Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts

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

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

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

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

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!


Cheers!


"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.


Cheers!


"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.


Cheers!


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

Thursday, October 20, 2016

Finally, The Lung Surgery Is Scheduled

Dear Diary,

The last time I posted, we were on track to see the new surgeon, Dr H, at St Joe's. The appointment went well and the wife and I were duly impressed with the surgeon as well as her staff.

We now have a date of November 1st at 7:00 am to do the biopsy. I will go in the day before for the pre-op testing. Dr H will try to do the procedure as minimally invasively as possible. This would involve video-assisted thoracoscopic surgery (VATS). If this proves impractical, she will then do a full thoracotomy. Depending on the procedure and any associated complications, my stay at the hospital should be anywhere from 2 days to a week. The procedure itself is estimated to take around 45 minutes to an hour, barring complications.

During the initial meeting, we were warned that there was a possibility that the biopsy might not be diagnostic. We are keeping all our fingers crossed that that is not the case!

As I mentioned previously, we are holding off on the heart surgery until we get a good handle on this lung issue. Holding off is a bit of a risk but it is one we have to take.


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

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.






Cheers!


"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.


Cheers!


"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.



Cheers!


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