Update on upcoming mitral valve replacement

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mom2angel

Premium Level User
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Sep 25, 2011
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187
Location
Nebraska
Here is an update on my upcoming surgery. I've been pushing for surgery for several months, but the Dr. was not on board. My symptoms have been increasing rather quickly. I've been swollen with fluid for 2 months. I think I have had fluid for much longer, but it was finally at the point of being very noticeable 2 months ago. Two months ago they put me on 20mg of Lasix a day. They also scheduled a stress test just to keep me quiet..haha However, they didn't tell me the results until 2 days ago (a month after the test.) Two days ago they got me in for an echo and visit with the Dr. after I called the day before to tell them that my swelling was spreading despite being on Lasix. It started in my abdomen, then also went to my feet. Now it's also in my thighs, and has been in my face and hands for quite sometime, but I didn't pay much attention to it. So, they called in another diuretic to take on top of the Lasix. I take 25mg of it 2 times a day.
On Friday, the Dr. told me he didn't want me to have any fluid on me. He said if these two pills don't take all the fluid away, then I should double up on the Lasix and take 2 20mg pills a day instead of 1. I am planning to add a second pill tonight, since I gave it a few days to work. They are also having me keep a daily weight log, so they can see what my weight is doing. I started the log Friday morning. Saturday I was down 1.4 pounds and today I was down 0.2 pounds. So, it's going down now with the diuretics, so that's good.
The Dr. finally told me the results of my stress test. However, he didn't give any numbers. He just said it was down from 2 years ago, so it shows my struggle. He also said the gradient on my echo was 10-12 Friday, when it is normally 8-10 for me. It should be around 3. (This is my St Judes 25mm mitral valve from 1993). So, he is finally on board with me having surgery. I go in this Thursday to talk to the surgeon and schedule surgery. However, he wanted to stress how risky this surgery is. This will be my third mitral valve replacement. He said it was very risky because there will be so much scar tissue. He was afraid the conduction system will get damaged during the surgery and they will need to put a pacemaker in. But, the surgery needs to be done. Not doing it would be worse than doing it. If I was 85, I might hold off, but I am 37 and not ready to live like this, where I am out of breath just sitting down. So, the surgery will happen. He also said that I may never be completely back to normal. He stressed that I may still have symptoms after the surgery. He wants me to talk about all of this with the surgeon.
So, the plan is to do surgery and pray it all goes better than expected and I don't get a pacemaker. On the other hand, getting a pacemaker now might be a blessing. my heart throws irregular beats here and there every day, especially when I'm stressed. A lot of stress will throw it out of rhythm where I have to be cardioverted or have an ablation. I've done this 4 times. I've learned over the years to do whatever I have to do to keep my stress level low to keep my heart in rhythm. So having a pacemaker might make life in general easier because I may not have to worry about trying to keep my heart in rhythm. I have no idea how I feel about all of this. It was a lot to process. I always wanted to be 50 before I needed a pacemaker. I have a lot of folks praying for me, and we will just leave this surgery in God's hands and take go with the flow whatever the outcome.
 
Wow. I just imagine what you're going through. So many things running through my mind, Your health plan (if you're covered by a traditional plan) should have an interactive website that you've registered with. Test results should be available there. Look on the back your ID card and look for the website and/or call customer service. If your doctors aren't providing back and forth communication, you need to press the issue. You're entitled to have your medical records. Hopefully your surgeon has better skills in this area. Seek a 2nd opinion. You deserve that.
 
m2a - Sorry to hear that you're facing this, but I'm happy to hear that you're finally getting some agreement to proceed. One question - if they have prescribed Lasix, have they also prescribed a potassium supplement? Lasix has a nasty habit of depleting the body's potassium, throwing your electrolyte balance off and possibly leading to heart rhythm issues. AFAIK, they always prescribe a potassium supplement with Lasix, but if they haven't done so, do ask for it. If you are to take potassium, ask for the "Micro-K" variety. This is one secret told to me by our late brother Ross many years ago. The potassium tablets are about the size of a small loaf of bread, and go down about as easily. Micro-K is in capsule form and slips down super easily. The does is only half of the tablets, so you are prescribed two Micro-K caps for each potassium tablet you would otherwise take.

Now, about pacemakers, I know this will sound overly simplistic, but having a pacemaker is really a big non-issue. After my valve replacement, they couldn't get my heart rhythm to behave at all. It went fast. It went slow. It tried extra beats. Then it stopped. . . for. . . up. . . to. . . 20-30. . . seconds at a time. Trust me, it is no fun to be in a hospital bed and to see your own monitor go "flat-line." When this would happen, I would go "lights-out." I would awaken and see a ring of very concerned looking faces above me as the docs and tech's did their jobs and got me going again. In my case, I did not go into cardiac arrest, my heart just stopped for a while and then re-started. They tried various medications and after about 4 days they asked me if I wanted them to continue trying to regulate me with drugs or if I would "accept" a pacemaker. I asked them "Do you have a pacemaker on the shelf? If yes, what are we waiting for?"

I am now on pacemaker number 2, as the first was retired last summer when we had to replace one of the leads. After some initial work to get the adjustments right for me, the pacemaker is now just an artifact. I still go to the gym and exercise and lift weights 5 days a week. I do anything and everything I did before, with no issues. The only time I really realize I have the pacer is when I look in the mirror with my shirt off. I have just a small lump just below my collarbone on the left side. It is pretty obvious because I'm a sort of skinny old rat. The newer pacemakers can increase your heart rate as needed for work or exercise, and some of them only need to "visit the clinic" for interrogation once a year. Yes, at your age you can plan for a number of replacements, but replacement is normally done on an outpatient basis with local anesthetic. The pacemaker "generator" usually lasts between 6 and 9 years, depending upon the model, and the leads usually last 10-15 years.

Now - the time you've spent reading my post is about all the time you should spend worrying about the "maybe" of a pacemaker. They are just something that can be implanted if a conduction issue arises. They do not restrict your life in any meaningful way.

Hang in there. Get that valve "done" and get back to a regular life. It is there for you.
 
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Thanks for the update. That all makes sense why your cardiologist wanted to delay, due to the risks. But it sounds like both his tests and your perceptions of symptoms and restricted quality of life are giving a clear decision. You'll be in my prayers too for a skilled surgeon and a good outcome.
 
You are one brave lady and I admire your perserverance in keeping on top of the doctors and getting them to agree to surgery. Keep us posted as things progress. Big hugs to you~


epstns , Steve, I am prescribed Lasix as needed but nothing was said about potassium supplement, maybe because I do not take it regularly.
 
Thanks for all of the advice. And, Steve, thanks for your info about pacemakers. I learned about the possibility on Friday, and it was a lot to process. I've had a few days to think about it, and I think a pacemaker might be a blessing for me. For at least the last 10 years, my heart has thrown irregular beats periodically. It will feel like it skips beats, palpitates, beats too fast, etc. It used to only do it when I was very stressed. In the past few years, it's been doing it every day. It's a scary thing. For several years, I've had to make life decisions based on trying to keep my stress level low to keep my heart in rhythm. If I get a pacemaker, maybe I won't have to constantly think about the affects on my heart when I make my daily plans. For instance, I work a few days a week, because I am afraid that staying home full time will throw my heart out of rhythm. Life would feel a little more free if a pacemaker took those worries away.
When I had epilepsy, memories would trigger seizures. I love music, and music triggers memories. Therefore, I completely changed the type of music I listened to in hopes of having less seizures. Also, I had to be careful of what I talked about or thought about, because memories would cause seizures. It could be something simple like talking about what I ate for lunch last Friday. I'm assuming that the area of your brain used in recalling events was the area with the damage. Anyways, I remember how freeing it was after brain surgery to not have to worry about any of that. I could talk about that conversation I had with a friend last week with no worries, and I could listen to the music I preferred. I'm hoping a pacemaker will help my heart and take the stress and worry out of whether the things I do each day will throw it out of rhythm.
There is a friend in my hometown named Brett. Brett got a pacemaker at 39 years old. He just got his second one this year at 49 years old. I have talked to him about his pacemaker in years past, because I always figured I would need one eventually. I actually ran into him this Sunday and got to talk to him more. He has had no problems in 10 years. He let me feel the pacemaker in his chest, and it was barely noticeable. It was great to run into him and get to hear about his too.
Lastly, the surgeon doing my surgery is the same one who did my last valve replacement in 1993. That puts me at ease. I might not be the most thrilled with my cardiologist, but I am comfortable with the surgeon doing my surgery. Thanks everyone.
 
I haven't heard anything since meeting with the surgeon on Thursday. It's now the following Wednesday. The surgeon did say that they might want to put me on potassium if they keep me on 40mg of Lasix for awhile. Thank you for the advice on that. I think I will call them today to ask about Potassium, and hopefully get the ball rolling with some dates. Thanks everyone.
 
Blimey, that is a lot to process and not get too stressed about....

Good luck with it all, sending you positive vibes
 
dornole, they did not give me a timeline. They originally said surgery would probably be 1st or 2nd week of December..possibly even the week after Thanksgiving.
When my nurse called back yesterday, she said it probably just hasn't been long enough for them to get any appointments scheduled. She said they are probably working on it. She also said they don't plan to put me on potassium since I will only be on Lasix until surgery. I did get conformation from the surgeon that we can do the surgery this year. For insurance reasons, this year will be much cheaper for us than next year. Though, I'd love to have a date, I'm cool with going with the flow. I've learn to be able to be able to go with the flow over the years.
 
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