I’ve been plagued with the Humpty Dumpty syndrome in the past few years…and all the King’s horses & all the King’s men can’t do squat for me.
Diabetes Type 2… legally blind due to diabetic retinopathy…chronic kidney disease, stage 3…minor heart ailment…worst case of arthritis (everywhere!) ever…no cartilage in my neck due to Degenerative Disk Disease…bone-on-bone in both knees as well as 2 torn ACLs & a torn Meniscus ligament in my right one…bad back due to damaged L4 disk…deteriorating right hip…unable to get knees & hip replaced due to MRSA…bouts of gout…diabetic neuropathy…high blood pressure…high cholesterol…ED…anxiety & depression (duh)…anemia…torn rotator cuffs in both shoulders. All medically diagnosed & confirmed.
But after my last surgical experience in November of 2017…I went in for a “routine” hernia operation, but after a successful surgery, I almost died twice, once when my kidneys totally failed & again, when I needed an emergency tracheotomy & assisted breathing…I simply refuse to undergo the knife again.
Unless, of course, I’m unconscious or something.
At one point, I had 11 different doctors & specialists that I was seeing. I’d often meet my “annual maximum expenditures” on my health insurance before Spring arrived!
So, as one could easily imagine, I’ve absolutely had my fill of illnesses & ailments.
It had to be that I did some truly horrible things in a previous lifetime.
Was I Ivan the Terrible? Hannibal Lecter?
(Silence of the Lambs)
But I’ve certainly had my fill, thank you!
So, it wasn’t too cool when I visited my nephrologist, Dr. Matthew Schaefer (“my kidney dude”) & he had this pretty serious look on his face when I came in for my regular 3-month check-up.
“I’m concerned about your numbers”, he told me. He’s usually pretty upbeat & pleased to see me. I always try my best to bring a little levity to the situation so I was a little worried this time.
“We’re going to have to do something about adjusting your meds.”
I have complete trust & confidence in Dr. Schaefer. He first helped me after my colostomy takedown surgery (where they reconnected my plumbing after 18 months of wearing a colostomy bag) when he was called in as I experienced some serious kidney issues.
He’s been my kidney doc ever since.
He spoke about how he was gonna reduce this one med while increasing this other one…then he mentioned my potassium level.
“It had always been right around 5.2, the upper limit for this stuff, but your recent blood work shows it at 5.7…I’m very concerned!”
I know I’ve heard about potassium before & once, a couple of years back, my potassium reading came back high so my primary care physician had me take this powder for 4 days, then take another blood test.
It returned to a normal level & nothing else was ever said.
“I understand my potassium’s high & all, but what exactly does that mean? I mean, is it gonna eventually kill me one day?”
“No, it doesn’t work that way. It won’t kill you over time like other stuff.”
I felt a little relieved.
“No, but it can kill you all at once! Just like that & you’re dead!”
I love it when my doctors don’t sugarcoat stuff or mince words, but this one somewhat caught me by surprise.
“It can kill you immediately…just like that! Poooof!
“I just had a new patient in here about 2 weeks ago. About the same age as you, similar physique & everything.
“His blood test showed a very elevated potassium level. We talked about possible treatments.
“He walks out of the office later & drops dead right in the parking lot there!”
“Was it your breath, Doc?” I asked, trying to add a little humor…poorly, I’d say…back into a serious situation.
“That’s how potassium works. If the level gets too high, it’ll just stop your heart immediately! I don’t think we want that happening here.”
He reviewed various options with me as I said that I’ll do whatever is necessary to avoid a similar parking lot incident.
We settled on this “patiromer” powder, manufactured by Veltassa, the same stuff I had later for 4 days a couple of years earlier with my PCP.
I asked him why this wasn’t this “perfect solution” routinely offered to, and accepted by, every patient with high potassium.
He mentioned something about “quality of life”. I didn’t quite understand what he meant.
But when I was checking out with his nurse & making my next appointment, I asked her about getting a prescription for this Veltassa stuff as I remember my other doctor writing me one for a 4-day supply.
Right at that time, Dr. Schaefer emerged from his office & handed me this form to sign.
“What’s this for?”
“I’m going to submit your name for a special grant from the manufacturer to cover the cost of the medication. It can be very expensive & is rarely covered by insurance.
“Maria’ll give you some samples we have to cover you until your application is approved.”
I thanked him & Maria profusely for all their help.
As it turned out, Veltassa claimed that they never received my application & Dr. Schaefer had to submit another one on my behalf.
Meanwhile, they provided me with samples for over 5 weeks!
I did a little research & discovered that I would have to pay at least $850 for a month’s supply of this medication! Now, all it costs me is a $25 co-pay & it’s delivered right to me at home.
God bless Dr. Schaefer & his wonderful staff…and Veltassa for their wonderful program!
And while I’m on the topic, a giant “Thank You & God bless!” goes out to my retina specialist, Dr. Juan Rubio & his incredible staff for all they’ve done for me.
As I’ve mentioned, I’m legally blind as a result of my diabetic retinopathy.
When I was living in Ohio, I couldn’t work any longer & my COBRA medical insurance coverage ran out.
I simply couldn’t afford my insulin…that ran over $1500 a month, even with private insurance (before I hit my deductible & annual maximum)!
As a result, I wasn’t taking very good care of my diabetes & it quickly destroyed my eyes.
Anyway, after moving back to San Antonio in October of 2015, I visited with a close family friend, Dr. Steven Campbell, an ophthalmologist & husband of Jill from Citibank.
My wife, Laurie, babysat their first daughter, Julia, from when she was about 6 weeks old until about about 4 or so when Laurie got really sick with her cancer. We’ve always remained very dear friends with the Campbells to this very day…as beautiful and as loving a family as you will ever meet! Julia just graduated from the University of Texas up in Austin with a degree in biology & will be entered graduate school at the University of Houston to study ophthalmology, following in Daddy’s footsteps.
Her beautiful younger sister, Caroline, was valedictorian at Marshall HS here in San Antonio & just completed her freshman year at UT.
I digress…as I always do.
Steve examined my eyes as I was having a lot of problems with my right eye specifically. Upon inspection, he immediately referred me to a trusted colleague of his, Dr. Rubio of Retina Associates of South Texas.
Years ago, after Laurie’s death in 2001, I began seeing her doctor (Dr. Sybil Morgan) for my own health concerns, especially since I hadn’t had a regular doctor since I was a kid. She diagnosed me with high blood pressure, high cholesterol & diabetes type 2. As a result, I had undergone several laser treatments on my left eye at her urging.
But after several years, when my oral medications no longer proved effective in controlling my diabetes, I was switched to insulin by Dr. Douglas Thompson in Columbus, OH.
Then I couldn’t work anymore & stopped taking my insulin regularly.
So, I go to see Dr. Rubio in Nov ‘15 & he sees a LOT of damage. To both my eyes.
He recommends a rather-new medication from Eyelea that’s injected directly into the eyeball!
(Note: You haven’t lived until you’ve had one of these! I’ve been poked so many times for blood draws & IVs that they really doesn’t bother me much. I’ll grit my teeth & just look away. No big deal.
But with these particular injections, they put some contraption over your eye that physically holds it open. You can’t even blink. And, naturally, you can’t look away or simply, “stop lookin”!
You see it coming & even though they’ve applied numbing ointment & stuff, you feel it! And you can actually see the liquid entering your eye!
Of course, these injections are not covered by health insurance. Eyelea does offer a discount to patients with health coverage, from $4,399 per injection to about $2,200, but that’s still a hefty price, especially when you have -0- income (as I was depleting my savings & didn’t start receiving SSA Disability payments until late 2017).
Dr. Rubio graciously gave me a free sample he received from the manufacturer…thank God!
And then I worked with Dorothy on his staff to apply for a financial grant from a foundation for patients with macular degeneration & other related optical ailments.
It covered a year’s worth of Eyelea injections, normally given every 5-6 weeks in alternating eyes.
Come 2017, I received the devastating news that the foundation did not receive enough government funding to continue distributing these grants to needy patients.
But then they informed me that the manufacturer, Eyelea, had a grant program similar to the one I qualified for with Veltassa for my kidney medication.
And it carried only a $5 co-pay.
After a few weeks, I found out that my application was approved!
And then, in January of this year (2019), I had another “bit of excitement” with regarding to these treatments for my eyes.
I changed health insurance carriers from Blue Cross/Blue Shield of Texas to Ambetter from Superior Health Plans.
Little did I know, but my grant program with Eyelea had to be approved by my insurance company as they actually shared financial responsibility with the manufacturer.
Those were some very anxious moments this past January & February as I awaited word from Ambetter.
There was even a visit to Dr. Rubio where he didn’t do anything since the application status was still up in the air & he had no more samples on hand.
I finally got word in March that it was finally approved…as told to me by a new member of Dr. Rubio’s staff.
But when I received an “Explanation of Benefits” in the mail from Ambetter (“This is NOT a Bill”) a few weeks later, I just about died when I read the part where it said, “You may owe your doctor this amount > $2,679”!!!
Did she give me the incorrect information about my app being approved?
I was actually afraid to call, fearing the worst & actually waited for my next appointment in about 10 days to find out what exactly was going on.
As it turned out, that’s the way the process worked with Ambetter. They issue this (very misleading) “Explanation of Benefits”, saying you owe all this money to the doctor. But the doctor will merely forward it to Eyelea where they then do whatever they have to do with Ambetter.
Everything was fine with the grant program.
I was just so scared as that’s not the way that BCBS handled it previously.
I’m so incredibly grateful to all my doctors & these two generous companies (Veltassa & Eyelea) ss I’m convinced that, otherwise, I’d probably be dead or at a minimum, completely blind.
And then you wonderful people wouldn’t hafta to suffer through these ramblings of mine…
Thank you again for listening!