29 with severe mitral stenosis - a few questions

[danjayh]

Hello! Glad to be finally making my first post - after two registrations and lots of waiting, it's nice to be in. I'm 29 years old, and have a severely stenosed, highly calcified mitral valve. Apparently I had rheumatic fever as a child - very rare in North America, I guess I just got lucky .

I've seen three doctors, and I've settled on doing my surgery at the University of Chicago medical center with Dr. Jeevanandam. He does a lot of volunteer work in other countries, and has dealt with many calcified, rheumatic-fever induced failures (most doctors in the US have not). With this decision made, I am left with only two more: valve type, and surgery type.

For the valve type, I am leaning towards On-X, but to be honest, I really like the sound of a tissue valve. I like a few sports in which it's probably to get knocked around (water & snow skiing, and a few others), and I live on 11 acres, and there's a good chance my head will get hit while maintaining it. Despite all of this, I'm still leaning towards an On-X because the proposition of a re-op in ~5-10 years (I'm told they come fast for 29 year olds with tissue valves) does not sound appealing to me. Any thoughts on the pros/cons of each of these for someone my age? (Actually, finding mitral valve replacement stats for 20 or 30-somethings has been an exercise in frustration - they just don't seem to exist)

The second issue is surgery type - Dr. Jeevanandam told me that either a mini thoracotomy or a full sternotomy were both options. I got the impression that he was trying to encourage me to go with the sternotomy, because it'd allow him to set me up better for a re-op just in case I ever need one. I like the mini-thoracotomy because I really like the idea of not cutting through any bones. To those of you who have been through one or both of these, how were they? What were the recovery times and pain like? Has anybody had a re-op after a mini thoracotomy?

A couple of final questions (not really related to valve choice) - we're going on a cruise for our honeymoon ~2.5 months after my surgery. Should I 1) be worried about being out in the middle of the ocean so soon after the surgery (I checked, and Royal Caribbean can do INR measurements on-board). 2) Cruise lines like to constantly push alcohol on their passengers, and I'd be a liar if I said I don't buy any of it How big of a deal will this be if I'm on coumadin for this next cruise? Do I need to avoid it entirely?

Finally, are those used coaguchek s meters on that can be had on ebay for ~200 any good? The fact that I can buy that whole meter for what it'll probably cost me to have the cruise line do my INR is pretty tempting.

Glad to have found you guys!

 

[Freddie]

Hi and Welcome Dan.
You have some very good questions and should be asked to your doctor.
With a sternotomy it takes about 6 months for the bone to heal, sometimes longer. I went to British Columbia 4 months after surgery and even then I found it tough.
Depending on what kind of medication your on after surgery, you might have avoid alcohol completely on your cruise, again ask you doctor. There is a chance you might be on other meds other than warfarin during this early stage of recovery.

Everyone is so different on how they recover.

 

[Greg a]

Hi and Welcome Dan.
You have some very good questions and should be asked to your doctor.
With a sternotomy it takes about 6 months for the bone to heal, sometimes longer. I went to British Columbia 4 months after surgery and even then I found it tough.
Depending on what kind of medication your on after surgery, you might have avoid alcohol completely on your cruise, again ask you doctor. There is a chance you might be on other meds other than warfarin during this early stage of recovery.

Everyone is so different on how they recover.

Dan, WELCOME TO OUR FAMILY, congratulations on the pending nuptuals and ss Freddie put it so well (the sternum os a SOLID six weeks healing and fragile for longer)
I would say the same you have no idea at this time the meds you will need and not to scare you BUT my surgery was May 11, 2007 (see below) but I developed a massive MRSA and by August was readmitted to havea radical sternectomy that saved my life you just never know
Keep reading the forums and draw your own conclusions BUT READ, READ and READ AGAIN

 

[dick0236]

Hi Danjayh and welcome. One school of thought for me was that I also had misdiagnosed rheumatic fever as a child...the other school was that I had a bicuspid valve. Either way, surgery corrected the problem. I was 31 at the time of my surgery( mechanical valve that I still have) and have had the valve interfere very little with my lifestyle, including water skiing, white water rafting, home building projects and "rough housing" with two sons as they grew up. I had the valve implanted long before the internet was born and nobody told me how dangerous:tongue2: some of my adventures:cool2:...and mis-adventures:frown2: were.

I have no experience with surgeries other than the full sternum opening and can offer no input on the modern techniques...other than a cruise after only 2.5 months MIGHT be a little soon.....and let your doctors counsel you about "drinking on board".

Personally, I would not buy a $200 monitor off ebay to keep from testing on-board. Odds are that the cruise won't be long enough for the need for multiple testings, if needed at all.

Welcome aboard:thumbup:

 

[ALCapshaw2]

My understanding of sternum healing is that it takes 6 WEEKS (not months) to reach 80% strength and should be 100% healed after 12 weeks. Chest Pain is typically NOT an issue following a sternotomy. Most describe various levels of 'discomfort' that is well managed medically in hospital. Many patients are discharged with nothing stronger than Tylenon or a mild prescription pain medication.

Back and Shoulder Pain are moderately common after-effects due to how you are positioned during surgery and for how long. Most find that MASSAGE is Faster and Better than pain medication for relieving muscle pain.

I think the On-X valve is a Very Wise Choice, especially for the Mitral position.

Moderate alcohol consumption (a couple of drinks?) should be OK, especially if you are monitoring your INR, say weekly.

It sounds like you have done your homework and are ready to 'Get Fixed'.

Best Wishes,

'AL Capshaw'

 

[Eva]

Welcome aboard!

As I recall, my doctor told me the same as As Al mentioned...it takes 6 weeks for the sternum to be 80% healed, and 12 weeks to be healed 100%. I too encourage you to share these questions with your cardio, since your cruise will be around ten weeks after your surgery and we all heal differently. I would also ask the doctor about luggage lifting and some tips of how to avoid catching any bugs that might affect your recovery. I personally was a chicken and I avoided big crowds for a long time! but that is me and I am an over-cautious type.

Good luck.

 

[Freddie]

I apologize for the miss information that I had written. Yes indeed it should have read "weeks" not months for the sternum to heal.

 

[Jkm7]

Hi and Welcome.

My first surgery, my cardio and surgeon both cleared me to travel (fly to Fort Lauderdale to board a cruise ship) at about 9 weeks post op. I managed and did okay. Nothing drastic happened to me but I was very tired and could not fully enjoy myself. It was safe enough but it wasn't 'fun enough'.

I've had two OHS and know for sure I babied my sternum and followed weight lifting limits and all restrictions to the letter. If one does not let that bone heal properly first time around, it can be a long time problem.

I have bovine mitral valve and for me that was the right choice but I am older than you.
Choice of valve is a very hard decision. As most say here, there is not wrong choice other than to not make a choice and go forward with the surgery.

All best wishes. Let us know how things go along for you.

 

[Elcarim]

Hey there!
Are you planning on having any babies? If you are then a tissue valve, even if it is temporary, could be a good idea. I had my two kids while I had my tissue valve and my pregnancies were straightforward.

I was back on a horse six weeks after my first surgery ;-)

 

[Michelle D]

I had a repair so I can't advise on types of valves but for me the bone healing wasn't so bad as the nerves healing. I spent about 9 weeks post op with my chest covered in ice packs. They younger you are and I was 27 at the time, the more nerve endings you have. It wasn't excruciating, just unpleasant like having a pulled muscle.

 

[danjayh]

Just a quick follow-up: I was thoroughly impressed with the U of C medical center. I did decide to go with a sternotomy, and Dr. Jeevanandam did beautiful work. My incision is only 5-6", and he closed with subcutaneous sutures and steri-strips; I'm told that there should be minimal scarring (titanium plates were left in my chest to hold the sternum together, instead of wire). It's all rock solid.

I went to the local Urgent Care the other day to have my chest tube sutures removed, and the doctor there actually called the head physician into the room just to see my sternotomy - they both said it was some of the best work they've ever seen. Dr. Jeevanandam was also able to do something with the sutures holding the valve in (I think maybe he used more than normal?) to make it less likely that I'll have complications from any of the sports that I like. Finally, he left a gortex sheet in my chest to keep everything from sticking together due to scar tissue (in case I need a re-op) ... if you can't tell, I think he did a bang up job.

One other note, I was also happy with the follow up care. While performing the surgery, they discovered that I had a burgeoning case of pneumonia that had been below the threshold at which pneumonia can be detected (I've been struggling with pneumonia on and off for the last year). This made my recovery more complicated, but I was very happy with the care I received, and I was also extremely impressed with the ICU. One thing that stuck me about the hospital: almost every person who I dealt with was both competent, and equally important,nice. The nurses at our local hospitals all seem stressed and overworked, but the people at the U of C were always kind and happy, and did everything they could to make my stay more pleasant. It really stood out.

 

[Lynlw]

I'm glad to hear everything went so well and you are very happy with your decision to go there.