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21798 DECOMPOSED ----Wednesday and Friday of this week I had to go to the doctor
   OMG, WHAT A GREAT POST TO OUR FRIEND, RIBIT! BOTH OF MY PARENTS HAD... 		kathy_s16   POPE 5   27 Jan 2019
 7:55 PM
21739 Re: Wednesday and Friday of this week I had to go to the doctor
   ...after all the testing I have a follow up appointment with the docto... 		ribit   POPE 5   27 Jan 2019
 3:04 AM

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Re: Wednesday and Friday of this week I had to go to the doctor

By: Decomposed in POPE 5
Sun, 27 Jan 19 2:32 AM
Msg. 21738 of 62138
(This msg. is a reply to 21720 by ribit)
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ribit:

Re: "I have Congestive Heart Failure."When my mother was diagnosed with Congestive Heart Failure (CHF) around the year 2000, she was already weak. The cardiologist told her that she needed to be stronger before he could safely put her onto beta blockers. He put her on some kind of a diet and exercise program that was supposed to help but did nothing else. A month later, nothing had changed. She still wasn't on the beta blockers and the cardiologist wasn't taking any further action... still telling us that she needed to be stronger before she'd be able to tolerate them.

Sooo, at this same time, news broke that a doctor at Temple University had made a breakthrough discovery about CHF, discovering that the insertion of a Left Ventricular Assist Device (LVAD) into the abdomen of CHF patients had been shown to take enough of the burden off of their hearts that the hearts had significantly healed themselves even to the point where some of the patients no longer had diseased hearts. (Prior to this time, LVADs were only being used by Heart Transplant patients to help them stay alive for a few weeks while awaiting a heart.) It was a landmark announcement that was to be further tested in programs across the nation.

I wrote to the doctor - who was one of the Temple's transplant surgeons - and told him what was going on with my mother. I included a Self Addressed Stamped Envelope and asked, fingers crossed, if he could send me information on how we might get my mother added to the program.

To my astonishment, he phoned and spent an hour talking to me. Yes, I was impressed. This doctor had just made worldwide news and was probably billing at $1,000 an hour. Here I was, not even a patient, and he was giving me that much of his time.

Because of my mother's age (76), he wasn't optimistic that she'd be accepted into the new test programs. He did tell me which west coast hospitals to contact. But ... he asked about what was being done to treat her and I told him that only diet and exercise were being prescribed until she could receive beta blockers. He asked what efforts were being made to diagnose the cause of the CHF. I told him that our cardiologist had told us that nothing should be done along those lines because it would just cause her a lot of discomfort and the treatment would be the same regardless. This is the part I'll never forget. He paused ... for ... a ... LONG ... time. It was obvious that he was shocked. Then he said something I'll never forget: "I am not your mother's doctor. I can't examine her or prescribe for her. But if I was, I would be *very* interested in trying to find the cause of the congestive heart failure prior to prescribing treatment."

Yikes. He made it clear that although the attempt might be in vain and the cause never determined, it's important to try. There IS a cause. So, ribit, make sure your doctors are looking into it. You might want to use their level of interest in this as a way of gauging their competence in treating you.

My three siblings and I accompanied my mother to her next cardiology appointment. Without identifying the Temple University doctor, I told the cardiologist what I'd been told. The man had an absolute tantrum in front of us. It was the most unprofessional thing I've ever seen. He demanded to know who this doctor was so that he could inform him of his own credentials and experience. Our family pretty much stood there shocked... then declined to give him that information. Upon leaving, we contacted Kaiser Permanente and asked for a new cardiologist... essentially firing this one who was reportedly their top Northern California cardiologist.

A few weeks later, my mother's General Practitioner suggested that she see an Endocrinologist. At that time, my mom was still untreated. I didn't go to this appointment but my sister did. She told us that the endocrinologist asked my mother a series of questions - about her voice, about sensations in her arms, etc. My sister said that it was an amazing interview because my mother began nodding and saying "Yes, yes, yes, yes, yes" to just about every question, acknowledging symptoms that she'd never mentioned to any of us before. In mere MINUTES, the endocrinologist smiled and said, "I think I know what the problem is," and she was right.

The problem was that my mom had a hyperactive thyroid. This isn't as common as a hypoactive thyroid, and it's harder to diagnose. The endocrinologist had my mother attached to a machine that she had to wear for about 48 hours straight. Hyperactive Thyroid CANNOT be diagnosed with a simple blood test . . . although I've had numerous doctors over the years tell me that they've tested me for it with a blood test. They're wrong! The thyroid may go hyperactive sporadically, doing damage only during certain stretches of the day (or night). Therefore, a single blood test is not going to detect it. It's a FAR more dangerous disease than hypoactive thyroid which pretty much just leads to exhaustion and being cold all the time. Hyperactive thyroid burns out all of the muscles in the body... heart included... and kills you. The treatment was incredibly easy: My mother was given radioactive iodide injections (or was it pills? I've forgotten) which was absorbed by the thyroid gland, killing it. From that point on, she had to take Synthroid (Synthetic thyroid) pills. Problem solved.

Well, not quite. The hyperactive thyroid had already damaged her heart badly and although she lived for years more, she eventually died from CHF.

There are a few things I hope you'll take from this post. (1) The cause matters. Try hard to have the cause identified. If my mother's hyperactive thyroid hadn't been diagnosed, her CHF would have continued worsening at a rapid rate and she wouldn't have lived long. (2) Not all doctors care about you. My mom's cardiologist was clearly more interested in treating her CHEAPLY than in treating her well. (3) It's vital to have one or more advocates attending your appointments from now on. They may ask questions and look into issues that you would not. It's too easy for the patient to just say "Yes doctor, yes doctor." I feel pretty good about having added several years to my mom's life by looking beyond what the doctor was telling us and getting another opinion. (4) I have no idea what became of the LVAD discovery in the year 2000, but you should investigate it and see if it might help you. Here's one article on the subject to get you started: https://www.nejm.org/doi/full/10.1056/NEJMoa012175

You may eventually need a new heart, ribit. If so, you'll only be a candidate if you aren't drinking, aren't smoking, and aren't overweight. I'm sure your doctor will tell you to lose weight. I suggest you take the advice seriously, perhaps even considering something drastic like going vegan. You'll hate the idea. I would. But veganism has made some miraculous differences in the lives of heart disease and diabetes patients.

I wish you the very best. Please keep us informed about what your doctors are telling you and how you're doing.


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