O2. It should have been drawn on room air.
Buncha clowns over there, I say!

Her highness, the tech, explained to us that the primary mortality issue in my case is is whether I can breathe on my own when I come out of anesthesia. According to her, if I can't, they will simply keep me mildly sedated and intubated until I can.
She said that unless I have had a bad experience with anesthesia before, which I have not, that scenario would be highly unlikely.

I guess that sums up today's action pretty well. Wishing everyone a safe and happy Labor Day Weekend!


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

Thursday, September 01, 2016

Mini Update

Dear Diary,

Sorry about the lack of entries lately. To be honest, not much has happened since my last post.
I'm off the Levaquin®, hopefully for good. I still have that annoying tickle in my upper chest which makes me cough when I inhale deeply. O2 sats are still poor and I am still using O2 at the rate of 3 liters/minute most of the time.

I'm seeing one of the pulmonary team tomorrow regarding the tickle and cough. I want to see if I can get her to prescribe some kind of inhaler to see if it might open my airways a little bit.

We may have finally found a cardiothoracic surgeon. We'll refer to him as Dr A. He was suggested by Dr J, the pulmonologist. We have verified that he does take my insurance but I won't be able to get an introductory visit until near the end of the month. More on him later.

My wife has secured a part time job as a deli clerk at Fry's. This will provide a little bit of greatly needed cash. It won't pay the medical bills but it will keep us out of  the local soup kitchens.

More later.


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