On My Heart (A Series)… &%*^$!!

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The lovely leadplant grows wild here and she’s in full bloom today.

Trigger warning: Whining ahead.

May 25 marked eight months since my heart valve replacement surgery. At my six month checkup in March, I told my doctor I felt like my recovery had slowed down. I was having a harder time getting up the Slope to my garden. I have fallen asleep at the wheel a few times, and had to keep slapping my face to avoid a terrible accident. He said it takes time to get back to normal, and ordered an echocardiogram, which took two months to get in.

As I waited for the test, I started coughing and feeling even more tired during the day. I was diagnosed by my PCP as having walking pneumonia and put on antibiotics. But neither the cough nor the fatigue went away. I was waking up choking multiple times during the night, and my ankles were swelling.

I had the echo on May 24. The radiology tech said “I guess you are here for this leaky mitral valve?” I wasn’t surprised, I knew something was wrong. I was gutted. The mitral valve had been slated for replacement in September with my aortic valve, but the surgeon made the decision not to because, in his words, “it started working again.”

The tech said the leak was severe. I left the office with instructions to wait for more instructions. I drove back to work with huge gasping sobs. The thought of going through another surgery was scary, but information gleaned from an afternoon of surfing medical websites on right-sided heart failure was scarier. The nurse called later and scheduled me for a transesophageal echocardiogram (TEE). I would have to be sedated and they would put an ultrasound down my throat to get a different but clearer picture of what is going on. “Yes,” the nurse said in answer to my question, “another valve surgery is likely in your future.”

The TEE was Friday, May 31. After the procedure, while I was in recovery, my doctor told Charles said the mitral valve was regurgitating “moderately” so we would just take a wait and see approach and monitor closely. Charles, my hero, pressed the doctor further and told him I was coughing, choking and falling asleep all the time. Doctor said he would schedule an angiogram for a closer look.

After I woke up from the TEE, I insisted on speaking to him myself. He was paged and met me in the waiting room. “How are you doing?” he said.

“Well, not so great.” I said.

He asked what was going on. Uhm… hello! I asked “How can May 24 regurgitation be severe, and today it’s no big deal.” He said that’s why we do the second test, to make sure. I wanted to know, if you aren’t going to take the results of the first test, why not just start at the second one?

He said, “That’s just want we do, they can’t do the second one without the first one to justify it.”

Our medical system is so screwed up. He reiterated that my valve was only moderately leaking. There are stages, mild, moderate and severe. Mine is moderate.

“What about my symptoms?” I asked. He asked me a long list of questions that he should have already known. Am I a smoker? Do I work around chemicals? Been involved in a housefire? Then he asked about my medicines. He should know this, he prescribed them. He suggested I break the Entresto in half and take a half twice a day. I already do that. What I heard him say next is to just stop taking it altogether. Charles thinks he said to take half once-a-day. I’ll confirm Monday, but my concern is he won’t remember what he told me standing there in the waiting room because he didn’t write anything down. I miss the good old days when doctors knew their patients and took a real interest in them as people. When I was a kid, we would sometimes run into our family doctor and he would always recognize us and speak to us like he knew us. Because he did. Now, we are just numbers. I rely more heavily on my nurses than my doctors. Nurses see people.

My doctor said an angiogram would give them a better picture of what is going on. He also wants me to see a pulmonologist to see if my symptoms are lung related. I get to wear a heart monitor for a month. “But,” he said, “from what I’m seeing surgery is not appropriate. I wouldn’t do open heart on you again, anyway. It is too risky.”

I asked him why the surgeon had not just replaced the mitral valve while he was in there. He said that was the surgeon’s decision to make. “But I’m the patient,” I argued. “I would have preferred he fix it while he was there already.” He actually chuckled at me – a risky move for sure.

“It would have been malpractice,” he said. “If the AMA found out he replaced a working heart valve, he would be in big trouble.” I told him that my valve wasn’t working if it was leaking. He said, “Well, we can’t replace one that is at 50% because it may never get worse. We have guidelines we can’t just replace a perfectly good valve because the patient wants it.” Since when is 50% perfectly good.

Question: Ok, then, how in the heck do Meg Ryan’s plastic surgeon and other celebrity doctors get away with replacing perfectly good faces because the patient wants it?

Had I known I would have been in this position eight months after that horrendous experience, I probably would not have done it. I had such high expectations for this spring and summer and it takes me three times as long to do anything. I wanted to expand the vegetable garden but I can barely manage the one I have. I wanted closure after the procedure – something like “Oh, we found the problem, easy fix.” I didn’t get it. I got an appointment with a pulmonologist and an angiogram. No answers, just more questions.

The rest of the day was spent doing the following: getting mad, being sad, crying, yelling, pouting, answering every “how are you?” with “Fine, I’m apparently fine. Couldn’t be ^*% better.”

Charles suggested I not take out my frustrations on him, because he is in my corner and none of this is his fault. I wasn’t taking my frustrations out on him, I was taking my frustrations out in his presence. I could see the difference; him not so much. I told him he did not sign up for this and he responded that it didn’t change the way he felt about me. He told me we had to make the best of things. He said, he could get a wheelchair and push me up to the garden, or I could get a golf cart. Absolutely nothing about that is appealing. I like to do things myself. I don’t want to be accommodated. That is not the life I envisioned.

So, after a three hour nap put me in a slightly better mood, Charles and I did a little planning for our future. This heart thing is not something I can control any more than I can the world. We are in control of so little in our lives; which is is a stupid plan altogether. I don’t want a lot, but is being in control of the body I feed, clothe, and wash every day too much to ask? I don’t think so. But, until we figure out what is going on, I need to concentrate on the things I can do. Charles’ suggested I stop being a stubborn ass about asking for help, do what I can do, and move forward toward the dreams that we both have for Sugarberry Slope.

For two days, I’ve been off the Entresto after the doctor suggested it might be keeping my blood pressure too low. Oddly enough, I feel pretty good today and have a bit more energy. Was it the long ugly cry releasing negative energy, or could this little pill have been the culprit all along? I can’t even hope it is the whole story – but I will take the improvement. I have work to do. The Slope is producing new wildflowers every day and I’m excited to catalog them for the collection of seeds. Those weeds aren’t going to pull themselves, right?

A speaker in a Zoom conference I attended recently said “You have to live each day as if it were the one for which you want to be remembered.” Really? That sounds like a lot of work honestly and a little too much perfectionism for me. Who even wants to be around that person every day?

I like my philosophy better. If life throws an inside curve, I need to adjust my swing. I can’t give up now, right? This is just the seventh inning stretch.

04 comments on “On My Heart (A Series)… &%*^$!!

  • Kevin carrel , Direct link to comment

    Diane, was in LinkdN and saw your 2 year work anniversary. Wished you congrats. Even more importantly wishing you warm hugs and thoughts for you, Charles and family. Totally forgot about your blog. Here I am reading your heart series. Have so much respect for you and, with that, will daily push warm thoughts and a prayer for you, Charles, family and your healthcare staff. Totally agree with your thoughts on the state of healthcare. At 66, finding out my # of doctors and pull count is increasing AND quickly learning I am my only advocate. Miss you at True Sky because you are a rock star and want nothing but the best for you!

  • Mitzi , Direct link to comment

    Buggers Diane. I feel the same way. We aren’t in charge of our own health care at all. Insurance companies are. We can only advocate for ourselves to the 100th degree.

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