Lee's Journal

Very relieved to get my results from my first echo after MVR surgery and I have 0% regurgitation, before surgery I was at 65% regurgitation. So happy and grateful!!!

I have my follow up with my cardiologist on Monday to get my echo results, a bit nervous. Seven weeks out from MVR surgery and feeling good, walking a lot and doing yoga a few times a week. I start cardio rehab next week as well. My only issue is that I feel like my hands feel shaky once in a wile, not sure why.

Tomorrow will be 6 weeks since my MVR surgery. I am feeling really good, I feel like I have a lot more energy than even just two weeks ago. I do have one question for everyone ahead of me, I feel like I need to eat more than I used to keep up my energy. After a long walk, I feel a bit shaky like my blood sugar level has dropped and I usually eat and rest a little and it gets better. But I do know my heart rate is higher than it used to be before surgery and I am guessing that maybe I am burning more calories than I used to which means I need to eat more? I am trying to get better at tracking everything, I just bought an older Apple Watch so that I can start to track my vitals better. Has anyone else noticed that they need to eat more than before surgery to keep their energy up? Do you think it has to do with heart running at a higher number than before? I am going to ask my cardiologist to start cardio rehab, I think that will give me this type of information and help me learn to track my own vitals better.

I am four weeks post-surgery today and I am feeling really good overall. I do find that if I walk two miles over the course of one day, the next day I am more tired and can only walk one mile. I am constantly working on patience with recovery. I had my first appointment with my cardiologist today and it went well. My EKG was good and my heart sounded good. He is keeping me on the Metropolol at 6mg twice a day, my BP is basically where it was before surgery, always on the low end and an Asprin 325 mg once a day for at least another month. My only surprise was that he discouraged cardio rehab because of Covid and said that he thought since I was in good shape before the surgery and I am doing well walking on my own that he did not think cardio rehab was worth the risk. I see how everyone raves about cardio rehab but I also did not want to fight him if he thought it was not smart. I guess I will just keep walking on my own for now and will ask again at my next appointment. My brother's family leaves this coming Saturday, I am so grateful for them staying with me for so long, it has been a lot of wonderful quality time together. My mom will probably come up for two weeks until I get my kids back from my ex's house. Although I do feel like I would be completely fine on my own at this point. I love seeing everyone's updates and am keeping all those who are about to go into surgery in my thoughts.

I shared this link to Thomas's post but thought I would share it on my journal as well. This is a guided visualization/relaxation that I did on Facebook Live for my students at the beginning of Covid quarantine. I am sharing it hoping it can help others :)

I feel like Dr. Jeckyl and Mr. Hyde right now. I was doing so well after surgery (aside from day 2-3), feeling so calm, relaxed, happy and grateful and sleeping through the night. And then all of a sudden I started having anxiety about falling asleep and now I am worried that the anxiety will make my healing slow down. I fee like I stayed so strong throughout this whole process and somehow all the fear and emotions are now bubbling up and throwing me off course. Before the surgery I was able to compartmentalize all the other stresses in my life and now I guess as life gets back to some sort of normalcy, I am having this sudden feeling of sadness or fear. I know I read about some other people experiencing some of this after surgery and I was afraid that would happen. But then I was doing so well, I started to think that I didn't have to worry about it and then it sneaked up on me. I am talking to friends and family about it which feels good and they are all supportive. I just hope it does not last very long :(

Today I am 3 weeks out from surgery and overall quite well. I did have another minot bout of the peripheral visual waves (can’t remember official name). I am curious if most people who had minimally invasive mitral valve repair dealt with back pain for a few weeks after surgery. I still have pain around my back ribs, it is minor but I would have thought it would have been gone by now. Just wondering if that is something that others experienced and how long it lasted?

I am curious if anyone on here deals with low blood pressure, I know that is the more unusual for those with heart issues. I have always run quite low with blood pressure and I have not been checking it since the night I got home from the hospital. That was silly, I bought the machine but I just did not think about it and kept saying I would check it later. But the last few days I started to feel a lot more tired so I finally took it this morning a few times and it was between 80/55 to 89/62. I got a bit concerned but luckily I had an appointment with my family doctor already scheduled for a check up about my low iron that was an issue before I even knew about my valve issue. My doctor, who I love, said he was surprised I was on any Metoprolol since my blood pressure is low, I am on 15 mg twice a day. He said to halve it and then ask my surgeon on my follow up on Monday. They took blood today to check my RBC count and my Iron. I had the blood transfusion in the hospital (still so glad that I had my brother bank blood for me ahead of time so that I know what was going into my body) and I felt really good for the first week after the transfusion. But now I am wondering if my RBC dropped or my iron even though I am eating high iron foods and taking iron supplements. I should get the blood results back tomorrow so will have more information. I am definitely going to be better about tracking my BP and my HR/distance during walks going forward. I tend not to be a very scheduled/detailed person, I listen to my body more than watch numbers but I think for this the numbers would be helpful. I am going to try to get better at that for the next few weeks. Just hoping it is a simple fix to bring back the energy I had right after I left the hospital. I did find out I am back to my pre-surgery weight which is nice, all that bloating is gone which is a pleasure!!!

I am having a weird thing with my vision, this is the first time I have had this. It is only in my right peripheral vision and it looks like everything in that area has a sheet of broken glass that is slightly moving over it. Has anyone ever had weird vision things? Were they temporary? Do you know what caused them? I did my longest walk ever this evening, maybe that was it. I am going to close my eyes and listen to a book tape and hope it goes away. I can see the wobble in my right periphery while I look at my phone typing this :(

My two week follow up with my surgeon is next Monday, I am curious, what does the follow up usually entail aside from looking at sutures? Do they do any type of echo at that appointment?

Feeling very grateful today, my list of gratitude is so long, but the timing for this with my family being able to be here, the repair, my kids staying so strong through it, the hospital staff being so supportive, my recovery going well, this site with the knowledge and support I have gotten, I am just in a very peaceful place right now...I hope I can keep feeling like this.

When I wake up each morning, I feel like I am back at Day 3 as far as my lung tightness and sore back. Is it common to feel like you back tracked overnight? It usually is much better by late afternoon. I am wondering if it would be better if I sleep sitting up more. Well time for my morning nap, lol.

I can add myself to the list of those who did too much on my second day home 😳. I went for a short walk and then went to go upstairs to go lie down and I got lightheaded at the top of the stairs. It scared me and made me realize I can’t use the stairs unless I have been resting for a while downstairs before I attempt them. I was also trying to do deep breathing without the gadget and I think I strained my neck in the back right. I got a bit worried today because I couldn’t fall asleep last night my body was twitching some and I had this tingling in the back right side of my head. I went to eat something and then I was able to fall asleep. But this morning my neck was still sore and I did not feel as strong as I had on my last day in the hospital. I am sure it is that I just overdid it and strained my neck some but my mind did spiral a bit, I started wondering if I had a very minor stroke and that was the tingling feeling in my head. My right hand did not seem as strong but probably just the stitches healing more. Anyway, I am definitely going to take it easy. I have learned my lesson quickly!!!

Thanks for the positive notes 🙏🏻. I am waiting for them to remove my dressing so I can take my first shower, so excited. I slept a lot last night and I can tell that my chest feels tighter this morning, think too much sleep in a row must let your lungs revert back some. If all goes well this afternoon, I think I will get out of the hospital today. I was just telling my brother how crazy it is that I can fall back asleep right after they come prick my finger and check BP in the middle of the night. It almost becomes normalized after a few days but will be nice not to have that at home. I am surprised at how much water weight I still have, my feet and legs are still a bit swollen, I am 15 lbs heavier than when I came in, lol. And it is mostly water because I have not had a huge appetite aside from one maybe two meals a day. But overall I am feeling very optimistic, only taking Tylenol about 3 times every 24 hours. I can’t wait to see my kids, SIL and nieces at home, they have really done well while my brother and I have been down in Ft. Lauderdale. So that is my most recent recap, I am going to start documenting my BP and walking, have not really done that, let them track all that till now. One funny thing, I was brushing my teeth last night and the guy who monitors my portable EKG machine came running in, turns out the movement of brushing your teeth makes the machine freak out a bit, he looked so worried, I felt bad. Signing off for now, thanks again to everyone for all their support and all the knowledge I gained of what to expect before I arrived, made a huge difference!!!

Hi everyone, I am out of the ICU, yay! My MVR surgery on the 22nd was a success and they were able to repair, I am so relieved. They were not sure if it might need to be replaced. The first three days in ICU were a bit of a blur for me. The afternoon and night after the surgery I was pretty put of it. The next morning I was able to be moved to the chair but my blood pressure was low, it always runs low but they think it was the morphine and Percuset that was making it drop more. So they moved me to Toradol which helped with the pain but not like the others. They had me on meds to raise my blood pressure and could not remove A line until I was off them so I did have one night of intense pain, I was determined to get off the blood pressure meds and it worked. Day 2-3 were very painful, my back and neck muscles were so sore and the chest tubes were hitting something in my chest periodically, it was all I could take to keep my composure. Dr. Herskowitz was my surgeon, he is excellent and he said because I had minimally invasive and my ribs did not want to spread open easily, that was probably exacerbating the pain. I am also very petite so I think the chest tubes were taking up a lot of room in my smaller frame. Needless to say, I am so happy and mostly pain free now that the chest tubes, wires and A line are out. For anyone about to go through this know that by Day 3 things improve dramatically!!! Just have to remind yourself it is temporary. I got a bit scared on Day 2, without the harder pain meds I thought I would never be pain free again, it is a mind game as well as a physical process. The nurses have been amazing here at Broward Medical Center. I have only had one night nurse on my most painful night who was not at all empathetic, she was just going through the motions, called her nurse Rachett in my min, lol. But other than that, I feel like my care has been way above what I could ever have expected. So considering I have been very pleased with how I have been cared for. Right now my biggest issue is that my stomach is very bloated, I was able to go to the bathroom #2, sorry if TMI, for the first time last night. I have never had constipation and it is not enjoyable, feel like I am three months pregnant. They are giving me something to try and flush more out today. I do have one weird thing where I see a tiny little silver dot in my left peripheral vision here and there but it only lasts a few seconds, I call it my fairy light, it does not bother me. Assume it will go away eventually but I tell myself it is there as a reminder to be grateful that they were able to repair rather than replace the valve. The surgeon just visited and he said they are going to x-ray my belly to make sure there is no blockage, fingers crossed. I am blowing about 800 in the Airlife, trying to do it more now that the horrible chest tube is out. They have let my brother come visit me every day for a little bit which has been nice, hard with Covid to even get one visitor allowed. Really happy that we got that approved. I did also have to get a blood transfusion yesterday, my hemoglobin was low and not going up. My brother and I have matching blood types so he had done a direct donation for me 6 days before surgery just in case. I am so glad we did that, made me feel very comfortable knowing whose blood was going into me!!! So that is a recap of the last four days. So glad I am on the other side of all this! I should be going home in the next two days, once my stomach deflates, lol.

My surgery is this coming Tuesday, I am feeling very optimistic about the actual surgery. I feel like saying good-bye to my kids beforehand is going to be really hard, I am dreading it. We have all stayed quite strong in the last two months but I think that is going to be the worst part. My brother and his family are here now and it is so nice to have them, it has added a lot of excitement in my house which is a great distraction for all of us.

I got my CT scan results yesterday and it came back with no calcification which is good news. There was something in there about an irregular shape of something in my heart, waiting to speak to my surgeon about the report and whether he thinks that will create any issues in surgery. That set me back a bit emotionally, just felt like I could not take anymore news about things not being right with my heart. Definitely having a little bit of pity party for myself today.

My next question (seems like I come up with a new question every day, lol) is about blood transfusions. Has anyone had to have a blood transfusion after surgery? I am now worried because I have low iron, I have been on iron supplements for a few weeks and been eating iron rich foods but I am not sure how much it has gone up yet and I am guessing if I lose blood during surgery, I might need a transfusion. My brother is coming to stay with me during recovery and he is happy to donate blood for me. Is that something I can organize ahead of time with the hospital?

I spoke to a friend of a friend who had mitral valve repair surgery yesterday and it was very encouraging. She said that she has so much more energy than she did before surgery and that gave me something to look forward to! She also said a reclining chair is nice to have to sleep in the beginning. I just found a used recliner on OfferUp so I am going to get it, will sell it after the recovery. She recommended putting things that you use regularly in the house on lower shelves before you go to the hospital so that you don't have to try and reach up (she had a sternoctomy). Any other tips or things you found helpful that you had not thought of ahead of time?

Had my CT heart scan this morning and the actual procedure was pretty uneventful, faster than I had anticipated too. I did get lightheaded when the nurse put in the IV, has happened once before. But as she was putting it in, she said, "Oh sorry, I am making a big mess." I am not sure if it was because she said that or just from the bleeding but I started to see stars. They put me in a recliner and I had some orange juice and it got much better. That was much worse than the actual CT scan :).

So the hospital coordinator for the surgeon I chose just informed me that they are not on my insurance. His assistant had told me they were, not sure how that mistake happened. Anyhow, now I am probably going to go with the third surgeon I consulted with who is in Ft. Lauderdale, Dr. Herskowitz. I think all the surgeons I spoke with are top notch but this has been a much more complicated process than I had anticipated. So now my surgery date is back up in the air :(

One other question, has anyone shared information and updates about their surgery on Facebook so friends and family can follow. I have told so many friends and my family is spread out around the world and I thought using Facebook would be the easiest way to keep everyone updated. But I am not sure if that is weird or not. Thoughts?

My surgery is in 8 days and I am trying to tie up all the loose ends. I just made a Will and Advanced Directive which is something I have needed to do for a while but this gave me the push to get it done. I am not worried about dying, I believe the surgery will go well but actually sitting down to get that done was more emotionally draining than I had anticipated. So glad it is done!

I had two consults with heart surgeons in South Florida who both said they could do repair/replacement with the minimally invasive method. Now the surgeon who is well recommended in Orlando has said he wants to do the full thoractomy. I am now on the fence of which DR/approach to go with. I really do NOT want the thoractomy but I do want the best results possible. The local hospital for the full thoractomy surgeon is 1 mile from my house and I have heard wonderful things about him as a surgeon but it is not my preferred approach. I feel like I am on a rollercoaster with emotions for all these huge decisions. If replacement, I have chosen the Tissue valve because I don't want to be on Coumedin. Since I am young, I assume if I get the replacement, I will have the valve in valve replacement down the road once this one wears out. Anyone have different surgeons recommend different approaches? Anyone had the side cut minimally invasive approach and have issues afterwards?

I have my consult with Dr. Accola today, I am very hopeful that it goes well and I can set a date for my surgery. I feel so much more at risk with Covid now that I know I have this mitral valve issue and I feel like the sooner I get the surgery, the better off I am. He will be the third surgeon I have a consult with, the other two were in South Florida and Accola is here in Orlando where I live so he is my first choice. Fingers crossed he can get me on the calendar in the next two weeks!!!