Rebecca's Journal

got the TMVR for my mitral!

I had my mitral valve replaced transcather on Jan7. Went well. The only concern is I have to be on babyaspirin. . I get GI bleeds very easily from AVMs in my small intestines.. already had one hospitalization since TMVR and hgb got very low. Needed lots of blood.
but cardiology says I cannot not take the baby aspirin. This procedure is so new there’s not enough data to support me being off.. kinda like Russian roulette……maybe. So here I am. I am very grateful the mitral lasted 12 year and I got the new procedure. But I’ve gotten a lot of blood transfusions since Thanksgiving. Hopefully I’m on reprieve for now. Tricuspid valve will have to be addressed one day.

Had the TMVR yesterday. New mitral valve doing well. Home today. Yay!
it was a hard day yesterday. Not as easy as I thought. But I didn’t have to have open heart this time!

Hi, after 12 years with a bovine mitral valve replaced, the mitral is still ok. What isn’t ok is the tricuspid valve. It’s severely leaking and needs to be addressed. Trying to get on schedule for TEE and heart Cath. Not the best time of year for an emergency. Not sure how long I can wait for a procedure. Not a surgical candidate. They want to use a tricuspid clip. Anyone experienced this?

Hello everyone. I had open heart surgery 12 yrs ago to replace the mitral valve and annuloplasty of the tricuspid valve. The tricuspid valve is having severe regurgitation causing symptoms. Shortness of breath, swelling and fatigue. Please share your experiences with repair/replacement of the tricuspid valve. Open heart vs minimally invasive vs catheter repair or tricuspid clip. I’m almost 75 and scared!

It’s been 10 years since I received my new bovine mitral valve! It’s still going. The tricuspid leaks more and I’m now in Diastolic heart failure, keeping close monitoring of my sodium and fluid intake. But I feel pretty good!!! Thankful to God for my Dr Vu Nguyen who discovered the stenotic valve and my awesome surgeon, Dr Steve Diwan, who replaced it.

I’ve been diagnosed with A-Fib/flutter. Scheduled to see electrophysiologist. Please share what you’ve had done, your experiences. I’ve had RFA for SVT’s a very long time ago.

Hi folks! I just celebrated 9 yrs with my bovine mitral valve. I hear it’s got maybe 10 to 15 years lifespan. Anyone have any experience to share with me about yours? Have you had it replaced? Was it robotic or open chest? Where did you have it done?

It’s been 9 years since I was given a new tissue Mitral Valve. A lot has happened. My tricuspid valve is leaking more. And now I’m having atrial fib/flutter. My doctor prescribed a beta-blocker. If I cannot take blood thinners due to a gastrointestinal bleed, my Dr recommends the Watchman device. Does anyone have an experience with having this device?

August 28, 2013! Three years now since I had open heart surgery to replace my Mitral Valve and a ring placed on my Tricuspid Valve. I wasn't sure about sending an update, but hopefully it will be encouraging to those contemplating or already scheduled for valve surgery. I am doing great! Most days I don't think about the bovine valve in my heart. I have lots of energy. No, I haven't run any marathons. But it's nice to be able to mow the yard or cut down tree limbs or pull weeds without stopping for rest. Yes, I was scared to schedule the surgery. Yes, I was in ICU and wondering what in the world I had done. I had really bad fluid retention when I got home, but Lasix is awesome. Today, I don't remember the pain or the fear. God has truly blessed me with life. When I think about having my heart stopped for four hours and then it started again........Wow! I am truly grateful and amazingly blessed.

Last week I had to have Cardioversion for Atrial flutter........a whole year after Mitral Valve replacement. Not a happy camper. Now I'm on Xarelto indefinitely. If I'd known this was a possible effect of the surgery, I'd have taken a mechanical valve instead of the tissue one. And I wouldn't have had to look forward to valve replacement some day.

One year ago, today I was on heart-lung bypass and receiving a new Mitral Valve. Hard to believe it has been a year. I am so blessed to have made it through the whole ordeal. Yes, it was an ordeal........not a cake walk. I have to be truthful. I remember post op thinking, 'what have I done?!' So many central lines and chest tubes and stitches. So much to overcome. Praise God, He brought me through all the days of recovery when I was so swollen, my clothes wouldn't fit and it was hard to breathe, let alone walk around the block. Praise God for Lasix! Praise God for friends who visited and brought food. Praise God for a husband who loves me and took such awesome care of me. And praise God for all the friends I met through this site......all the encouragement before and after the surgery. The comraderie was awesome! Most days I do to think about the cow valve I have or the ring on my Tricuspid Valve. No more twinges of pain around the incision site. Even made it through the mammogram recently. Postponed it a few months so it wouldn't hurt so much. Now, I am retired from nursing. It's been 7 months. My stamina is great. No, I haven't lost those 20 pounds I was hoping to lose, but I feel good. I know, Jim, you have flown right past me in your journey to good health.......as have many others I hear about. We are getting ready for a 2 week driving trip visiting many of the National Parks in the west......Yellowstone, Bryce Canyon, Grand Canyon, grand Tetons, Mt. Rushmore and Crazy Horse and the Badlands! I've never been on a driving trip. I do hope I will be a good traveling companion and not drive my husband nuts! I'll try not to ask, "Are we there yet?" Too many times. This is all country neither of us has seen, so it should be exciting see all God's beautiful creations. I am pretty busy volunteering for the Drive a Senior program. We drive people to doctor appointments or wherever they need to go. The program helps seniors continue to live in their homes a lot longer. What's funny is that many of them are younger than me, but for one reason or another, they cannot drive anymore. I do hope everyone is doing well. I absolutely recommend buying the book 'The Patient's Guide to Heart Valve Surgery'. It's is soooo helpful. And if you are new to this site, I encourage you to keep at it. The friendships and knowledge shared are priceless.

The time has flown by since my Mitral Valve replacement August 28. Most of the time I do not even think about the fact that the valve in my heart was once part of a Cow. It's mind-blowing for sure. I am so thankful to God that I was in the right place at the right time to have a new Cardiologist suggest an Echo just to be sure all was Ok. I doubt I will ever forget that day in the hospital when he gave me the news, and I had been under care of a cardiologist for years. No, no one had ever found the Mitral stenosis! Anyways, I am enjoying retirement much better. It's hard to be doing nothing at times. Seems like I should be constructive at every minute. HGTV and Food Network can occupy too much of my time if I'm not careful. I added guitar lessons to my Dulcimer lessons, so I am busier with that, though not as disciplined as I should be. Physically, I feel pretty good. I would probably be 100% if I exercised more. Still a little soreness in upper part of sternum some mornings. Guess it takes a long time to be completely healed. A friend of mine who needs to see a Cardiologist for possible valve stenosis, said she just didn't want that big ugly scar on her chest. I said that used to be my biggest concern, till I went through chest cracking, open heart, 4 hours on bypass, intubation, extubation and recovery.......along with all those chest tubes and wires and stuff. Now I hardly even see the scar when I'm getting ready to go somewhere. I don't care if my cleavage is showing with that scar in the middle of it. I wear it with pride! I went through it all, and Praise God, I'm living now. Hope all my old post op friends are doing well. I know. I didn't think I'd get to where I didn't post much anymore either. Take care.

Wow, it's already been 5 months since my mitral valve replacement. Where has the time gone? I'm doing well. Retirement is OK. I am having trouble finding my groove.....or whatever you call it. Some days I feel sort of lost because I don't have structured things to do.....like when I was at work. I do not miss the work and the drama, though. I miss the docs and some of the co-workers and especially the patients and parents. I just feel like I should be doing something. Thinking about volunteering, just haven't decided where. Physically I am doing well. Still need to lose 20 pounds and am working on it. My upper chest is stiff and sore most mornings. I have finally been able to sleep on my left side. I'm not hearing the pounding heart so much anymore. A disappointment is that my scar is thinner and less visible below my cleavage, above it is thicker and bumpy. Hopefully that will start to fade some, too. Sooooo excited Rachel is close to going home. God has really blessed her with a new chance at life. We all have been blessed just to be able to get the surgeries and have the opportunity to live better and longer. Blessings to all of you.

I can't believe my last day of work is finally here. I remember when I gave my notice and I thought about how long a month would be. Now it's here. I have been in this job since 2006 and have made so many friends. It will be hard to leave them and the doctors and parents and patients. But it won't be hard to leave the stress and the hard work and being on call. What wonderful news that Rach is getting a heart this morning. Praying that all goes well and Praising God for providing! I don't know how often I will be posting....may be more than I think. I am so grateful for this website and the friends I have made through it.

A week from today I will retired!!?? Sounds strange to say it. Mostly it will be wonderful to be away from all the stress and extremely hard work. What will I be doing with my time? I have some ideas. Healthwise I am doing pretty good. I still have times with fluid retention. The tenderness around my incision is decreasing. Have lots of weight to lose. That will help with my low energy level I am sure. But overall I feel pretty good. Actually the 4 month mark I really started seeing a big difference.......feeling more normal. In a couple weeks I see my Cardiologist for a follow up. Will be interesting to hear what he has to say. I hope everyone is doing well in whatever stage you are in. Remember to pray for that heart for Rachel.

Health wise I am doing pretty well. Pain is limited to soreness around upper portion of my incision and on either side. Tender to touch still. Fluid retention still bothers me. I am taking small doses of the Lasix. The cardiologist wants me to be off of them. I see him in January. Things at work have not been great ....more stressful than before. There are things I cannot change and I feel I cannot effect change. It's very frustrating to say the least. So my husband and I have talked about it a lot. Our desire is for this new valve to last a long time...duh....and leaving the job appears to be the answer. That will definitely decrease the stress level. So At 62, almost 63, I am quitting my job. The docs at work are not terribly happy with my leaving. I am the senior nurse there with all the knowledge. I don't know if I will continue to do nursing on a parttime basis or change directions entirely. I have even thought about Florists school. Anyways, we will see. I hope everyone is doing fine in whatever stage of recovery you are. We continue to pray for Rachel. Bless her heart. She has so far to go.

Today was my first full day of work. I have been half days for 2 weeks. Have lots more aches and pains in my chest....and sharp knife-like momentary pains here and there an inch or two away from the scar. I was worried and called the surgeons office. His nurse said this wasn't unusual....using muscles that haven't been used in months. The sharp pains are nerve endings that are healing. These really hurt......like a sharp hot knife. I was told to take Advil, soak in hot tub, rest. I had my last day at rehab yesterday. My treadmill test went well. They said I had greatly improved. I won't be able to go there anymore because of my work hours.now it's up to me to get the workouts on my own. I should be able to do it. May get a new gym membership. My work day was tiring. Needed help with some things. My job is very physical. I still have trouble with some fluid retention. I need to be completely off the Lasix but don't seem to be able to do that so far. Well, I hope everyone else is doing fine. Continue to think about and pray for Rachel. Have a great Thanksgiving, y'all .

My needs and pains are so small compared to what others are going through at the moment. My heart's desire is for things to turn around be positive Rachel S. My prayers are going up often today and last night. We spend so much energy encouraging each other and believing those in the process will be fine.......piece of cake, right? But the risks are there and we cannot let our guard down. What Rachel is going through could happen to any of us. God is in control and we trust Him......and yet struggle to understand why things go the direction they do.

Work day number 3 this week was harder than I planned. And 2 more to go. I'm only doing half days and today was my first assignment. We do procedures, not bedside patient care. This was needing a lot of leg work and extra attention, so by the time It was done, I was wiped out. Had been scheduled for appt with dietician and then rehab. I cancelled all of it and took a long nap! Still tired, too. Hoping to get a PRN job. I am ready to slow down a bit at 62, almost 63. I want less stress and I want my heart and the bovine valve to last a long long time. I don't want to go through this again! It's awesome how well everyone is doing. Thank God for answered prayers.

Day 3 of back to work. Visited a neighboring dept in the hospital to say "I'm back" and there were so many smiles and hugs to welcome me back. It felt sooo good. Don't know I felt so much in my own dept. After 4 hrs of work, I had lunch and went to rehab. I always said I have more energy in the afternoons. I was able to do 30 minutes on the elliptical (yes, it was low resistance), but not too long ago I could barely do 5 minutes........and I did 15 minutes on the treadmill. And for almost the first time, I didn't have to come home and take a nap. All this after a weekend of loading a lot of stuff into a van and driving 4 hours to deliver to my daughter. And back on Sunday. Of course I was exhausted Sunday afternoon and evening, but I recovered. Still a little soreness in my chest, but it goes away. And the last couple nights I have been able to sleep on my left side and not hear or feel the heart pounding. So glad that finally went away. My scar is long, but it's thin. Everyone says it's not bad looking. I was worried about covering it, but now I don't care. If it shows above my scrub top, oh well. I SURVIVED OPEN HEART SURGERY.......THANK YOU, GOD!!!!!!! I remember the first few days after surgery and I was thinking, "Oh my, what have I done?" It was so so bad and seemed insurmountable. So, you see, there is hope......feeling good for long periods of time does happen. Best wishes to those of you in surgery this past week and those going in this week. Y'all are in my thoughts and prayers.

I was at work today for the first time since surgery. I am to do half days for 2 weeks. I felt great today and yesterday. Got put back on Lasix, lost 6 lbs in less than 36 hrs. Swelling in feet and abdomen. Things happened today.....serious displays of disrespect and disregard for my things and personal space. I am trying to decide what to do since I doubt it will change nor will anything be done......very doubtful. I don't know how much longer I can work there under those circumstances. Will see tomorrow. Otherwise I did fine. Didn't need a nap when I got home. Even had enough energy to do some laundry. Seems like everyone in procedures this week are doing fine. Best wishes and hugs to my recuperating friends. So thankful for the support!

It has been 9 weeks and 2 days since open heart surgery to replace my Mitral valve and put a ring on my Tricuspid valve. It is hard to believe that going back to work is just around the corner. I had planned to accomplish so many things in my recovery time......re-learn Tatting, get through several lessons of Spanish on Rosetta Stone, do some crocheting. Of that list, I have only gotten through lesson one in Spanish. Seems like I always had something else to distract me. Too much TV for sure. How many episodes of House Hunters, Property Brothers, Say Yes to the Dress and King of Queens can one watch in 9 weeks? A whole lot.......and too much. Of course you can throw in a few old movies and I what am I going to do at 12Pm every day when I can't watch The Chew? Ha! Wasted too much time for sure.. Two days ago I got the worst sore throat ever. Went to Doctor yesterday and got Antibiotics and nasal spray. No fever, thankfully, but it has put a dent in my going to rehab.......too much coughing and not feeling strong. Hopefully I will be back there on Monday morning. Things are moving along with my house sale....praise God. The next two weekends we will be busy getting that garage full of stuff sorted and trips to Goodwill, our house and finally to Corpus with the remainder of my daughter's things and we will be done. This time I hired a young man from church to come and help out so I don't have a repeat of last weekend. Though my surgeon was OK and more focused on the fact that I was able to get through the day of garage work than he was focused on the extreme fatigue afterwards. So, the 7th of November is my first day back to work. I will be working half days for 2 weeks with weight restrictions of 20 pounds. Of course at rehab they told me at 6 weeks I was off sternal precautions and I have been using up to 20 pounds in strength training. I probably have been going beyond that a few times at home. My manager approved the restrictions so back to work to I go. I have some stiffness in the chest muscles and some little sharp pains here and there but mostly no pain. The right side of my incision and half my right breast is still numb and sometimes tingly. Guess that will go away in time. I am hoping that once the house sale goes through I can look for something less difficult to work at and with no call time. I am ready to relax a bit in my life........before retirement......if that ever comes. Sounds like everyone is doing fine here. My best to you all.......getting be such a long list, my brain can't remember all the names, but hopefully I have been signing your guestbooks.

Today I saw the surgeon for the last time. He is very pleased. He is releasing me to return to work November 7th and to be halftime for two weeks. I have no idea if they will accommodate me. Will be tomorrow probably before I hear anything. More good news. Today we were told that someone made a cash offer on my house. This is the house I lived in before I married Ron. My daughter has been living it but moved. The house was placed on the market on Friday. We are so excited! I'm 8 weeks and 5 days post op. Last Saturday I worked all day with my kids trying to sort through the remainder of the mountains of stuff in the garage. I worked all day. I didn't feel really tired until I sat down. Of course my kids kept telling me to sit down. And then it was like I had been hit by a truck. And Sunday, I thought I was going to die. My chest ached and burned, my back hurt, I was sooooo tired, I didn't even want to eat. Early Sunday morning, around 1:30am I woke up feeling like my heart was racing. The best I could count was around 110 -120 bpm. I could not settle down to back to sleep until around 4:30 or 5:00 am. The surgeon said he did not know why that happened, it has happened one other time in last week. Anyways, it wasn't until nighttime and after a shower and dinner, that I started to feel human. Today I still feel tired, but the surgeon said as long as I was able to get through the day of work on Saturday, he wasn't worried about it. It would have been worse if I had crashed in the middle of the day! I have totally stopped the hydrocodone. I had a few episodes that felt like withdrawal and wanted them to stop. I just take Ibuprofen. So all in all, things are moving right along. Those of you in this journey, or just beginning, I think about all of you often. It's been so nice having friends to share with and be encouraged by....... Ernie, Nathan, Aubrey, Jim, Gabi, Jeff, Cindy, Lynn, Susan, Carol, Carol, Barb, Debbie J, Tom A, Tom H, ...........have I forgotten anyone? I'm sorry if I have. God bless you all! You are awesome!

With the rain, came a cool front. The morning temperatures are in the fifties and the sun is shining. My husband and I went to a nearby park and took our dog, Belle, for a walk. She loves going for walks. When she sees us get her leash and ask if she wants to go walking, she gets soooo excited and jumps up and down and barks! She is funny to watch. The park was beautiful, all green and fresh and bright. Not sure how far we walked, but I got tired from the ups and downs of the little hills in the park. Three weeks from today is the deadline for me to be back at work. The time has gone by quickly......though at times it has felt like it was creeping by. It's been a blessing to be home with my husband. We work opposite shifts so being together in the daytime is nice. As I have felt better we have gone driving and shopping and and to the movies. Things we don't get to do during the week. I am pretty much off the hydrocodone and filling in with ibuprofen. The main pain I have is to the right of the top of my incision....feels like a hot knife stabbing me in that one small spot. Not sure what that's about. Oh and the occasional burning feeling in my chest. Not bad though. Saw my Cardiologist on Monday. He is pleased that my echo and my EKG look fine. So that's good news. I asked him about the ring that was placed on my tricuspid valve and how long it will last. He thinks a very, very long time. I want to try and remember to ask the surgeon. I have been reading everyone's journals. I know several are up for surgery on the next few weeks. What I wanted to say is I have been having trouble with focus, feeling overwhelmed, and not keeping up with everyone. I am sorry I have been seemingly negligent. It's not that. It's just me. Maybe it's anxiety over going back to work and worrying about being able to do my job. Truly, I was hoping I wouldn't have to go back to working so hard and could go part time. Now it's probably not going to happen for awhile. Anyways, I'm not going to be posting much for a bit. I'll let y'all know how I'm doing at work, once I get back. I wish the best for those having surgeries the next few weeks, Jenn, Barb, Jim, Tony, And Lynn, think. You will all do well and be on the recovery side before you know it. And those continuing to recover, Carol and Carol, and Aubrey, and Cindy, and Debbie, and Susan, and Ernie......keep up the good work. We made it!!!!

Doing better and better. Was off Lasix for a couple days then got really short of breath. Called surgeon and was told to start it again at the high doses for 3 days and report to cardiologist when I see him on Monday. Don't know why I keep having this problem. Maybe cardiologist will have some answers. Oh and I have an echocardiogram on Monday, too. Rehab continues to move forward. Slacked off today. It's been raining cats and dogs. As of 1000 this morning, we had received 12 inches of rain and more rain coming. Woo hoo!!

Went to rehab today and realized due to FMLA rules, I have to be back at work no later than a month from today. I know I haven\'t been working upper body much. When I told the staff at rehab that I only have a month, they got busy and started showing me a workout that I can do at home on the off days. I don\'t know if I will be 100% when I go back to work. I don\'t know if they will make allowances for me to finish up my rehab, or lighten the load for a week or so. My surgeon will have to be specific in my release for work. So we will see. In any case, at rehab, I am told that six weeks is the limit for sternum precautions, so there are lots more exercises I can start doing. Does anyone know what is the time frame for being able to sleep on your side? They weren\'t sure at rehab. I will be seeing my cardiologist and having an echo in about a week and maybe he can answer that question. Seems like so much to accomplish in a month. Time is going by too quickly.

Ok. Well I\'ve been concerned because my husband is so tired. He\'s working full time and trying to take care of everything else. So I decided to try and help. After i went to rehab, I got ambitious and decided to make the Worlds Best Lasagna I saw on Good Morning America yesterday. It took over 3 hours to make. Do I think it\'s the worlds best lasagna? I don\'t know. Wait and see what Ron says. Then I decided to do 3 loads of laundry and fold and put away. I did over do! Was hurting a lot last night. Had to take pain pill. Today we had planned to go start some packing at my house and get it ready for sale. Suffice it to say, I can\'t. My body is sooooo tired and achy. I barely made up the bed this morning. Note to self: Remember to take it slow and easy like everyone says! Have to take care of me, too!

So, I went to rehab today. Even though the workout isn\'t particularly hard, it was enough. I left there thinking I\'d be taking a nap as soon as I got home. Hmmm. Got home. Made lunch for my husband and me. Got on the computer and phone trying to find some information . Before I knew it it was time for husband to go to work and I had not needed a nap. I haven\'t had anything all day for pain. First time for this. It\'s getting night time and I\'m having some twinges of pain, but that\'s all. Am I finally over the hump? Is this what it feels like? I hope so. If I could just sleep all night comfortably . Does anyone know how long I need to sleep on my back? When can I start sleeping on my side and is it because of the sternum healing correctly? I see there are lots of new people journaling these days. Whether you are just getting ready for surgery, just had it, or in the waiting game, it is possible to get through it and feel better in the weeks to come. Just listen to your docs, and go to rehab. It makes a big difference.

I do notice a difference from last week to this week. Walking harder and farther. It does make a difference. Still having trouble with swelling and some loss of appetite. Hope everyone in this journey is doing fine. Keep doing what the doctor orders. It\'s gets easier and easier.