Marilyn's Journal

It’s been 8 years since I had my aortic valve replaced with the Trifecta valve.  I was shocked to find out it’s failing and I have severe stenosis right now.  I finished chemo in March and radiation a month ago and this Tuesday I will be getting a TAVR procedure.  I am really out of breathe, especially when I’m walking.  I’m wondering how anyone else has done with the Trifecta and how long it lasted.  Also, how they did with a valve in valve procedure.  

It’s been two years today that I had my aortic valve replaced. I’ve been doing great. After a year of going to rehab I started having pain in my hip. It got so bad that I had to quit exercising. After getting x rays I got an injection and had physical therapy. Neither helped so it looks like I’ll be getting a hip replacement June 15. I feel bad that I have not been very active for the last year. I sure hope it’s not affecting my heart’s health. If anyone had any other surgeries after having a valve replaced I’d like to hear how it went. Also my family doctor wants me to take calcium supplements for my bones. I asked my cardiologist about it and she said she’s not a fan of taking calcium. I don’t want any calcium forming on my valve. Just wondered if anyone is taking calcium or has any thoughts on this subject. Anyway wishing all those heading into surgery the best of luck!!

It was 1 year ago today that I had my aortic valve replaced at Cleveland Clinic. When I think back and remember how bad I felt before my surgery and how great I'm feeling now I am truly amazed! Even though there were ups and downs during recovery, it's the end result that really matters. I can do so much more now than I could with my bad valve. It's wonderful to be able to walk and breathe and have energy and feel normal again! I'm still doing cardiac rehab and enjoying it. I'm so thankful for the doctors and everyone that was there for me on this journey. And I'm grateful for this web site that I got so much information from before my surgery! It helped tremendously! I wish everyone who is facing surgery and who is in recovery the best of luck! It will take some time but it is so worth it!!

Just an update on my progress. For the first two months I was suffering with a large pleural effusion. After having it drained and then some medication, it was finally gone. I could not believe how much better I felt! I could finally breathe, had energy and no more pain! I started rehab and only have a few more weeks to go. I have been doing a lot of walking and have been trying to increase my stamina because I start back to work tomorrow. Before my surgery I could only walk two houses away from mine and had to stop because my chest was uncomfortable and I couldn't breathe. Now I am so amazed at how good I feel, how far I can walk and how much I can do. I have not felt this good in a long time and I realize now what bad shape I was in before my surgery. The Dr's here also said I had asthma and put me on inhalers, which did nothing for me but give me thrush. Now I'm thinking my breathing problems were stemming from my .67 valve. I am so thankful everyday to God, my doctors and the people on this site. Reading here gave me the courage to go through this and to believe that I too, will have a good outcome. I pray each week for everyone that has surgery coming up and for those in recovery. It is wonderful to be on the other side!!

Well I couldn't handle how I was feeling with the fluid around my lung and ended up going into the ER on June 3 and had 1.4 liters (about 3lbs) of fluid drained from my lung. I could not have waited for a three week appointment. It really hurt to breathe for a few days after so I couldn't even start rehab. Finally the pain subsided some and I walked and did the spirometer and started rehab. Went for another X-ray and they said fluid is coming back. Dr gave me LASIX and a steroid this time. I go back for a recheck next Monday and hopefully it's helping. Today I went to urgent care because my arm is swollen and painful and red near the elbow. Got a prescription for antibiotics. They think it might be cellulitis. I can't imagine where this is coming from. And at times I feel that I can feel my heart. Is this normal? Is it because it's healing? I keep wondering if I will ever be the person I was before surgery or is that person gone for good? Maybe I'm expecting too much too soon.

Well I had some fluid in the lining of my lungs after surgery. On Memorial Day I ended up in ER with chills, fever, cough and pain in my back. They chalked it up to a virus. The next day I had my first echo after the surgery. It showed my heart was good but the fluid increased in my left lung. My cardiologist said I needed to see a pulmonologist and have it drained. Can anyone tell me what that is like? How painful and is it done quickly? Also, my left side hurts and different places in my back. It's very uncomfortable and I'm out of breath. I should be starting my rehab but it doesn't feel good to walk. My appointment is not for almost three weeks. Trying to get it moved up sooner.

Had my appointment today with my cardiologist up at Cleveland Clinic. It went ok. I told her I was having a lot of numbness and burning across my whole chest, from my incision on the right side (mini thoracotomy) across the sternum and over to the left. She said it's most likely nerve pain and gave me a prescription for Lidocaine patches. She said it was good I had Dr. Douglas Johnston as my surgeon because I have a small heart and besides the aortic valve replacement he also did a root enlargement. Also, doing it through a 2-3 inch incision in the ribs is his speciality. Last year when I saw a cardiologist where I live he said I would have to be cut through the sternum 8 inches. He said minimally invasive couldn't be done. So glad I chose Cleveland Clinic! I did run in to Dr. Johnston while I was there and got to thank him and give him a hug! Going back next week for an echo to check things out. Went into ER two days ago for elavated heart rate,blood pressure and dizziness. Once they gave me fluids my HR started to come down. I'm thankful I've only had some minor setbacks so far. And I'm so thankful for Dr. Johnston and his knowledge and expertise in giving me a second chance!

How soon after surgery was anyone around a lot of people? It's been 3 1/2 weeks since my surgery. I'm concerned because my mom passed away three days ago and I have calling hours and funeral coming up. I'm trying so hard to stay calm and not get my heart worked up! I am handling all the arrangements and am physically and emotionally exhausted so far. Have been too tired to do my walking. This is really hard. Plus, I just don't want to get sick from anyone. Hope I can handle these next two days.

Well it's been two weeks yesterday since my surgery. I have to say my first week home was hard. Sleeping was hard, breathing was hard and just feeling so so weak. I went back to Cleveland for post op check-up this week and they said it is so normal to feel like this. They also told me that at about 3 months I should be about 50% back to my old self. My bloodwork and EKG came back fine. I'm glad the transfusion helped. Chest X-Ray showed some fluid in lining of the lungs. They gave me another prescription for that. Maybe that's why I'm having the breathing issue. Tuesday night I couldn't fall asleep til 5:00am. I felt horrible the whole next day. Last night I slept so well and this morning I feel a definite improvement. Feel like I can even breathe deeper and not so weak. I'm afraid to get my hopes up having this good day. I know there are ups and downs to be expected. For now, I'm enjoying this great day and hope week three brings more of the same. I am thankful that my recovery is quite normal so far. Hope that everyone else is having a smooth and uneventful recovery and prayers for everyone heading into their surgeries.

It feels so good to have this surgery behind me. I'm so relieved just to not have that anxiety hanging over me every minute of every day. I do think the waiting is the worst part. I feel like I've already come a long way just being home only two full days. Most of the time I feel pretty good but I notice even if I talk too much it wears me out. I don't really want visitors yet. I was feeling so weak, tired and out of breath before this. It was well worth going through the surgery to get my life back! I am just so grateful to the surgeon and doctors at the Cleveland Clinic. I couldn't have chosen a better place to be! And also for my daughter who stayed with me 24/7 in my room taking care of me! I'm so glad Adam Pick decided to create this site to give people the opportunity to communicate with and encourage each other. I have found so much valuable information here. Thinking every day about all those still facing surgery and everyone going through their recovery. 💜

It's been one week since my surgery. I haven't posted in a few days. I just couldn't because of feeling bad. Transfusion night took so much out of me. They struggled to find a vein they could use. Called in several people it just wouldn't go in. Finally all done at 4:00 am. I basically slept the whole next day. The next day they were waiting for my labs to level out, because my platelets were down to 34,000. Red blood cells went up so that was good. I could NOT STAND the smells in the room. The bp cuff, equipment, clothing, even what they washed me with! The smells were making me sick! Anyone else feel like this? Day after that though the nausea seemed to diminish. I started to eat some. Once the labs looked better Dr. said I could go home or stay another day. I said I wanna go!! Didn't get home till 8:30pm last nite. The hour or so drive wore me out, but feels wonderful to be back where I belong!! So glad this is behind me now!!! Best wishes to my heart family 💜

Not having a good day today. Still nauseated so can't eat hardly at all now. hemoglobin is low so they are setting up a transfusion. Had no energy and only took two walks this morning. Feel like I took a step backwards. Did anyone have one and it really helped? I need to feel positive!

Surgery went well. The night in Icu was rough. Had a lot of back pain even tho the incision is on the side. Ended up with cow valve. Was so glad the breathing tube was out before I woke up!! Have been very nauseated. Felt so good to sleep yesterday.

Had a good day today meeting with the doctors. I'm either getting a bovine valve or a Trifecta valve, which is a combination pig and cow valve. He will decide when he gets in. And because there were no blockages and only has to replace the aortic valve he will be doing a mini procedure between the ribs! I'm feeling very positive today especially after talking to everyone there. I'm actually surprised I'm not that nervous like I was. I'm just excited now to be on the other side. I know I won't get much sleep tonite. Have to be in Cleveland at 6am. Best of luck and praying for everyone having surgery this week. 💜

Just got home from a long day having my heart cath at Cleveland Clinic. I was a little disappointed because I was hoping to have it through the wrist, but since I have Reynauds Syndrome they had to go through the groin. Had to lay flat 6 hours. But the good news: No Blockages!!! Then back up tomorrow to meet the doctors. I can't believe this is all happening in one more day. My poor daughter didn't feel well yesterday and now is coughing. I sure hope I don't get what she has. She'll be the one taking care of me. Good luck to all having surgery this week. I'm praying for all good outcomes. It will feel so good to finally say "It's over!! We did it!!"

Well I have one more week until my surgery. Spent the day today at Cleveland Clinic for pre ops and I'm exhausted! Then back to Cleveland on Monday for a heart cath. Hoping there are no blockages! Back on Tuesday to meet the doctor and surgery on Wednesday! Wondering if anyone with a previous stroke had any problems with this surgery. I have no residual effects from it. I know I'm in a great place and am trying to think positive but am still nervous. I can't wait for this to be over and to feel better, have some energy and not be out of breath. Reading all your stories gives me so much hope and courage for which I am grateful. Thinking and praying for everyone with upcoming surgeries and for all those recovering. 💜

Has anyone had or known someone that had plates to close the sternum instead of wires? This is a fairly newer procedure I think and was wondering if it was a better way. I've read where some people were bothered by the wires and wanted them removed years later.