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Monday, November 21, 2016

Today's Appointment With Dr. E And Lab Reports

Dear Diary,

Saw my GP today. Went over a bunch of stuff. He is happy with my A1C which was 6.4%. He says he's happy with anything under 7%. If he's happy, I'm happy.  :)

The PSA was down from 4 months ago. 1.8 to 1.6 now. Quite a surprise there as I had fully expected it to have doubled again. Not really sure what's going on there.

The rest of the lab work was unremarkable.

I had him do a DRE just to make sure there weren't any new changes to the prostatic fossa. So far, all seems to be well at that end.
I haven't spoken to my RO yet regarding the PSA results but I suspect he will want to wait at least another 3 months before we consider ADT.

I officially began taking Xarelto® today. I guess that means I won't have to keep going back for INR testing every couple of weeks.
Because it has a different mechanism of action, we are hoping it will help to clear the remaining micro thromboemboli from the affected arterioles.
I see Dr. K, the pulmonologist in a couple of weeks. Hopefully, he will have gotten approval for the drug he wants to use to treat the pulmonary hypertension.

If I don't happen to post anything before the holiday, Happy Thanksgiving to all!


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

Saturday, November 19, 2016

Update From Last Thursday

Dear Diary,

We saw the new pulmonologist, Dr K last Thursday. Nice guy. He believes that, now that we have the biopsy results, we can actually develop a plan of action for this never ending saga.

He wants to begin by getting me off warfarin and on to Xarelto® (Rivaroxaban). I was supposed to be on this from the beginning however that proved impossible due to the OTC price coupled with the fact that my insurance wouldn't cover it.
Interestingly, Dr K was somehow able to get coverage for me which will last until I change insurance at the beginning of the year.
He is also going to directly treat the pulmonary hypertension issue with another drug that we need to get a pre-auth for.
Right now, we're waiting for records to be transferred to Dr K from St Joe's.

I'm still having significant pain from the procedure. It gets a bit wearing toward the end of the day.
I'm trying to stay as active as my lung capacity will allow which isn't that much but I guess anything is better than nothing.

I have an appointment with my PCP, Dr E on Monday. We will be discussing my latest labs as well as my current PSA. 


"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.


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

Tuesday, November 08, 2016

Day 7, Election Day

Dear Diary,

Well, I pretty much caved in today and used my oxycodone. The pain level has been greater than 7 out of 10 for the past few days so I'm trying that to see if relieving the pain helps my ability to breathe.

We got the preliminary surgical biopsy report back yesterday. It was unremarkable. The specimens will now be sent to at least a couple of other labs for verification and there are several other tests for molds, fungus and other environmental agents currently pending.

As far as the election goes, the mood at Casa del Robbins is less than joyful. We do not have the luxury as some do of leaving the country in the event of a Trump win.
The left has had ample opportunity to act against the right wing insanity but has failed to do so.
Each successive generation seems to be dumber and weaker than it's predecessor. There is more to life than extreme sports, video games and Facebook. Wake up people!
We are losing the first president in decades with enough courage and intelligence to clearly understand and act against the problems our country faces.

Now a Catholic Church in California has declared that anyone who doesn't vote for Trump will be damned to Hell.

I rest my case!


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

Sunday, November 06, 2016

Day 5

Dear Diary,

It's now day 5 since the biopsy and I still feel like I was hit by a truck. Respiration is about 50% of what it was prior to surgery. I'm trying to be good about using the spirometer at least 10 times/hr.
Still hard to get a good night's sleep because I normally toss and turn and it is very painful to do that right now.
I have a script for oxycodone w/acetaminophen but I haven't filled it yet. The main goal right now is to get my poor lungs back to where they were before the procedure...minimally.

It may be as much as five weeks before we get any results back. I really hope this wasn't all for nothing.

The bladder has returned to normal function after hosting the Foley for three days. I'm very surprised and very grateful that it didn't start bleeding again.

Time for me to take another break.


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

Friday, November 04, 2016

Lung Biopsy Done

Dear Diary,

I finally arrived home last night (Friday) from three days in the hospital. They removed 3 small wedges from different areas of the right lung. We all hope that this will be diagnostic in regards to what's been going on with my respiratory system for almost all of the past year.

For all of my millions of devoted followers who may be curious, yes, the two to three days post- op period hurts like hell! This was a visual assisted thoracoscopic procedure (VATS) where they make a few small incisions and go in between the ribs with a camera and remote biopsy tools.

The procedure went well and I was in ICU between 3 and 4 hours. The extra time was because they also did a right heart catheterization to rule out pulmonary hypertension. This was a good idea because it turns out I do have moderate PH.

I'm going to keep this update real short because I still have significant pain and fatigue.

More later.


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