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Leaking Heart- May 20, 2009

August 26, 2009

Since having those stents put in two weeks ago, I’ve been in a sort of bubble. I wrote of feeling so happy, so grateful. Since the bursting of that bubble a few days ago, I’ve thought back wondering how I made that bubble and trying to bring it back.

I never felt good after the bypass in February. I spent a great deal of time and energy trying to discern if what I was experiencing was normal, wimpish, or bad news. When I flunked that stess/echo two weeks ago, I felt a little validated, almost relieved.

Then I went straight to the adjoining local hospital. The cardiologist felt it was fine to do the angio there, not anticipating the need to put in a stent (which couldn’t be done there). It’d only been eleven weeks after all. I hadn’t even missed a dose of Plavix, the wonder drug.

Everyone knows how fast things move when you are first admitted. As soon as one person finishes with you, another comes in. The same thing happens with family. The visits and calls begin and everyone is so dang cheerful. This is nothing of course, like all those symptoms in January were nothing!

A crafty tear or two slipped out now and then as a fearful thought had room to be thought in the chaos taking place in my mind. I had jokingly told Lisa that if it was ever needed, I’d have another bypass, as long as they quaranteed me better drugs in writing… a morphine drip for at least eight weeks.

More tears as I went into the cath lab. They tried the right femoral. No luck. Then the left. No go there either. Finally, they got in the right brachial artery. This little hospital is only two years old, only been doing caths for two months. The cath scrub tech was great. The circulating nurse, that’s the one who gives the sedation, was clearly new. She seemed to be constantly running here and there looking for this tool or that. I had to ask again and again for more sedation when the panic was overwhelming. Clearly things weren’t going well.

Finally, they stopped. My cardiologist came and stood by my face and told me that two of the three grafts were blocked, one 100%, the other 95%. There were also two new blockages. But I wasn’t a candidate for another bypass. My vessels were too small. Very small. They would transfer me to Crawford Long in the morning, give me the night to rest. He’d do another cath tomorrow and try to put in stents. It was very dangerous. I could likely have a heart attack. I would surely, immenently have one without it he said. He said he was sorry. Nurses held my hands. Heads turned downward and eyes fell to the floor.

As I moved from the cath table to the stretcher, I began to cry. That large man, the cath scrub tech, started to cry as well. He leaned across the cath table and took my hand. He said he would never forget me. He told me that three times.
Once in the recovery area, I pulled myself together, anticipating Lisa and my daughters. I smiled. I didn’t stop smiling for ten days. Even when the tears snuck out, they ran down my smiling face. My family had been told. They smiled too. They fell apart in hidden places, behind dumpsters and in stairwells.

The next day, I went by ambulance to Crawford, where I’d had the bypass. They took me straight to the cath lab area. About an hour was spent restarting my IV (veins aren’t any larger), then lots of smiles and laughter. I cried again, I think we all did as I went into the lab. They walked beside me as far as they could.

The doctor had told them it would take about an hour and a half. It took four hours. No one said a word to them. They begged any staff who walked by to check and see if I was at least still breathing.

The cath went easier for me. The circulating nurse introduced herself as “your IV bartender.” She was too. While I never felt sedated and stayed awake, I felt much calmer. He was able to put three stents in one of the blocked grafts and open the other with the balloon. Another blockage he couldn’t get to from the left brachial artery and still another blocked artery was too small to access with the existing equipment and also too small for existing stents.

But I was alive. I had lived through this thing he said I might likely die during. Again we all smiled as we cried.

Later, some “fellow” came to my room to remove the sheath. There was already this big drama about my arm, a vascular surgeon called in, surgery on my arm anticipated during the night…Anyway, this stranger came in and demanded that everyone leave the room. Not a good idea to say to a family who is still just realizing I’m not dead. But they reluctantly did leave, however Lisa went straight to find my nurse and find out who this guy was. The nurse came to check things out and assured Lisa and the girls that he was okay and needed the quiet as he’d be applying pressure for a while (though the nurse the day before had done the same with family present).

I tried to chit chat with the guy, but he answered any questions with monosyllables. He finally asked me if I was having any chest pain since the cath. I told him, as I had the nurses, that my chest felt sore when I took a deep breath. He told me that was psychological. I’m still having that psychological pain two weeks later, by the way.

Through the night, Lisa and I smiled and held each other (once the arm board was finally removed about 1AM. But the next morning, when we learned that this “fellow” would be the one to discharge me, Lisa hit the roof. No way was this guy coming back in the room and then she demanded to meet with him face to face. The charge nurse arranged a meeting and when he denied throwing them out of the room and then denied saying my pain was psychological, she grabbed him by the collar. The nurse touched her arm and she composed herself and by the time the meeting was over, the fellow had tears in his eyes. The nurse later explained to Lisa that she thought his behavior was primarily cultural, and that he probably had not meant to come off as cruel, and she was glad Lisa had insisted on the meeting because if more folks did, maybe he would get it that his actions are harmful. Lisa did admit to both of them that her reaction was probably exaggerated due to our raw emotions. My hero, always.

Anyway, before I left the hospital, they drew 13 tubes of blood to test for some mutant genes and such, hoping to find a reason why this disease is so aggressive in me. We’ve joked about that too. Still smiling.

I am grateful I didn’t have another bypass and don’t have that to recover from. Some of the symptoms I’ve been having since January that the bypass did not relieve, are now gone. I feel better than I have in months. Other than a few bruises and a little soreness, the recovery from the caths has been easy, relatively speaking of course. My meds have been changed and that seems to agree with me more. I was so happy to still be here. I still am. But the bubble has burst.

I can walk about 50 feet before my legs ache, hips hurt. At about 100 feet, knees buckle. Any incline and my chest hurts. There are 18 steps leading to my front door. I have to immediately lie down after climbing them. Before this last episode, I’d asked the cardio about addressing the blocked Illiac arteries and he’d said that wasn’t life threatening and he wouldn’t even consider it anytime soon. I’m guessing that’s even less likely now. So, is this as good as it gets? And if all that blockage happened in eleven weeks, how long before…

I wonder what folks experience who receive a cancer diagnosis. Do they allow themselves to step out of the bubble of possibility and look at their mortality? At what point do they stop living in a bubble. Do they go in and out of that smiling place of potential happy endings, sliding into despair and sadness of life missed out on. I’d had these thoughts before when I’d thought of this diagnosis as a chronic pain in the butt, affectionately referred to as my new normal.

What’s my normal now? Do I plan for a month or a year or should I not plan at all? Lisa was making plans for us to go to the Cleveland Clinic for another opinion. When I joked that I’d really rather go to the beach, she took me literally. We’re going next week. I really would rather go to the beach. Something about the waves and the sand makes me peaceful, calms my soul. I plan to eat crab legs, not salmon. I’ll take an omega 3 vacation.

I really don’t want to sound so down in the dumps. And I’m certainly not looking for advice right now. I just need a witness. I needed to share. I see the doc on Friday. I’ll find out if I have mutant genes. I’m guessing I’ll slide in and out of that bubble as I need to. I can’t seem to stay in one place about all this. That’s probably good. You’ve read all this before, as I had to write about it right after coming home. Still writing. Thanks for listening again.

I was going to try and make some sort of decision about work by today. That’s impossible. Maybe after the beach. Thanks for listening everyone. For all of you who live in the state of not knowing, I hope you polish you badge of courage and wear it proudly.

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