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.
My body has been falling apart .
Diabetes. Legally blind. Chronic kidney disease. Arthritis everywhere. Degenerative Disk Disease. 2 torn ACLs & a torn Meniscus. Damaged L4 disk. Deteriorating hip. Can’t get knees replaced. High blood pressure. Anxiety & depression. Plumbing’s gone (😭). 2 torn rotator cuffs.
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 about to meet my Creator.
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 must’ve been that I did some truly horrible things in a previous lifetime.
Was I Ivan the Terrible? Hannibal Lecter? Sister Mary Virginia?
But I’ve certainly than my share, 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 my visits, but this time, things were very different.
“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) in Feb ’16 when he was called in as I experienced some serious kidney issues post-op
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 something about my potassium level.
“It had always been right around 5.0, 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 few years back, my potassium reading came back high from a blood test so my primary care physician had me take this powder for 4 days, then take another 💉.
It returned to a normal level & nothing else was ever said.
“I understand my potassium’s high & all, but what exactly does that mean? Do I hafta give up bananas? 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 somewhat relieved.
“No, but it can kill you all at once. Just like that…
*he snapped his fingers*
…and you’re dead!”
😱 😱 😱
I love it when my doctors don’t sugarcoat stuff or mince words…seriously…but this one completely 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 there in the parking lot!”
“Was it your breath, Doc?” I asked, trying to add a little humor…very poorly, I might add…back into a pretty 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.”
“You mean ‘here with me’, right? Not necessarily, ‘right here in your parking lot’?”
He reviewed various options with me as I said that I’d do whatever was necessary.
We settled on this “patiromer” powder, manufactured by Veltassa, the same stuff I took a couple of years earlier with my prImary-care doctor.
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.
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 a few weeks later, Veltassa (the manufacturer) claimed to have never received my application so Dr. Schaefer had to submit another one on my behalf.
Meanwhile, they kept providing me with additional samples for ~5 weeks!
I did a little research & discovered that I would have had to pay at least ~$900 for a month’s supply of this medication! Now, all it would cost 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!
(Note: Since the time I first wrote this essay, Veltassa has since changed their grant program & there’s no possible way I could afford it, especially since I barely get by on my monthly SSI Disability payments… and nothing else.
But I also did a whole lotta research on how to prevent high potassium & drastically changed my diet. Now, I’ve totally eliminated (or greatly reduced) an incredible amount of different foods…bananas, yogurt, coffee, potatoes, beans, nuts, dark green vegetables, oranges, melons, many types of fish, whole wheat bread/pasta, dairy products & DOZENS of other foods…from my diet.
Between that & my diabetes, I have about 6 different things in total that I’m allowed to eat.
And while I’m on the health 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 & macular degeneration.
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 well over $1500 a month, even with private insurance (before I hit my annual maximum)!
As a result, I wasn’t taking very good care of myself, much less 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 optometrist & husband of Jill from Citibank.
My wife, Laurie, babysat their first daughter, Julia, from when she was about 6 weeks old until about the age of 4 or so when Laurie got really sick with 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. (Note: It’s now almost 3 years later & they’re both still doing incredibly well! ❤️)
I digress…as I always do.
Steve examined me as I was having a lot of problems with my right eye. 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 from the time 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.
And when she urged, you DID IT!
But after several years away from San Antonio, when my oral medications no longer proved effective in controlling my diabetes, I was switched to insulin by Dr. Thompson in Columbus, OH.
Then I couldn’t work anymore with my body falling apart & stopped taking my insulin regularly.
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 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!
Very, very freaky.)
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 limited income & -0- resources.
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 sufficient 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.
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 approved!!!
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”!!!
Was I given the incorrect information about my app being approved?
I was actually afraid to call, fearing the worst & actually waited for my next appointment 10 days later 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 merely forwards it to Eyelea where they then do whatever magic is necessary 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) as I’m convinced that, otherwise, I’d probably be dead or at a minimum, completely blind.
(I’m now covered by WellMed, a subsidiary of UnitedHealthCare, for my Medicare Advantage Plan and they cover 100% of all eye-related care, including office visits, all tests & treatments, all injections & both f my eye surgeries! I’ve been approved for, once again, a special program.
And while I haven’t needed many injections from Eyelea recently, I regularly receive different shots in my eyes to control the constant bleeding I experience.
Fun, fun, fun.)
I’m just so very, very grateful for all the wonderful medical professionals that somehow, some way, keep me going! They’re all in my prayers every evening…as well as so many of you guys! ❤️ 🙏🏼 💪🏼
Once again, thank you so very much for listening!