The Mayo and Me

Just the beauty of the campus is healing

After returning to this blog, I immediately went on vacation, it's my way of letting you know that I'm just as useful as your senator or congressional representative. I have been inundated with military, political, medical, theological, and familial issues over the past few months and had to step aside to deal with them. I'll be dealing with them here too, and unlike real life, here I can deal with them one by one at my leisure.

Let's start with Medical. 

Twice a year I make a pilgrimage to the Mayo Clinic. Since leaving Denver and the care of the angels at National Jewish Health for my lung issues, I've been seeing Dr. B at the Mayo Clinic in Jacksonville (or "Jax" to those of us who get tired of spelling it 8 times a day). Mayo Jacksonville is a big, sprawling campus with four (I think, maybe more) huge buildings dedicated to helping shattered people with shattered bodies. Just the landscaping with tropical trees and plants, streams and lakes, is so beautiful that I will park as far away from the main building as possible so I can meander through the lush scenery, and sit in the shade by a cooling fountain and have a chat with God.

Not having to carry an oxygen tank is so wonderful, especially with my back issues that sometimes just standing is too painful to do long. My lung issue is a very rare condition called Pulmonary Hypertension, the capillaries in my lungs are restricted causing the transference of oxygen between the lungs and my circulatory system to be restricted, which in turn causes me to run out of breath quite easily. Even down here in Florida where the barometric pressure of the atmosphere is so much higher than in Denver making it easier for me to breathe, a flight of stairs is a fond memory. I can still make it up the stairs, I just have to go slow and stop several times to get my blood/oxygen level back up. It's called Pulmonary Hypertension because the restriction in my lungs (Pulmonary) causes the blood pressure in my heart to skyrocket (Hypertension) putting a strain on my heart. Using an echocardiogram and occasionally sticking a probe in my heart, my doctors can determine the blood pressure in there. For healthy you the reading is 8 to 12 mmHg. For me it's 35 mmHg.

Don't let the word "Hypertension" trip you up, my blood pressure reading at my arm this morning was 100 over 60, "normal" is 120 over 80. I don't have high blood pressure, I'm a carrier. 

I give it to other people.

Pulmonary Hypertension is defined by the WHO in several groups by whatever is causing the PH, Group 1 is Pulmonary Arterial Hypertension, it can be idiopathic, or genetic, or drug induced (meth and cocaine are the leading drugs) Group 2 is is caused by left side heart disease, Group 3 is caused by lung disease: COPD, Sleep Apnea, high altitude exposure, etc. Group 4 is caused by lung obstructions, Group 5 is due to what ever is left over, hematological (blood disorders like anemia or sickle cell)  or metabolic disorders like thyroid disease. 

When I first came down with breathing difficulties I was diagnosed with left heart failure so I was put into Group 2 and was seeing a cardiologist. At the same time I was seeing a Pulmonologist for COPD and Sleep Apnea while living at high altitude so I was also put into Group 3. Then one day Dr. Awesome gave me a d-dimer test which came out positive for blood clots, somewhere in my body.  I was transported to Sloppy Joes for a dose of radiation, aka Radionuclide imaging. I was injected with radioactive material and went for a ride on the CT machine and sure enough, I'm now in Group 4, and I start seeing a PH Specialist, Dr. Chicago, who put me on a drug called Adempas. Very rare, very expensive. It costs $300 a pill, I take three pills a day, and it REALLY, REALLY works! Most of that cost is underwritten by the manufacturer Bayer, making it affordable for me, so naturally I start to bristle when I hear someone complaining about Big Pharma yet having no idea what they're bad-mouthing.

Fast forward several years, I've learned to live with an oxygen tube in my nose 24/7, but it wasn't needed when I went to Florida to visit my folks. With Adempas I can live a normal live in Florida without oxygen. I had a lot of time to think about it because a Comcast bigwig came to me and said "Doug, you look tired. Why don't you take the rest of your life off?"

I said "I would rather not."

Comcast the heartless corporation said, "That wasn't a request." Who's going to hire a 60 year old disabled veteran with lung disorders? NO ONE. Even the VA was hesitant to deal with me. 

Last January COVID 19 is starting it's 2020 World Tour, Nancy Pelosi and Chuckles Schumer are working hard to insure that President Trump's warnings of a global pandemic are laughed at by their mind numbed followers, and I'm shoveling two feet of snow off my driveway while on oxygen. Not a young person in sight to help. I said "That's it, I'm sick of this, I'm selling my house and moving to Florida."

My next door neighbor asked, "How much do you want for the house?" I told him and he said "Sold." Six months later we're living in Florida and I'm seeing Dr. B in Jax Mayo. 

A few months ago, after all my semi-annual testing and imaging, Dr. B and two other highly skilled doctors, Dr. Uff Da, and Dr. Imaging, came to me and said "We can fix you."

Wait, what? PH is incurable and progressive. I was stunned.

"MOST PH is incurable and progressive. We can fix you."

I said "Doc, only a portion of group 4 is fixable!" Which is true. PH strikes maybe 0.5% of the population, and maybe 1% of that 0.5% have what is called Chronic Thromboembolic Pulmonary Hypertension. It's the rarest of the rare. It's the checkered Zebra of orphan diseases.

Dr. B said "Bingo!"

I have CTEPH? I don't remember a doctor telling me that, Dr. Chicago just said that I have "A weird PH." So I looked up my medication, Adempas, and it only works on two things, Pulmonary Arterial Hypertension, which I know for a fact that I don't have, and  Chronic Thromboembolic Pulmonary Hypertension, why didn't I look that up when I first started taking it? Because I got hung up on the side effects, which are many and amazing. Doctor B informed me that CTEPH can look like Group 2, and my COPD and Sleep Apnea were really non-players, so Group 3 is not affecting me, it's all the CTEPH.

They can fix my lungs.

How do I deal with that? Dr. Uff Da was shocked that I didn't jump up and kiss him, but Dr. B understood. Here I am, thinking I'm incurable, stumbling to my early grave, but through a very dangerous operation they can cure me? Believe me, if you suddenly get the same news, your brain is going to lock up too. I told Dr. B. that I have to pray on this, because the operation IS very risky, and I have a wife to support. Dr. Uff Da thought I was being ungrateful for his magnificence, but Dr. B understands, and he knows who my higher authority is.  

I walked around for months wondering if that was a dream. This all happened back in February and I'm just now finding I can speak about it publicly. It's almost like a Stockholm Syndrome that I have with this disease, I'm almost afraid to let it go. I am afraid to tell my friends in my Pulmonary Hypertension support group, I have to tell them that while they get worse and slowly die an agonizing death, I'm not going to be there with them, I'm going to get better, and I'm having a really hard time dealing with that.

The operation to clean out my lungs is called a pulmonary endarterectomy, it's a big, ugly procedure that I'm not sure I want to endure. I'm over 60 years old, so I don't have much longer anyhow, do I want to go through all that so I can stumble into years of dementia and Alzheimer's comfortably? So I continue to pray for guidance. 

The problem with praying for guidance is that God gave us brains for a reason, like a good father who is helping his child with their homework, He can't hand us the answers. He needs us to exercise our faith to make it stronger just as our algebra homework exercised our brains to make our understanding of mathematics stronger.

Don't be surprised when you ask God for guidance and His answer is "You can figure it out, I gave you the tools you need to make that decision.