Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin
Hello everyone. Thank you for the information provided on this site... I wish I had discovered it before surgery. I am a 45 year old structural engineer from Newfoundland, Canada. I was diagnosed with a mitral valve prolapse in the early 90's and I remember my cardiologist saying that surgery is often the case in a person's late 40's. Well here I am! In July I was hiking in the Rocky Mountains and in the 6 months that followed, I experienced quite a lot of fatigue and shortness of breath. I couldn't walk my dogs around the block. I had severe regurgitation of the mitral valve. My surgeon said both leaflets were leaking making this surgery a little more difficult... a "7 out of 10". He gave me an 85% chance that he could repair the valve.
I struggled on through Christmas waiting for my surgery to be schedulled and had a trans-echo and dye test. Finally the day came, February 10th. I went in early in the morning and apparently spent over 8 hours in surgery. When I came to and realized I was not dead I immediately knew the repair was not successful as I could hear the ticking. He tried a repair, restarted the heart, did an echo cardiogram and found mild to moderate regurgitation so a new valve was in order. I received a Sorin Carbomedics Standard Mechanical Bileaflet Valve model M7-031. I was in hospital 8 days instead of the 5-6 days I was told is normal. It felt like I had been hit by a truck. I had two large drain tubes in my chest that made it pretty hard to breathe. These were also rubbing my heart apparently. I was so grateful when these were removed. Whatever breathing tube I had during surgery had mashed my lips into my teeth and my lips were swollen, cut, and very numb. This took about two and a half weeks to go away. I was starting to worry there was nerve damage. I also experienced a change in the way I perceived taste of my food. That made it more difficult to eat and took several weeks to come back. I had gained some weight before surgery and lost 10 lbs while in hospital so I didn't think that was too bad. Fortunately, I had very little pain from the 6" incision in my chest. It is healing up nicely. I was quite happy to leave the hospital and the 7 other patients in my room. I am forever grateful to my parents and girlfriend for looking after me at home. Five weeks later I am looking forward to getting back to driving. I can do stairs in the house like normal and my wind seems to be back. I am still very fatigued and I have had several instances where two fingers of my hand go numb for about 10 mintues. I hope to see my doctor about this. I feel my pulse is high during rest. It's a fairly consistent 98 beats a minute. I am taking metaprolol... 50 mg twice a day. I don't know if this will continue. I think it's to prevent atrial fibrillation. I see my surgeon on April 1st. I am back to work at my desk but only because I work from home. I am able to take breaks or naps if I need. My employer has been very supportive. No snow shovelling for me this year!
A note about warfarin. I am an avid motorcyclist and I love camping in the outdoors. Initially I was getting testing in the clinic twice a week. It took a while to get into the 2.5-3.5 range with my INR. I ordered the Coaguchek meter as soon as I could and tried to get a reading on the same day as my clinic to compare results. I had a hell of a time getting a reading. I spoiled a lot of strips and they are about $9 Canadian each here. I was getting quite disappointed. I finally found this site and it encouraged me. I found and watched the You Tube videos. They should really direct you to this in the manual right away. I have now been able to get a successful reading on my meter. I am still going to the clinic for now until I am totally comfortable. My techique involves "windmilling" my arm around before lancing my finger and applying the blood drop to the side of the stripe instead of trying to drop it into the middle of the semi-circle. So for anyone struggling with this I encourage you to keep trying. This will help you gain independance.
Each day I feel a little better. I try to find something positive and focus on that. Yes I had hoped to feel better faster and I was really hoping the valve could be repaired and I could avoid the warfarin therapy. However, that is not my reality and I have to face up to that. I can not wait to get back on my bikes in the Spring and travel around. One day soon I will ride to Alaska and the Arctic Ocean. I have lots left to do and I have two teen aged daughters that I want to see grow up and live happy and productive lives.
Thanks for reading, sorry if it's a bit long. Ask away with any questions you might have and I appreciate any advice on the numbness in my fingers or the fatigue I am experiencing in week 5 of my recovery.
Great post Tony ! good luck to you and enjoy a long and happy life.
Kevin Toulouse France.
Glad you are feeling better – it’s a day by day thing. Don’t worry about feeling tired, it is completely natural & understandable, I was tired for months especially in the afternoon but eventually you will feel great. Before my Op (Aortic value & Ascending aorta replacement) I expected to be back at work after 4weeks – I was thinking far too positively! I listened to my body, rested when it told me….. Was back to work, phased back after 8weeks.
It took me many weeks to get my taste buds back too. Didn’t have any numbness, so sorry can’t help with that on, as you say talk it over with your doctor.
I definitely helps if you can have a Coaguchek meter, great kit. It took me a while to get the technique too. I drink a glass of water before the test, wash my hands with warm water, dry them, massage the finger the lance it and like you I apply the drop sideways on to the stick.
Yeap, this is a great site full of great helpful people.
Best regards and remember healing takes time but you will get there.
I too, have coaguchek & test monthly,no problems ,had two bleeds with torn tendons.in 15 years.Avoid grapefruit! All the best.
Thanks everyone! I got in to see my family doctor today about the numbness in my two middle fingers. I've had it about a dozen different times and it lasts only abut 5-10 minutes. It can happen while sitting or standing. He said that it's nothing serious to worry about. It probably has to do with me putting pressure on the radial nerve of the elbow and the fact that I'm not as active as before. He suggested trying some stretching and some swimming (only as I feel I'm able). Also perhaps some massage therapy. So I will give that a try since I have been feeling pretty good for the last 2 days. Maybe as I approach 6 weeks post op I have finally turned a corner. You really do have to listen to your body rather than trying to tell it what to do.
So with that off my mind I am looking forward to speaking with my surgeon on April 1 to see what he has to say about my progress. I am wondering about the beta-blocker to see if I will have to remain on it.
Had a great meeting with my surgeon last Friday. He is pleased with my progress and I must say I have been feeling a lot better in the last week. My energy levels appear to be coming up to where I no longer need a rest during the day or a nap. This beta-blocker that I'm on... Metoprolol (50mg twice a day) is kind of a nasty drug with lots of side effects. He prescribes it for 2-3 months to combat the possibility of atrial fibrillation (which I had during surgery). I have not had it since and I should be able to stop this drug in another month leaving only the warfarin. I am also back driving again and even did 100kms on my motorcycle on the weekend as the weather warmed up here and the snow disappeared. Also got to do a hour hike with the dogs. So it's taken me all of 7 weeks but now I can definitely see the progress and say that it has all been worth it. My surgeon also mentioned that some of the numbness could be due to how I was strapped down during surgery and the fact that opening the rib cage can put pressure on some nerves in the spine and neck. At least it is nothing serious to be concerned about.
So I guess Winston Churchill was right... "If you're going through hell, keep going". You'll get through.
Really glad you had a great meeting with the surgeon and that you are feeling better. It is definitely worth it :)
Thanks Martina. I thought it would be good to follow up as I got answers to some of what I was experiencing earlier in case someone else was going through the same thing. It's feels good when you really start to see some gains after struggling for several weeks. It is important not to give up. Everyone progresses at different rates.
Thanks Chris. I am now almost 7 months post op. I did a 3,700 kms, 10 day motorcycle trip near the end of June and it worked out great. I tested every 3 days with the meter and had only one problem... one rather cool morning wakingup I the tent my meter would not function. A small thermometer was showing on the LCD screen. I held it under my armpit for a few minutes to warm it up and it worked!
A few weeks after returning from the trip I started to feel poorly again. I had a couple of episodes where I had to pull over when driving and I had a case of double vision. I now recognize that if my INR dips into the 2.1 range then I can get these symptoms. I still get caught out eating something that affects my INR. Celery in soup seems to affect me for one.
In August I started a cardiac rehab program here. I don't know if this happens elsewhere but it is AWESOME. Essentially it is a program of exercise and education to get you on track for good habits. We meet 3 times a week from 7:30-9:30 for 36 sessions and then twice a week from 10-12 for 24 sessions. We start with a warm up, then walking a track at a pace designed to keep your heart rate in a target zone. Finally we do some weights and stretching. There are about 27 people rotating in and out of the class. most are older and have had bypass surgery. But there are some with new valves and it has been great speaking to then to discover they have had similar experiences as me. the literature I was given certainly did not prepare me for the length of time that recovery is taking. Each week I am finding that I am regaining my energy to new levels and I am quite pleased with progress. You really have to keep at it; progress for everyone is different I guess. Not saying it is easy just that it is worth it.