Mitral Valve Repair/Replacement

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J

Jkm7

Well-known member
Joined
Oct 15, 2005
Messages
4,384
Location
Massachusetts
Like many of you have commented, when it goes bad, it goes bad fast.

I had an echo on Monday, met with my Cardio today and the three years I've been in the waiting room are about to come to a conclusion as I move to the surgery list.

I hoped I'd stay stable as I had for a this time span but it didn't happen.

Cath and Tee next week and if my cardio has his way, surgery by mid February.

I posted earlier today asking for comments about surgeons at Mass General who may do more Mitral Repairs/replacements than one of the others. The two I am specifically interested in are Dr. Alan Hilgenberg and Dr. Gus Vlahakes. Dr. Hilgenberg did my CABG four years ago and he was wonderful to me but CABG is not valve.

I'm still trying to wrap my head around the fact this is moving so quickly. We had a cruise planned for mid April but doesn't look like that is going to happen. (Obbviously, that is the least of my worries.)

Thanks for listening. No one understands the way everyone here does.
My DH is being fantastic and came home with red roses for me tonight and he knows the care I'll require again and is so willing to provide all I need. I'm a lucky woman.
 
Flowers from your sweetie? Very nice!

Did you get trip insurance on the cruise? If not, try to get your refund or whatever anyway. Maybe your husband can slay that dragon for you.

Hoping all goes well for you with your surgery. When my valve was going bad, I felt so awful. And then later, having a properly working fuel pump for your body--complete with healthy valves--is amazing!

Hope you're feeling better soon!
 
Susan.... Thanks for your nice message. We are very fortunate that we were not making our final payment until January 31 so we won't lose any money except maybe a change feee for our air tickets. Our deposit with the cruiseline is fully refundable until the time of final payments.

Thanks Bina for your supportive note. I appreciate it.
 
Hi Jkm7,

I know how you feel.Sounds like we will both climb the mountain in February because of our mitral valve. Things seem to unravel fast.:( I keep focusing on the hope that in 30 days I will be recovering. The success stories from all the veterans at VR sure helps keep those of us in the waiting room sane.

God Bless:)
 
Don't cancel the cruise until you have to. If you still have the time and money, 2 months after surgery will be a great time to take a vacation. You should be feeling good by then, and cruises are pretty relaxed.
 
So sorry to hear your news about upcoming surgery. I noticed in your other post asking about the MGH surgeons that you suspected you might get this news after your echo. If you don't mind me asking were you having symptoms? and how long ago was your prior echo? I'm curious since I have a problem with my mitral valve as well and have been sitting in the waiting room for 3 years and 5 months (but who's counting?)

I'm certainly glad that you will be able to get a refund for your cruise! And hopefully you can use the airline credit to schedule another trip after your surgery is over and you are feeling better and are more relaxed to go away. Ironically we were planning a cruise to celebrate our 30th anniversary when we found out about my valve issue and we quickly threw the idea out the window! I wasn't having any symptons but it was a a shock to be told I had a problem with my heart and I was a little nervous about being on a cruise in the middle of the Caribbean or on some little island worrying what if something happened. Fortunately my dear husband was very supportive and didn't balk at all over the change in plans. We went to Las Vegas instead and treated ourselves and stayed at the Bellagio.

I wish I could share information about surgeons but I'm nowhere near that stage yet. I've poked around on MGH, Brigham & Women's and Beth Israel's website just to get a feel for who's who just in case but I haven't a clue. My cardio is affiliated with Beth Israel so I'm not sure if that's where I would wind up although my PCP belongs to Partners healthcare so that could mean MGH or BWH. BWH is opening a brand new cardio building across the street from the main hospital but not until April which is too late for you; however, you seem like you were happy with MGH for your CABG.

I am sending you lots of positive thoughts and prayers as you prepare for your Cath and Tee for next week. Will be looking forward to hear what develops next for you.

Take good care of yourself!

Susie

P.S. don't forget to stop and smell the roses! Enjoy!
 
Being in the waiting room too I think I can understand how you are feeling. The wonderful stories of recovery here are absolutely inspirational and I know you will do well too.

I live in NH, just over the Ma border and get all of my medical care in Boston. My cardio is at BWH but I am planning to have the surgery at MGH with Dr Vlahakes. He has been recommended to me repeatedly and my one hour meeting with him a few years ago convinced me that he was the one to do the surgery. Given the new cardiac bldg opening at BWH I wish he operated there but I think the MGH will have to do. Wonder if you have met with Dr V?. Since you already know Dr H maybe meeting with V would convince you one way or the other. If Dr H's specialty is CABG maybe he would even recommend that you have Dr V for the valve.

Take care and think positively!

Best regards, Barbara
 
Please let us know when and if you have a surgery date, so we can put it on the calendar. I agree that if the surgery is in Mid-February, you may very well be able to take that cruise in April. Dick's surgery was mid-December and we traveled to our winter home 7 weeks post-op and then spent 10 wonderful days in Aruba at the end of February.
 
I agree about the cruise being very possible. I know each person is different, and there are some who have had complications, but in general, two months after the operation, the chances are you will be able to go and to have a good time. The thing that is great about a cruise is that you can do as much or as little activity as you want to.
 
Thank you all for your wonderful supportive responses. They really help hugely.

The least important part first: We actually have another cruise past the April one booked so I know that if we cancel there is another all booked. It is extremely disappointing to cancel that particular one though as we have some very close friends who are senior officers on that ship and we had special plans with them for sailing together. If I had a firm surgery date, I would take the chance and hope for the best and make the final payment. Seeing as I don't yet have a firm date, we risk losing a lot of money if we make the final payment on January 31. If only we had another week to ten days before the payment is due but that isn't the case. In the end, it's only a cruise.

More importantly is that I have decided that if Dr. Alan Hilgenberg at MGH is available and willing, he is who I want to do my surgery. I was very grateful for the excellent care he gave me my last OHS and among doctors with whom I have spoken about my choice of surgeons, they have all headed me back to him. IMO, you cannot go really wrong with any of the Heart/thoracic surgeons at Mass General. I shall have to be contacting his office as I have not yet done so.

My cardio understands me well and is 'so there for me' that it is immeasurable how indebted I am to him for that. We met in the ER when I was having my heart attack and he has taken good care of me through all my heart situations. I will so badly need his help getting through this valve surgery.

Though I knew of the mitral damage due to my heart attack and my cardio has followed it closely with echos every 3 -6 month, I was not really prepared to hear at this week's appointment that now is the time. I had remained stable for long enough I was starting to feel a bit comfortable about it. Look what happens when you let your guard down a bit. :)!

Susie, to your question. Do I have symptoms? Not really, I don't think. I can do everything I want to do. It may take me longer but I have never been a frenetic, rush around, whirlwind type person. I do all the usual housekeeping things, lugging groceries and such. I walk about 2 miles most days of the week. I don't think I have symptoms. Maybe after successful valve surgery I might discover I did after all have limitations I ignored or didn't recognize.

I admit to being in a less than great frame of mind at the moment. I am trying hard to find that 'good attitude' that my doctors have remarked is one of my strengths but at the moment, I'm thinking all the worst things....about all the possible complications and negative outcomes. I need to get a grip as they say. My chest still aches on cold days, when we're getting rain or snow, in high humidity. The day I saw my cardio was extremely cold and my chest was very sore. All I could say to him was..... I still hurt from the last one four years ago and now I have to think of another!! It can be quite overwhelming.

My husband is amazing and is my rock but I don't want to put added stress on him through this. He is clearly shaken and worried and seeing as he has high stress levels in his profession and I worry to not overload him with it all. He has seen me through one OHS and will do so again with love and gentleness and sensitivity. But it isn't easy.

Besides, it is you wonderful people here who understand it best. Who but someone who has walked the walk fully understands? Who but someone else who has suffered the stress of the 'waiting room', the pre surgery testing and worry and fear and then the actual surgery with all involved to attaining the best outcome possible and the most successful, complete recovery. The mental and physical tolls it takes. You are an amazing group of very heart/valve knowledgable, generous, kind and caring people who have seen so many others 'over the mountain' and through their recoveries. I'm afraid I am going to selfishly now ask for that help for me. Right now I really need it.

I'm sorry this has rambled on so long. I'll try hard to keep future posts more brief. And I truly promise to ditch the 'pity party' business.

Thank you for listening. Thank you for letting me unload it all here. Bless you all.
 
Jkm7 said:
Thank you all for your wonderful supportive responses. They really help hugely.

The least important part first: We actually have another cruise past the April one booked so I know that if we cancel there is another all booked. It is extremely disappointing to cancel that particular one though as we have some very close friends who are senior officers on that ship and we had special plans with them for sailing together. If I had a firm surgery date, I would take the chance and hope for the best and make the final payment. Seeing as I don't yet have a firm date, we risk losing a lot of money if we make the final payment on January 31. If only we had another week to ten days before the payment is due but that isn't the case. In the end, it's only a cruise.
Click to expand...

I know how disappointed you are at having to cancel your cruise. This happended to us in 2006 when instead of going on our cruise I ended up having to have a 3rd OHS for AVR! :mad: Luckily though, I had just put down the deposit & purchased our plane tickets but since I had purchased the cruise insurance, all was refunded to us. Thank goodness!

Take care of your heart issue first & then re-plan your cruise after your surgery. As you said, "it's only a cruise" & after you're healed & well, you can schedule another one! :)

Best of luck to you! :)
 
I'm with everyone else about reconsidering cancelling your cruise. If anything, will they let you delay it?

Before I had my MVR surgery last February my husand and I knew we had a trying time ahead of us so we decided we woud take our family on a cruise after my surger. We ended up not going until Thanksgiving but that was more due to our schedules than my health. The timing was perfect for me healthwise, though. You can't see it very well but my avatar is me climbing one of the pyramids at the Uxmal Mayan Ruins in Progresso, Mexico. I wouldn't have been able to do this before my surgery.

Best wishes for your upcoming surgery.
 
Thanks everyone for the concern about the cruise.

It really is not all that important to me. As I wrote, we have another cruise after that April one booked now. If we miss the April one, we will go on the one we have booked for August.

It's impossible to predict if I'll be ready to cruise mid April. I can't know the chances of my being ready to cruise seeing as when I have to make final payment, I most likely will not yet have a surgery date. Final payment is due in four days. Surgery will probably be mid February but if Surgeon can't schedule me until early March, those two weeks will make a huge difference in whether I'll be well enough. From six weeks to eight weeks into recovery can be a considerable difference in wellness especially if there were any complications or bumps in the road to recovery. But I sure do agree there are fewer places I can think of better for continuing recovery from OHS than a cruise ship. We have been very blessed to have been able to take a number of cruises.
 
Pity Party? More like an eloquent expression of what you are going through--and very well worded, I thought! Take care... and hoping all goes really well and you sail through this one easier than before... and please keep us posted. Best wishes,
 
Thank you, Susan.
Later this morning is my Tee and next week the cath.
Seeing as it has to be, I'm ready to just do it and get the surgery over with and start my recovery.
 
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