Today marks a week back from the hospital. I’m not sure what I expected, but I’m pretty sure this wasn’t it. So much didn’t go the way I expected. A friend said it was like taking your car in for an oil change only to discover you need a new tranny. I needed a new tranny, timing chain, rear axle and electrical system.
How could I have failed to notice that the central system of my body wasn’t working? How did I miss that? I was short of breath, true. I had been gradually limiting my activities. I stopped driving. I passed on activities that involved more than very minimal walking … skipping stuff that required I go up and down my own stairs. Gradually, I chipped away at life until my “outside appearances” were few and far between.
I was tired. Not sleepy-tired. Weary. I attributed each lifestyle change to something. Asthma. Bursitis in my hips, arthritis in my back. Blow-back from cancer a couple of years ago. And, of course, the all-time best bucket explanation for anything and everything — getting older.
When I was first informed that my EKG showed “issues,” though the doctors didn’t seem to feel I needed to know exactly what the issues were (did they know?) — when finally all the cards were laid out, I felt blindsided. I had been keeping track of my heart, getting an evaluation and EKG every year. Suddenly, from “no problem” to “big problem”? Heart problems don’t usually just pop up out of the blue. I still don’t know and probably never will if this was a case of misdiagnosis or some weird medical event that went unnoticed amidst the myriad other health crises which have punctuated my last decade and a bit.
Do I blame my doctors? To a degree. For failing to promptly and clearly inform me of what was happening and for giving me terrible, medically unsound advice. If I had followed it, I’d be dead.
What I expected
Cardiomyectomy (shaving down the overgrown muscle in the left ventricle that was stopping the flow of blood through the aortic valve, causing the mitral valve to work double-time. There was hope the mitral valve would self-repair if the aortic valve was unblocked. Surely, at most, the mitral valve would need repair, not replacement. (Ha!)
What I got
A cardiac catheterization, a totally disgusting, intrusive horrible test that requires you be awake — the absolutely last thing you want to be. Not like you get a choice.
The next day, the aforementioned cardiomyectomy, a bypass and a mitral valve replacement made from bovine tissue (thank you Bossy, wherever you may be).
Three-for-one. Woo hoo!!
But that’s not all, no-sirree. After another few days, when my heart refused to beat on its own (stubborn to the last), it was back to surgery for a pacemaker. Now everything in my world runs on batteries, including me. Sure hope those batteries keep going and going and going.
Waking up – Let the games commence!
Round one: They tried arousing me, but I woke up fighting, struggling. Apparently tried to deck the recovery nurse. I do not remember this, but I have no reason to doubt it. Under the circumstances I’m sure I wanted to deck someone. They put me back under for another 24 hours. They were protecting me and/or the nurse.
“Tough customer,” they said.
Round two: I heard Katy, my new recovery nurse calling me.
“Marilyn, wake up. You’ve had your heart surgery.”
“NO,” I said. Liar liar pants on fire. They were saying it was Friday, but I knew it was only Thursday. What’s more, I was in the middle of a word game and the letter “U” was missing. I could not wake up until I found it.
“Marilyn, you have to wake up.”
“NO I DON’T,” I said.
“Would you like to see your husband? Your friend?”
“You have to wake up. It’s time to wake up.”
Ultimately, I realized the letter “U” was a permanent loss and they were just going to keep annoying me until I stopped saying NO. So I opened my eyes. Instantly knew why I hadn’t wanted to wake up.
Question: How much pain can you be in and still live?
Answer: A lot.
Thus I reentered the world. Screaming in anger, pain, outrage and helplessness. I’m still screaming. Silently.
I’m so glad you’re back home and on the road to recovery. Special thanks go to Garry for keeping us all updated!
My dear Marilyn, I am so glad you are too tough to kill. You have gone through the wringer and the meat grinder and then been run over by a tank and you’re still here, and I am very glad of it. I wish you immediate lessening of the pain, continued healing and increased comfort, and a long life of love with your loves, writing your wisdom and wit, and being You. My very best wishes, vibes and prayers are all coming your way. Peace!
Your description is apt. I am glad to be alive. Mostly.
Marilyn, it is great to hear your words and to read your post:) I have missed you! Gary did a great job keeping us updated and informed on your condition, surgeries etc. and you are one tough cowgirl and a brave lady indeed! I am praying your weather warms up and that spring bursts forth with all the beautiful colors out your window as I know that will help heal you too:) I went through the double mastectomy and tram flap reconstruction in April…had 22 hours of surgery in two days…had a long recovery at home as the tram flap uses one of your lower tummy muscles, it was a huge surgery and long recovery. I remember both good days and bad days in the healing process but each time I looked out my window seeing the glory of spring colors everywhere, brought me a positive focus and a smile. Take your recovery slow and focus on one day at a time…this is your time and it is ok to do only what you want…get lots of rest, eat well and each day that passes will be one step closer to your health returning far better than before!
Keep on fighting Marilyn. You seem to have a good team around you. But little steps at a time. We’ll still be here tomorrow.
Hey!, I understand that “DuraCell” has some new super batteries on the market. Rumor has it they’re designed to make you live longer.., Costco’s got ’em in huge econo-packs. \\// Live long and proper.., and don’t throw away your Costco card. 🙂
Marilyn, I’m delighted to hear how well the new plumbing, hardware,and electrical systems are working. And to think you got all this extra work done for the same low, low price. And to top it off, I understand you were provided with an all-you-can-eat à la carte dining experience, delivered right to your room! Sure, there’s the pain, but you’ve got to admit, there’s no better feeling than having it subside and be replaced by the bliss of a drug-induced respite. Well, maybe there’s some better feeling than that. Overall, though, between departing this life for parts unknown and blessing us with your enlivening presence for what I hope will be many more years, you picked the right door, notwithstanding what Jay might have had in the box, and I’m sure we’re all happy for that!
And thank goodness for friends, stalwart spouses, and that hour of bliss when the drugs kick in!
Wishing you a full recovery, a warm spring and the energy to enjoy it, and a long time to keep on writing.
I followed Garry’s updates and cannot imagine what it was like to be on the receiving end of all the news and sudden changes.
I am glad you are back at home now. Hang in there!
Thinking of you, you brave, brave, determined woman.
Oh God, Marilyn I just about cried reading this. I’m so sorry this was such a horrible experience. I am, however, VERY glad you survived it all. I hope and pray I NEVER have to experience something so violating as this. You have definitely been to Hell and back. I am also very glad that you came back fighting because that means you are still here and wanting more of life and what it offers. Good or bad. I just want you to know that I’m thrilled to see you writing again, albeit I’m sure, painfully so. Remember, we have dates ahead. I look forward to them down the road. Keep healing and fighting. Kick ass lady!
Not going to be writing much until my torn right shoulder heals. Got all kinds of weird, inexplicable injuries.
My doctor reminds me that getting older is not a reason to feel sick and tired. I wonder if he will say the same things when he gets older.
I am sorry it did not go as planned, but you have been with us every day through your posts and photography. This coming week you will take us on vacation with you. I think you will have fun on the roller coaster. It is much like life, with its crazy ups and downs.
Your new batteries should make you like the energizer bunny and when the scars heal you will keep going and going and…
Take good care of yourself. And when you feel yourself again, send your gorgeous photos our way.
Due to the magical archives you will be able to see Marilyn’s photos every day.
You poor thing. I know in some respects what you went through. Going to sleep and expecting one thing and your world tipped upside down when you awake on the other side.
It is totally amazing how we convince ourselves we are okay when there were little signs along the way. For people like us, it is really hard to decipher whether it is something we should pay attention to not when it comes to symptoms.
I’m just thrilled you will get a chance to see what life can be like being a little healthier than before….that is after your body stops screaming in pain and can relax and just be again.
Welcome back among the rest of us. Take it easy and only do what feels right. Get plenty of rest and don’t be too hard on yourself.
Can’t tell you how relieved and pleased I am to see you back amongst us, Marilyn! This account made me laugh in places (trying to deck the recovery nurse; ‘tough customer’; the humour around parts of the surgery itself) and want to cry in others. Your final bit reads like a birth, a rebirth – and I love the way you have written it: giving it that primal, raw, new baby feel.
It sounds like the most horrendous experience – I thought this as I read Garry’s daily updates, but didn’t want to make a bad situation worse by saying so quite this bluntly.
I hated the thought of all the pain and distress you (and Garry) were going through.
But – thank the Gods you are up and doing again!
Tough Customer, indeed – but in the best possible sense.
Love and hugs,