Wednesday, March 26, 2014



I know I have been mostly absent from this round of #ROW80. JC has had heart chronic trouble, now leaning into the acute and I suspect that the Medical-Industrial Complex in this here United States does not give one good Goddamn about that fact. The man is 67 years old and is not in the best of health. What he HAS done is owned a business and paid taxes for 40 years and he is entitled to Medicare and a Supplemental Insurance plan that cares for him and will not put every fucking roadblock in our paths when it comes to getting him treated.

In December, he was admitted to Tampa General Hospital for pneumonia. It was scary for me; it always is. He's gone and I'm by myself and it's just weird. When he's home, he's a rather quiet, and benign presence, watching TV, or sitting on our front porch, or spending time with Alex. He overeats, at times, but who doesn't? He's diabetic and I get on him when he eats too many treats, but the man deserves some pleasures in life. We spend time talking and laughing and take walks when he's up to it. The point is, he's a human being and he deserves to be treated as such, with all the dignity and compassion one would treat a person, no matter what the age or condition of his health.

When he was in TGH for pneumonia, we were both sick with something that was not the flu; I kicked it, which was odd, because I had COPD, which I manage diligently, but I am 58 and in good shape. I quit smoking at age 54; I was sick with congestive heart failure, and malnutrition and could not walk. After another blood transfusion of 6 pints, in 2010 (I had one in 2004) and being told I would not walk again (I was either going to walk, or take myself out, and when someone tells me i am NOT going to do something, I prove them wrong) I re-learned how to walk and walk quite well. I manage my COPD very well too, and thus was able to kick this lung infection on my own, but JC's lungs are weak because of his heart.

By the time I got him into the hospital, which took two days of Alex and I pleading and nagging, his kidneys were starting to fail, which told me that he was starting to die. It is so frightening to hear that, but it was so hard to get him to go; men can be so stubborn. He was there about 2 days; they ran intravenous antibiotics and sent him home with a 10-day supply of a sulfa-based drug. He was supposed to have a follow-up x-ray for the pneumonia, but the supplemental insurance company denied that. We plowed on.

JC, a wonderful, funny, caring human being; not to be tossed aside like garbage and certainly worth more than 511.00 a month! When did we start putting a dollar value on lives?

JC seemed to be getting a little better, but was complaining about nausea and stomach pains. He mentioned this to his Primacy Care Physician (PCP) who kept changing his stomach medicine and his blood pressure medicine, which was making him feel sick. He was going through nausea and dizziness, but with all the medicine the doctors have prescribed for him, it's hard to tell what is a real symptom and what is being brought on by the medication. I have a PCP whose overall goal (and mine) is to lessen the number and dosages of medicines I am on, and I haven't felt better in decades. I should mention at this juncture, that JC and I both have the same supplemental insurance company.

Anyway, on February 24th, JC had an appointment with a Gastroenterologist, who after taking his vitals, said, "I'm not going to run any endoscopies on you until you get a clearance from you PCP. I don't think you're heart is up for this." When JC called me to tell me this, I naturally hit the roof, and told him, "You need to go to the ER, RIGHT NOW!" Of course, he didn't and he came on home. I enlisted Alex's help and we got him into the hospital the following day. The cardiologists ran some tests and found that he needed a catheterization, which they can run through the wrist now. However, the blockage and a previous stent were so calcified, that they were unable to bust their way through, so we were left the medicinal option, to start, before attempting a bypass. 

All well and good, up to this point and I understand these things; I worked in a Teaching Hospital for several years. It may be more apt to say, "I asked a lot of questions in a Teaching Hospital for several years," because while I was supposed to be working, I was actually busy learning, because all of that shit's fascinating, and those doctors (from the Latin docere, "to teach, instruct, or point out.") were eager to answer my questions, even if I wasn't a Medical Student! I learned a lot, and not just about the body and the body's systems, but about various treatments of diseases and conditions and what avenues are taken before the surgeons step in. But, I digress.

The medicinal option, since the stent one didn't work, includes a  protocol of channel blocker medicines and a blood-pressure medication and one medication that we have moved heaven and earth to get approved for JC, and have been blocked every step of the way. Since he has been home from the hospital, I have spoken to Medicare, his supplemental insurance plan innumerable times. I have talked to the hospital, innumerable times. When I went there for my own infected eye, I talked to them. We are unable to get this one drug. I have done research on it, and it is VITAL to his treatment and preventing a much, much more expensive and dangerous, heart bypass. WHAT THE FUCK IS WRONG WITH THE HEALTH CARE SYSTEM IN THIS COUNTRY????

The facts are these: Here are the 3 drugs he is currently taking to treat the blockage in his heart:

Plavix,  used to inhibit blood clots in coronary artery disease. 

Imdur, used to prevent angina pectoris cause by coronary artery disease.
Amlodipine is a long-acting calcium channel-blocker used to lower blood pressure and to treat anginal chest pain. Like other channel-blockers, it does so by relaxing arterial smooth muscles, which decreases total peripheral resistance and therefore reduces blood pressure.[1]

The last drug that we are completely unable to make any headway with through any agency, be it insurance, doctor, hospital, or Medicare, has a website that OFFERS financial assistance for payment for the drug. 

Ranexa, or Ranolazine

The drug is to be used in CONJUNCTION with his amlodipine and offers the best chance of breaking open the current blockage in his heart, with the EXCEPTION of a heart bypass and is a fuck-ton bunch of money less expensive than a heart bypass! Let me repeat that, a FUCK-TON! Although the drug is a whopping 511.00 a month for 60 500mg pills, that is far, far cheaper than the cost of a one, two, three, four, or five-bypass surgery of the heart!

What in the name of Blue Jesus are the Insurance Companies thinking? Apparently, not much at all, because these are the same Goddamned wizards who told me, AFTER a "Pharmaceutical consultation" that I was taking topamax for seizures, when I distinctly told them I took it for bipolar. I DO NOT have seizures, although now may be a good time to start. Un-fucking-believable! 

They have not only denied JC's appeal for his Ranexa, they have sent along a not-so-helpful "What To Do" letter. Take a look at the following:

Even with my less than artful assistance, you should be able to tell that the supplemental insurance company has provided the 3rd party name of the Arbitrator, the street address, P. O. Box, but no City, State nor Zip Code. I suppose I could do a reverse-search and am quite skilled at doing so, as I am in the business of practicing the dark art of finding things and people who wish to remain hidden, but really, Insurance-Company-Medical-Industrial-Pharmaceutical Complex? Do I have to do your fucking job for you? Or should I just go ahead and launch a cyber-attack on you and fuck up your systems? That is also within the realm of the possible. I am capable of many things and my patience is being pushed to the limit. 

You all, on the other hand, seem to be practicing the fine art of obfuscation, pass-the-hot potato, it's-not-my-job, I'll-get-back-to-you-in-a-day, oh-it's-the-heart, of course! it's important! and then NEVER being heard from again. Alex and I, JC and I, and I, myself have spent countless hours on the phone, running to TGH trying to get the ONE Goddamned drug Ranexa (that works with the other 3 drugs COMBINED) approved so that JC can see a cardiologist in ANOTHER county, because? Because, our Supplemental-fucking-Insurance DOESN'T have a cardiologist in our Network in THIS fucking county! Unreal! This is goddamned Florida, where the median age is 187!

I am on the young age of the scale here in Florida and yet, our supplemental insurance plan doesn't have one measly cardiologist in Hillsborough County! JC has to go to Hernando County to see a Cardiologist on the Fourth of April, who will tell him "Sorry, I can't do anything for you, because you're not taking Renaxa!" How fucked up is this?

I cannot tell you how freaking, goddamned livid I am over this! It was bad enough when I had to wait two years for Medicare to kick in, AFTER I was declared fully disabled, and Florida Medicaid is next to useless, because, I had to incur 960.00 in medical bills EVERY month, before Medicaid would pay a dime. I was only getting 1160.00 a month; what was I supposed to live on? 

I am NOT going to game an already broken system, so I suffered with Parkinsonism, and COPD, doing the best I could with a very shrewd PCP and a great psychiatrist. I had assholes for neurologists who did more to get me Baker-Acted (yeah, you, A. C. Gipson) then they helped and when I found one that helped, I hung on to her like gold. Dr. Deborah Burke is the primary reason, I am able to do everything I could prior to my overt e.t. onset. That system is already fucked up beyond repair, so why make it worse?

When I got my Medicare, I faced a different set of challenges, because I am NOT 65, but they are workable and my goal has been to get healthy and stay there, primarily for myself, but because this system is so goddamned horrible! JC should lack for nothing and the fact that he worked for over forty years and paid his taxes should mean something! When people get old and sick, it's not time to throw them out into the garbage. I feel like yelling "Attention Must Be Paid!" This is unconscionable and people should notice this and care, because it's not just JC.

It's not just JC, or me. It will happen to anyone who gets caught up in this system. I was not always homeless. I had a home and a husband. I left the husband to preserve my health. With the paltry divorce settlement, I tried to buy another house; it was a rent-to-own and the owners went bankrupt. I lost 30k and spent two years trying to save the house. The bank took it. I worked from a house I rented, as I could no longer drive. I ended up homeless, sick and in a shelter, after 2 months hospitalization. I received my SSDI after a record 5 months, which is practically unheard of. 

The point I am trying to make is this; this is not a rarity. This is not unusual. This can happen to anybody. Everyone is abled at some point in their lives; for some, the dis- part just comes a bit quicker. What is so wrong about this is the non-action and the corruption within the system. I am appalled at what we have experienced with this. JC has recently gotten hearing aids at 3,000.00 a pop. No fuss, no muss. These are not necessary to maintain his life; his quality of life, yes. I will grant you that, but being deaf will not kill him, since he's not out killing bison for the family dinner. 

Lack of heart medicine will kill him, or you, or your father, or mother, or me. This is ridiculous. To have to go through this kind of run-around for ANY drug is stupid. But I think I may have found a way to shorten the red-tape. While running around and looking for the symptoms and treatments of chronic angina, I ran across this site and called these people at I spoke with David and explained what we all had gone through to me again. Since we had already done it, we're at the part, where we just fill out the forms, the doctor signs and faxes them back to the Pharmaceutical company.

Believe it or not, you do have to go through ALL of the Appeals and Denials, up to the final part, where you write the appeal to the address (non-address?) above. He assured me that if I get the forms filled out and signed by JC's primary and faxed to him, they will pick up the cost of the drug, and JC will have an out-of-pocket cost of 5.00 per month. Which I will do, stat. As encouraging and so much better as it made me feel (I was in tears) it was also disheartening because my own doctor, in another network, has been doing this for me for over 2 years. I will get this done for JC and get him transferred over to my network; it should be noted that over this whole ordeal, his primary doctor just up and left him, with no word that she was leaving. 

IF you ever have a situation come up like this, I urge you to go firstly, to the drug manufacturer's website and see if they do not have a coupon. In some cases, you can print out a coupon to be used with prescription, until a required authorization is given. If anyone has any questions, or thinks I can be of any guidance, don't hesitate to contact me. I've learned a little bit swinging around on these ropes! Good luck! 

UPDATE:  JC's PCP approved his medication, Ranexa on 3/27/2014, a full month after his discharge from TGH. This should never have been an issue to begin with, because my PCP, Dr. Satya Kurakula, routinely signs off on my pre-authorizations for my COPD medications, as does my psychiatrist. This indicates to me that, of course, his PCP does not care, so after JC sees his cardiologist, who is in Hernando County on the 4th of April, we will be entertaining the idea of transferring him to a new PCP, preferably to my PCP! For everyone who responded on Facebook, I thank you for your kind wishes, love and support. JC stood by me when I had to wait for two years for my Medicare to kick in and for my diagnosis for parkinsonism and during my "celebration" of Mental Awareness Month in March of 2012, which was, um. . . rather interesting! But then, that is what unconditional love is. . . I'm just glad it worked out and I didn't have to go and take any doctors hostage, or have the screaming-meemies and have poor JC have to call the TPD and Fire Rescue. He's got enough on his plate right now.


Hilary Melton-Butcher said...

Hi Viola .. I can only wish you both the best at what is obviously a very stressful time.

JC looks wonderful and I love that photo of him ..

With thoughts .. Hilary

Viola Fury said...

@Hillary, thanks for stopping by and thank you for your kind words. We actually got the medicine approved for him and he was able to get his Ranexa on Friday, March 28, 2014. It is just unbelievable to me that we have had to go through ALL of this for something so crucial!

I am on medicine for COPD and heart failure and my Primary Care doctor gets and signs approval authorizations regularly. I fear it is more the network he is in, than any actual failure with hospitals/insurance companies/Medicare and so, after he sees his cardiologist, we're going to be seeing about having hims switch Primary Care Physicians; no one should have to go through this much turmoil, especially someone with a heart condition! Thanks again! Mary xoxo

Anabel Marsh said...

Apologies if this comes out twice. I tried earlier to comment but I think my iPad ate it! It makes me so angry that you and JC had to go through that; also angry that other Americans have to go through that too (and I've read plenty) and that our UK government seems hellbent on destroying our NHS which has worked to prevent this happening here for decades. Best wishes to JC for a speedy recovery.

Anabel's Travel Blog

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