After yesterday’s doctor visit, having to go to yet another doctor seems like charging up the same hill — and there’s a guy at the top with a machine gun. Nonetheless, gotta do it. I still don’t know where to put my head. I feel like I carry poisonous genes and have passed them down the line.
But, speaking of wan, I’m still in the process of trying to work my way out of anemia — the last of the repairable issues on my medical agenda. I’ve actually found an iron pill that seems to work and doesn’t make me ill. I’m not taking enough of it, I know, but it beats out the nothing I was taking before.
I’m beginning to really resent DNA.
Isn’t what you inherit supposed to be a sort of grab-bag? You get some of the stuff, but not ALL of it? Because I seem to have collected everything and be in the process of passing it along.
The good news? Yesterday’s doctor seemed to think that I didn’t look particularly anemic now. My gums have stopped being pale and that’s a good sign. Now all I have to do is worry whether or not I’ve managed to pass everything along to another generation. Or two.
So feeling wan? Literally and figuratively. At the same time!
Intrepid will always be the name of one of Horatio Hornblower’s ships. Somewhere in my 20s, I discovered Horatio Hornblower … and that’s how I learned that there was an actual use for trigonometry! If only they had mentioned this in school, I might have had a clue what I was doing instead of random calculations used to reach an answer that meant absolutely NOTHING to me.
We probably should have named The Duke “Intrepid.” He is quite the intrepid voyager. Except he likes when we come out and let him IN the yard, even though he jumped out. I guess out is easier?
Today I am off to see the wizard, also known as my cardiologist. He’s a new one. I’m trying to finally shake off Boston and get all my physicians lined up locally. Boston made the news the other night as officially (who is the official calculator of such things?) having the worst traffic of any city in the U.S. Not in the world. I think there are quite a few cities in Europe (and how about the traffic in London!) that could compete.
Boston has gotten terrible. When I moved here in 1988, traffic wasn’t great, but you could get from one place to another and generally even park when you got there. Not any more. Not only can it be impossible to get there, but if you do parking will cost the price of feeding two people for a week. Or more.
Bad. Very, very bad.
We spent something like 50 billion dollars to remodel our road and I swear they are worse than they were before we spend more than a decade redoing everything. The thing is, they move things around, but they didn’t make them bigger. Just stuck them underground (cough, cough, cough) or straightened out the crooked pieces. So we’ve got nice straight bumper-to-bumper traffic.
Boston traffic is only for the intrepid.
We’re away shortly. As we head for UMass, a mere 20 miles away, call us intrepid. Also, please hope they don’t find anything new or interesting.
Recently, Tom’s cataracts started to give him problems driving at night. He began seeing large halos around the headlights of the oncoming cars, which made driving a challenge. He went to the eye doctor who told Tom that his cataracts were ‘ripe’ and it was time to get cataract surgery in both eyes.
Now, no one looks forward to someone slicing and dicing their eyeballs, but Tom was borderline phobic about anyone touching his eyes. We had two close friends who had recently had the surgery and they both reassured Tom that they had felt nothing during the procedure and little if any discomfort afterward.
Tom listened to them but didn’t believe them on some level. So he procrastinated about scheduling the surgery – and procrastinated, and procrastinated.
When he finally scheduled it, he didn’t feel good about it. He worried more and more as the surgery date drew near and he reached a peak of panic the sleepless night before D-Day. On the ride to the surgery center, as well as in the waiting room, Tom kept repeating that he really didn’t want to do this. I began to worry that he might make a run for it.
Of course, Tom had to wait endlessly at the doctor’s office before he was finally taken in for the seven-minute procedure. So by the time he saw the doctor, his blood pressure must have been off the charts. Fortunately, along with buckets of numbing drops, they gave him some ‘good drugs’ to relax him.
I waited anxiously in the waiting room for an hour before he came out the other end. During that time, I saw a veritable parade of post-surgery patients, smiling in their identical pairs of unfashionable sunglasses. I relaxed as I realized that no one seemed freaked out or even stressed.
So I was not surprised when Tom reappeared, gushing about what a weird but not unpleasant experience it had been. As he had been told, he felt nothing but water being pumped into his eye. He saw strange lights and heard psychedelic music, which made it all feel like a mini acid trip.
Fresh out of surgery, his eye was blurry and totally dilated, and he felt like he had a grain of sand in his eye, but he could already tell how much better his vision was. Everything was brighter and clearer, especially colors. Tom said it was as if he had been looking at the world through a yellow filter and suddenly now he was seeing everything in vibrant, living color.
We bumped into an old friend in the waiting room who was coming in for the same surgery. Tom went on and on about how awesome his vision was now and told his friend not to worry but to get ready to be amazed at how colorful and sharp the world is.
By the next day the dilation was gone and even though only one eye was fixed, Tom’s vision was dramatically improved. He no longer needed his glasses for distance vision but will still permanently need reading glasses. Not a big deal. He also could see that our sunroom was painted bright blue, not green or teal. And he was telling everyone what a miracle he had just experienced!
It was that kind of day. We needed some food, but no money comes in until next Thursday, so we are flat broke … but prescriptions still need to be filled. I sent Garry to the store with a list and a reminder that we are seriously broke, so ONLY get what’s on the list.
Also, I had to reschedule a hospital appointment because they’ve deferred me so often, the original tests are two months old and I don’t even know if I’m still anemic or it has bounced back to normal. I’ve been on the edge of below or slightly above anemic most of my life so it wouldn’t surprise me if I was now back in the normal range.
I have no complaints about the medical care at UMass Memorial, but getting an appointment in a reasonable amount of time is crazy. Garry got in fast because … well … he knew someone. That’s right. He had an old connection from his working days. I, on the other hand, do not have a connection. Worse, UMass is the kind of place where they don’t listen to you.
I have seizures. Short, limited, with a quick bounce back — but still frightening. I thought, after the last one, I should see a neurologist. Garry, who has the hell scared out of him, agreed. My doctor agreed. We all agreed, but I could not convince any neurologist at UMass to see me without requiring I get a head MRI first.
My doctor and nurse couldn’t convince him either. He was dead set on that MRI, even though I would probably have all my problems solved because following the MRI, I’d be dead.
You see, I have a metal pacemaker in my chest. Even being in the room with MRI equipment would kill me. Literally, would tear the pacemaker out of my chest and leave me gored, bloody, and dead. I can’t prove it because apparently, I’m not mentally equipped to explain my medical problems on my own.
So I never saw a neurologist. Never talked to one. Never heard from anyone. It has been months, maybe close to a year. Every time I get a bit dizzy, I’m terrified I’ll have another seizure, but since I can’t see a neurologist without dying, I figure I’ll have to live with the seizures.
And now, it’s time to change cardiologists because Garry and I are getting too old to haul our asses into Boston. I need a local doctor. Even though I can and did completely describe my heart surgery — all of it — I still have to prove it. PROVE IT?
How do you prove heart surgery? Can’t they just call Beth Israel and get the records from them? I may have the records somewhere, but they aren’t “legal” if they don’t come from the hospital. But we have all these medical privacy laws, so they can’t GET the records without a lot of transferring of paperwork.
Meanwhile, I still have to go to the lab and get my tests redone and maybe (MAYBE!) they will be done before I go to the hospital where they will take my entire medical history again and it will be the same as the ones they’ve taken before including all my medications.
ALL of this information — everything that has ever happened to my body — is in their computer including the heart surgery, both replaced heart valves, the bypass, pacemaker, and cardiomyectomy. They have the serial numbers for each implant (I am full of serial numbers) and serial number for both of my breasts that are ALSO implants. I will never be an unidentified corpse on a slab because all of my body parts have their own USB code. Unless they fix that computer, too.
Everything has been put on their computer. But, since they “fixed” their software program, they can’t find anything.
And then there was the telephone which doesn’t work and the ten pounds of mail I have yet to finish sorting.
That’s been my day. How has yours been? You have to admit that only a determined 72-year-old woman could make it through this sort of day. When I was done, I cooked dinner. Mussels with spices, tomatoes, Worcestershire Sauce on angel hair pasta. And I cleaned up, too.
When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself. You need to learn everything you can to survive — legally and, if necessary, illegally. You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.
Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.
Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance. The fight to start COBRA coverage was immediate. Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act). There may also be other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.
While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance. Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company. They finally offered COBRA and the state came through with payments. This was the value of a knowledgeable case manager, but the process took time.
The interval during the battle for coverage brought other concerns. I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out. That is when I learned about “other” assistance. This kind of assistance is spoken of quietly by those who are desperate, but can be trusted. It is the kind of help that takes place all over our region, and probably across the country too.
My case manager told me he might be able to help with some drugs, but not all. When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed. He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this. Ever. I left and kept quiet for years. The agency he worked at is gone now, and I don’t know what happened to the case manager.
He had gone to a pharmacy that had secretly offered help. When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser. This tactic is illegal, but many will run the risk to save lives.
Helping One Another
Not all managers are so resourceful or willing to run such risks. Strictly speaking, it is against the law — dispensing drugs without a license. There are individuals in support groups who are willing to assist with drugs, when no one else can. For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.
In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client. That agency no longer does this or will even admit they did it for many years. They could be shut down just like the agency referred to above.
Drugs are collected in many ways. If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.
The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.” Those fighting the disease can not imagine throwing out drugs that can help others. Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.
“Healing those who seek my help”
With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit. A doctor knows the prescription of a patient and will generally learn in private conversation who needs help. If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.
The High Cost of Drugs
HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day. Few drugs have generics and even those are expensive. The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month. Patients receiving various assistance programs are terrified of health care “reform.” Out of necessity, we help each other.
When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken. I went to a pharmacy, who sent me to a local physician who spoke English. I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.
Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground. Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.
People without insurance die.
This is not a political opinion. It is a fact.
NOTE: Since the author isn’t available to answer questions, comments are “off.” I can’t answer questions because I don’t have any answers, sorry.
A lot of people figure that everyone “retires” on their own terms in their proper time. That hasn’t been true in our world. Certainly not in Garry and my world. Garry lost his job because the company he worked for decided to move on without “the old guy.” I lost my job because my bosses son needed one.
Many of the people I know were “laid off” which feels exactly the same as getting fired, except there’s no legal reason for it. They just feel like doing it. In Garry’s case, it was clearly age-related. In mine, it was just smarmy.
I’ve known at least half a dozen people who got forced out of jobs they’d held for as long as 40 years. They had no preparations for retirement, no significant saving, and no plans. They all figured they’d work until they hit the official “date” … but it didn’t turn out like that. Not even close.
All the awards you want … but no pension you can live on.
Garry, after 31 years at channel 7, was shown the door in literally five minutes. When he came home, he looked like he’d been bludgeoned. I should mention that Owen lost his job during the same week. It was a hell of a week.
I hadn’t been at that job for very long, but the boss had me “showing the kid” how to do the job. Sneaky. I was in my 60s. There wasn’t another job waiting for me and I was ill.
For two years, we lived on what Garry got as his union payout. No medical insurance — and I kept getting sicker. He was miserable too. He was terribly depressed and demoralized — while I was wondering if I was going to die.
He went to rehab. I found a doctor who would treat me for free and actually invented a surgery to “fix” me because I was very broken. We had no money. To keep afloat for those two years before Garry got his pension and I got disability, we refinanced the house multiple times which bloated the mortgage payment to an impressive amount we couldn’t pay. There was the HARP Program — which Obama started. The problem? The bank didn’t have to let you into the program. Great program, but all you could do was beg. Weird, right?
I had been negotiating with them for months. When finally I got cancer in both breasts, I called and said, “Well, now I have cancer. Can we please get into the program?” I think I actually shamed a banker because a couple of months later, our mortgage payment dropped by $1000 a month. That was the beginning of survival.
I found a doctor who treated me for free. A hospital that never asked for payment. A bank program that cut our mortgage in half. Finally, Garry started getting Social Security and his (very small) pensions … and I finally got Social Security Disability. We went from having no money (blessings on food banks everywhere) to almost being able to make it through a month.
I remember the day when we no longer needed the food bank. It was a small, but meaningful triumph.
Garry stopped drinking. I didn’t die.
These days, when I hear how people are melting down over getting laid off from their jobs and basically losing everything. I’m sympathetic … but mostly, I figure they’ll get over it. Not immediately. Eventually.
You have to get over it. It’s a terrible time. We went for two years without any income. None. Zero. Nothing. Whatever little we had put away disappeared. Somehow, we survived and damned if I know how. I got any help I could from anyone who gave help. I don’t even know how I did it. We are both alive — and we still have the house. At some point, Mass Health (our version of Medicaid) kicked in. It was the idea on which Obama built his medical plan.
It was designed by our Republicangovernor. That’s one of many reasons it baffles me that the GOP has been so against it. It was their program.
Most people don’t get to retire like in the movies, with or without the gold watch. We get ditched, usually around age 59, typically 6 months before pensions fully vest.
For all of you who got dumped because you got “too old,” yes it was illegal to let you go. It’s call ageism, but it’s done all the time. You can sue, but unless you’ve got money to live on while you sue, by the time you get paid off — and you will get paid off — you’ll be up to your lip in debt.
Did we have mental meltdowns? Sure we did. That’s why Garry needed rehab. I would have been more melted down, but I was trying to save my life and it was sheer luck I bumped into a doctor who introduced me to another doctor who took me in. I was days from my demise by then.
If you have had a life calamity and everything gets taken away, it will take a couple of years before you pull yourself together. It’s not just your finances that take a hit. Your soul gets maimed. Your self-esteem goes down the tubes.
When anti-medical care legislators say “no one dies from lack of medical care,” that’s bullshit. Lots of people die without care. They don’t get written up because they aren’t in the hospital or seeing a doctor. They just die. Kids, old people, and all the others in the middle.
Why am I talking about this?
Because those of us who had this terrible disaster overwhelm us need to know we aren’t alone. It wasn’t just us. It’s lots and lots of people many of whom used to be solidly middle class before their world collapsed.
So try to remember one thing:
It gets better. Somehow, some way, it gets better.
Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.
The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.
The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.
I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?
Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.
That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.
The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.
Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.
Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.
I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.
I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.
I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.
I want to be able to move and not spend most of my life fending pain.
I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.
So, following the holidays, it’s time for a long, complicated talk with the doctor.
I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.
Sensible ideas are welcome. I have choices to make and it’s time to make them.
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