Dianne's Heart Valve Journal

Our puppy Jimmy, 8 month old Belgian Tervuren. Has been with a friend for the past month, he's home now that I'm better!

Post op checkup with my surgeon, Dr. Accola. Everything looks fine and I've been released to cardiology. Sternum precautions have been relaxed, meaning I don't have to keep my elbows glued to my torso, can reach over my head, and reach down. I can lift up to 10 lbs. All of this of course as it feels OK. I'm allowed to drive around the neighborhood when I feel like it, and can start driving week 5 - 6. I'm still woozy headed enough I don't want to drive, but knowing that I can in case of emergency, and knowing that I'm more able to fend for myself means my husband can go back to working in his office. And our puppy can come home!

I'm finally starting to sleep a bit better at night, I can sleep for 3 to 4 hours before waking up. I can sleep on my side a bit if I prop on a pillow. I still need my afternoon nap.

Most of my torso aches and pains are gone. Lingering is my right shoulder, radiating down my arm to a crazy shooting nerve pain on the anterior of my wrist. Still treating with muscle relaxers and heat, but now that I can reach, I can start some stretching exercises; otherwise I'll have to followup with my PCP. My sternum area is still tender, but it doesn't really hurt, hurt.

I have home health care, PT and OT twice a week. I'm not sure how I got so lucky, but I'm really glad they come. They help push me to new goals, and PT has twice told me stop with the heroics and take the pain pill.

Last week I reached a daily cumulative 1.5 miles walking. The goal for the end of this week is a daily cumulative 2.5 miles walking. Every little bit helps my endurance, so I tell myself as I head down the driveway to walk again. Oh, and not allowed to use my walking sticks until week 7.

~dianne

3 weeks post op. Sternum precautions have been relaxed, released from surgeon.

Those shoes This recovery stuff is both harder and easier. Two weeks post op. Sternum precautions are hard. Sleeping is harder. Can’t tie shoelaces, buy new shoes.

I woke up in the wee hours of the AM (to get up and go pee of course) and realized I was sleeping flat on my back. Not elevated. Breathing just fine. No coughing. No chest pain. I recalled I had this same middle of the night experience before I left the hospital. Amazing how fast the heart heals. Now, I just needed to figure out how to protect my sternum and get out of bed.

This week we've been purchasing unexpected medical supplies ...... from Amazon. I've now got a Prime Trial and looking forward to being awake long enough to watch some video's. Yes, I did need that OX monitor, and yes that +- 10 error in systolic is important and that grey ashen look on the face of the home health OT watching my get out of bed method was almost priceless. That earned me my Prime Trial! "You will get this and this and have it here by Friday. Amazon has them."

Tomorrow is my first post discharge appointment with my cardiologist.

Yesterday was one week post OHS. It wasn't a great day, starring bleary eyed at the blood pressure monitor results set the tone for the day. Thankfully, today is a better day. Generally every day is better.

4:15AM our suburban neighborhood was quiet. I walked slowly down our driveway staring up to the heavens through the oak trees. The Snow Moon wasn’t to be seen through the city lights and haze, but I’m sure she looked down on us and shared my thoughts. On my way for mitral valve repair by way of open heart surgery, I knew my chances for success were extremely high. I fretted over why I would certainly be coming home, yet my friend never left the same hospital and surgeon. “Survivor’s Guilt”, I named it to myself. In our small volunteer organization, one lady always stood out from the crowd for her joie-de-vivre. She just radiated happiness with life and each bit of nature she found. She was always there, always happy, smiling and ever friendly and helpful. Through scheduling changes, we discovered we shared the same surgeon. We exchange notes, wished each other success and planned to team up for cardiac rehab.
And then she left us.
I admired her greatly, but we were never close friends. Nevertheless, she was always kind, friendly and a force of nature when our paths might cross. My soul cried for her family, and my broken heart weeped again. I wondered to myself why she chose this risk, but there was really no reason to ask: Always look upward and onward. “And one day she discovered that she was fierce, and strong, and full of fire, and that not even she could hold herself back because her passion burned brighter than her fears.”
― Mark Anthony, The Beautiful Truth

I'm on the flip side now doing relatively well, each day is an improvement. I keep looking up, and know that is just what my friend would expect of us all.

Homeward bound. Successful mitral valve repair at Florida Hospital South. I will write more when I am able. Can’t say enough about Dr Kevin Accola and his team. The best, so grateful they are in my area.

Here we go!

My husband and I met my surgeon today, Dr Kevin Accola and his team. Really nice people. Took a lot of time and explained things really well. I needed my husband to understand what was happening, and he feels good about the day. Surgery is scheduled for Feb 19. We are both still amazed at how fast we went from, gee you have a heart murmur to, gee you need urgent open heart surgery. I'm amazed how fast my condition has deteriorated. Dr Accola said that once the valve starts seriously leaking it is a snowball effect, the leak just keeps growing. Oh, and having the words "congestive heart failure" used in relationship to myself was a bit scary.

My cardiologist, Dr. Patel, encouraged me to wait for Dr. Accola, and I agree. Dr. Accola says he is 97% positive he can repair my prolapsed mitral valve, which means a faster recovery and a much better long term answer. It will be a traditional split the breastbone, but the incision will actually be fairly small. I'm perfectly fine giving the surgeon all the room he needs to see and make good choices for my long term. And this incision will be going right through another scar on my chest compliments of the high energy MVA that bungled up my legs. I think once everything heals up I may get some puppy paw print tattoo going up my scar line.

The subject of my use of forearm crutches did come up. They don't want me using my walking sticks post op because that will put too much stress on a healing breastbone. Which makes perfectly logical sense once they mentioned it. They would prefer I use walkers over a wheelchair, because being upright and mobile will improve the time to recovery and the bone healing. They are expecting me to be inpatient an extra day or two because of my mobility challenges and the staircase at home.

One of the first questions the PA asked me was "how long have you been monitored?". Huh? He and the surgeon both thought I had been monitored for some time, rather than "oh, I just saw a cardiologist for the very first time on Jan 8". They told me that roughly 1/3 of women have mitral valve prolapse, and of course not all become mitral regurgitation. But still, that is a lot! My new thing is going to be, skip a year of mammogram and have an echo-cardiogram instead.

So I have a week, and orders to take it super easy.

My husband says he is ready for the rollercoaster to stop! Had the cardiac cath yesterday and my arteries are fine! Surgeon was not available so I got sent home late last night. We are punted to scheduling.

Somebody found some room for my cath on Thursday, so I'm back on track for Friday surgery. My head is screaming at me "it's getting real!"

Well, they couldn't get me in on Thursday for a cath, so it is Friday afternoon. They've told me to bring a kit bag but I'm doubtful they would be doing non-emergency surgery on the weekend.

I saw my cardiologist this afternoon and got the rest of the story from the TEE I had last Thursday. I have mitral valve prolapse. He says I was born with it, and if I had ever had an echocardiogram done before this month it probably would have been detected. Apparently, age and circumstances I now have one "leaf" of my mitral valve that isn't working. I have symptoms; I have a bad cough, and I have trouble breathing; with palpitations when I cough a lot. Apparently, I don't yet have any heart damage, and all my other tests are good. So they want to do a mitral valve repair or replace as soon as possible; before I have any damage. Cath is being scheduled for this Thursday. It is the intention of my cardiologist and the surgeon to admit me directly from the cath for surgery on Friday.

Yikes! So much for planning. I don't think I will have any time to do those precooked and frozen meals. In fact, I don't think I will have much time to do anything except pack my kit bag and finish year end taxes for my boss.

I did a bit of poking around this weekend, and thanks to several people who wrote some nice journals, I've got a few nice lists going. I am curious, does anybody have any tips for gimps? I was in a horrendous high speed head on roll over collision 13 years ago and I have permanent damage. Specifically, my right leg from the mid femur down has neuro-muscular damage. I do a lot of daily weight bearing using my arms, for example; I use my arms to get up from most chairs; including our only recliner. I have already figured out I would be using a walker immediately post op, but what am I not thinking about around the house when I get home and what might I do to prepare? I do own a wheelchair, but I haven't needed it in several years and if I think it might be needed I need to have it serviced. Thanks everybody for your tips.

All in all, I keep reminding myself I'm very fortunate, and although I feel like panicking, I don't have time for that!

Jan 17, 2019 - had an 11AM TEE Transesophageal echocardiography at Florida Hospital Altamonte. Care team and Dr Patel were fabulous. No issues. Dr Patel called my husband and told him I needed open heart surgery. Will see him Monday to discuss options and start the process.