As I said, I hate to put myself out there too much here on the blog, because inevitably there is some criticism and judgment, even if it's passive. There's a wide range of ages out here in the decor blogging world, and as an "over 50" blogger (way over), I think we are sometimes viewed more critically. No one wants to be thought of as an over-the-hill, sick person. I think opening ourselves up in the blog world can be majorly intimidating.
So, having put myself out there once again, please be sure that you read my previous post from last week, if you haven't already. Otherwise you might feel like you're walking into a movie at intermission. That first post will give you the background information and you will also understand why I'm sharing all this. I'm just going to tell you my own personal experiences and you can take from it what you'd like. If you see yourself in any of this, please know you're not alone.
Looking back I think the biggest lesson I've come away with after struggling through this last year can be entitled,
"Don't make assumptions"
I've had heart problems for over 12 years. I've had a tendency to think that's been the root of all my other problems. I've had an Internist who is my Primary Care Physician that has felt the same way. Maybe that's been my problem, I've listened to him be reluctant to help me on many of my health concerns because he didn't want to step on the toes of his "doctor friend", meaning my original (former) cardiologist. (I have a cardiologist in St. Louis, but knew I also need one close to home, so this cardiologist I'd been seeing for about a year) There were so many symptoms that could and should have been investigated; many easily looked at through a simple Complete Blood Count test. This attitude has set me up for having to do a lot of digging on my own. I've said before, you have to be your own health advocate, otherwise you fall through the cracks of the system. It's tricky to try to be knowledgeable and informed on health concerns without offending your doctor or being too pushy. I've learned to preface my thoughts and ideas with "can I just share with you my personal thoughts on what I'm dealing with?". Otherwise they tune you out as some kind of amateur hypochondriac looking for a problem. So, for a year I had debilitating fatigue, dizziness, headaches, worsening chest pain, and severe GI problems that went undiagnosed because my PCP thought all my symptoms had to be the result of my heart problems, that he didn't want to get involved in. But here's the hangup, cardiologists don't want or have time to get involved in anything that's not heart related. There is a really big crack and I landed right in the middle of it. I'll just say at this point, that I'm leaving out tons of information, because I don't want to get into all of it. Much of it borders on malpractice and at the least, gross negligence.
"Don't confuse your symptoms"
I started by keeping a health journal and getting specific about what my concerns were. Back in October of last year I started having waves of fatigue and weakness come on me in the early afternoon. I get a full 8 hours of sleep and yet by 1:00 I was so tired I couldn't stay on my feet. Then came the dizzy spells that caused me to have to sit in the floor to keep myself from falling down or passing out. I was counting the days until my cardiologist appointment in early November, trying to wait it out.
Don't ignore symptoms just because they are confusing. I considered Diabetes, and all sorts of things, but blamed it on medications that maybe were too strong, or that I might need a different one. I had the standing appt. with my cardiologist for early November, but guess what? He decided to take a vacay and so my appt. was rescheduled for January. In a panic, I called the office but couldn't get an appointment until the January rescheduled one. I realize now I should have called the nurse, the Physician's Assistant or the Office Manager, anyone but the person that makes appointments. It's their job to keep the schedule, no matter what. Instead I tried to tough it out. The result was spending Christmas in bed because I was too tired and weak to do much of anything. The whole time I was having increasing daily angina and chest pain. I kept my appointment with the cardiologist in early January, but believe it or not, with all my symptoms and questions, they were disregarded and I was told to come back in 6 months. Cardiologists often don't know what to do so they do nothing. I guess he felt like I was just getting worse and that was inevitable. I'd had it. I said "can I have an appointment in 4 months, because I don't know if I'll still be here in 6". OK, the cardiologist said, "Have a nice day". I literally cried on the way home because I felt like I was a goner.
I've had so many problems, for so long, that unless they can prove I'm actively having a heart attack, they ignore the symptoms. I asked for a referral to a Hematologist, and had a visit with one who had just set up the cancer unit in an adjacent town. I had questions about problems with my blood thinner and could there possibly be a blood problem at the root of all these symptoms? But he emphatically said no, "there's nothing wrong with your blood." Interesting, I was diagnosed with severe anemia of an undiagnosed origin, just a few months later. He was busy with his cancer patients and didn't want to take the time to look into my appeal for a fresh eye on new blood tests. Not until I finally went to the ER later in March did things start to "unravel". I was looking at a lot more than heart problems.
"Don't take no for an answer"
By March I was feeling like an invalid. It was all I could do to get laundry done, and throw something together to eat at night. I was afraid to drive because of the dizziness. Finally I'd had it and decided the only way to get any help was to go to the ER and resign myself to 24-36 hours of being shuffled around. I called the cardiologist's PA, and let her know I was going. I had to leave a message on her voicemail. I was afraid that I'd had another blood clot as things were not getting any better.
As I said earlier, if you aren't currently having a heart attack at the ER, you are in no man's land. The last 2 times I've been to the ER I ended up being there over 24 hours without seeing a cardiologist. Stuck in a room, no meds but my own, no food, and no rest. They have a "Hospitalist", who is a general physician who in my case hadn't even read my previous cardiac history and wanted to send me home. I got tough and said, "I've been sick for months, and I haven't had any help. I'm not leaving this hospital until I know what's wrong with me!!!".
A standard chest X-ray upon admission showed I had a Hiatal Hernia, which was big enough to be seen on the film. That was the first indication of that problem. A hiatal hernia is a condition where a portion of the stomach pokes back up through the diaphragm and that causes food and stomach acid to come back up into the esophagus. This can cause severe heartburn and chest pain. I knew I'd had heartburn, but this was a complete other animal. I already had chest pain, but the possibility of a hiatal hernia hadn't occurred to anyone, least of all my PCP. They were talking about me seeing a surgeon. WAIT A MINUTE...I'm not ready for that route, let's look at the other issues, first. I don't want to confuse a hiatal hernia with a blood clot or worse. So next, I met with my PA, who ended up being a lifesaver. She was saying let's do an angiogram and see what's going on. The cardiologist should have been saying this back in January, but for whatever reason, that didn't happen. So that afternoon, they did the angiogram. Most people don't realize this, but you can do all kinds of others tests for blocked arteries, but an angiogram is the only definitive way to see what's going on in your cardiac arteries. Everything else is an educated guess, and you can have stent placement if they see blockages, so it's really the only way to go. It's not fun, but better than being misdiagnosed.
Generally, you're not knocked out during the procedure. You can hear what's going on, but you're drowsy, sort of in lalaland. But I was awake enough to hear the "Oh no!" and later, "we need to call Dr, So and so". At that point I knew I was in trouble. When my husband was called in and we met with the cardiologist, I got the news that both my arteries that had been grafted in during the bypass surgery were non-functioning; not clogged up, but collapsed. This had been my problem since early Fall and no one took the time to investigate, even though I'd questioned my cardiologist about that possibility. My heart bypass surgery was now null and void. Guess there was a reason for the fatigue, and dizziness...not having enough oxygen can do that to you. Can they be fixed? No, but there is the new heart procedure that's available...The Total Chronic Occlusion CTO Procedure for short. They go in your original arteries and roto-root through them. (or only one in my instance) But there's a catch...not everyone is a candidate. I would have to have more tests to find out. And the sad thing is, most heart patients don't even know about this new procedure. It's very costly and time consuming. Usually 4-5 hours on the table, and doctors don't make any money off of it, so not many cardiologists want to go through the training and then talking the hospitals into all the expensive equipment it requires.
Thankfully I had the procedure, and it was successful, but several weeks out, why was I not feeling drastically better? Losing a lot of blood brought my anemia to the attention of my new cardiologist. I started looking back through years of blood tests and found I'd been anemic for most of my life, but no one bothered to find that out. And even after several weeks of iron supplements, I still wasn't feeling better...
"Don't be afraid to Take Action"
I hadn't meant to get so detailed in all this, but it has all just flowed out here at the keyboard. I've shared bits and pieces of this before, but I guess someone needed to know the long story, versus the short one. Apologies to all the rest of you. I had meant to get down to the progression of finding out all the reasons, but that will be the next "installment". I hope going through all this step-by-step helps at least one of you, or maybe a loved one. My focus on sharing all this, is no matter what you're symptoms, PLEASE don't feel like it doesn't matter and for goodness sake, take action instead of sitting on your butt putting up with dangerous health issues. Don't wait for someone else to make the decisions for you, because they won't!!
OK, next time I'll share the rest of the knot being unraveled.
telling my story here:
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