Dianne's Heart Valve Journal

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.