Please Help - My Mom is getting her Mitral Heart Valve replaced, needs encouragement

[kellyjlevy]

Hello,

I joined this forum because my mom is getting her mitral heart valve replaced after it suffered damage from endocarditis from dental work. She has always had a heart murmur and the bacterial infection made it much worse. My mom, Laura, is only 54 years old and in good health so she is getting a mechanical valve.

I am relatively comfortable with the situation and have great trust and faith in her surgeons and cardio team. However, she is extremely scared and very very nervous about the entire thing. I have tried consoling her but she is very scared and much of the mind set 'you don't know what it's like, you're not in my shoes'.

I mentioned to her that she might find comfort through a Heart Valve forum online, talking and interacting with people who have gone through the exact same thing. However, she is pretty much computer illiterate and asked if I could perhaps reach out. So that is what I'm doing. Can someone please help my mom? Does anyone have any kind words for my mom? Or perhaps would be willing to reach out via email any words of encouragement?

You will never know how deeply grateful I would be.

Thank you so much.

All the best,
Kelly Levy

 

[kfay]

Kelly, How nice of you to reach out for you mom. You've come to a great place for that help. We have all either had surgery, or like your mom, are waiting to have it. I'm 48 and have had 2 surgeries and know that I will have at least one more. Many of us found that the waiting period before surgery was worse than the actual surgery and recovery period itself. I know that this was the case for me. Your mind can take you to terrible places. She needs to know that this surgery is done all the time now and the risks are extremely low, only 1-2% for first surgeries. It is not a fun thing, however, it is very doable.

You might see if you have a Mended Hearts chapter in your area. It is made up of people who have a heart "event" and who volunteer their time visiting people to reassure them that we do get back to a good life after all this. Although they typically visit people in the hospital, if you reach out to them, they probably could find someone willing to talk to her on the phone or possibly even visit her.

Try and get her on here, this is a very active board with many people who would be very reassuring to her.

Kim

 

[tprice54]

Welcome! Nice of you to reach out for your mother! Lincoln, RI! I have been woring in Cumberland on and off for awhile! Tell her the waiting is the hard....so hard it seems to make the actual surgery and recovery easier! Tell her to ask us any questions...that's what we are here for....we've all been through it!

 

[dick0236]

Hi Kelly, welcome. This forum is one of the best for folks going thru this, especially if it's their first time. "Open heart surgery", is frightening for any normal person.....however, a few million people, over the last five decades, have come thru it successfully. Help her to educate herself in order to ask relevant questions of her doctors. The internet can be a good source of info, but there is also a LOT of misinformation on the web. At 54, and in otherwise good health, she will "bounce back" quickly:thumbup:.

 

[AgilityDog]

Awww, if your mom was local, I'd take her to lunch!

Been there, done that, twice, in fact. It is scary, no doubt. But she's been properly diagnosed, so now comes the fixing and healing. She'll do just great. I was 47 the first time around, and 50 the second time (2+ different valves). How quickly she'll recover depends upon how healthy she is at the time of surgery. If you are really sick, it takes a while longer.

But get 'er done. This time next year your mom will be feeling so much better.

{{{Hugs}}}

 

[piglet]

Hi Kelly,
Tell your Mom congratulations on raising a wonderful daughter/son! I too had endocarditis from dental work, or so we think. I didn't know that my aortic valve had a defect but when the surgeon went in to replace it he discovered it. I am 51 and my surgery was at the end of April this year. The healthier you are going in to surgery the faster you will recover, so tell Mom to eat as healthy as she can and keep fit so that her body is at it's best it will make recovery easier.
It's normal to be scared, but I am here to tell you, honestly, it's not that bad, surely no where near as bad as she is likely imagining, and it's definately very doable. The only surgery I had had prior to this was an apendectomy at 18. They have this down to a science and I was surprised at how little pain I went through. I was up walking the halls on the 3rd day, and she will be too, it's truely amazing!!

I'm assuming you are her daughter but I just remembered Kelly is a boy name too,

 

[escargome]

Kelly,
How great of you to let us know about your mom. Tell her that I am sending some good vibes and huge hugs from California. Sending hugs to you also. Yes, knowing about a murmur is one thing, being told you need surgery to fix it is something completely different. But she can do it. Get her to come sit at the computer with you if she can and read about our stories and get comfortable with the aspects of the surgery and recovery. Have her write down any and all questions she may have to take when she sees her cardio and the surgeon. I had my aortic valve replaced when I was 56 with a bovine valve in 2008, and will likely have a redo in a few more years. But I know that I will be able to face whatever comes my way. The folks on this site bring so much comfort and good advice when their are those moments of doubt. So come back and chat with us as often as you and/or your mom like.

 

[Jkm7]

I had my mitral valve replaced (bovine tissue valve) at my second OHS in four years and am doing great. Almost all of us will agree the anticipation, wait, worry, stress pre-surgery is so oppressive and such a weight that it's a relief to finally go to the hospital for the surgery.

Of course, it's a very serious surgery but has huge success rate. For us, it's close to overwhelming at times facing the coming surgery but for the professionals taking care of us it is 'another day at the office'. The surgeons are so skilled and assuming you select one who does valve replacements frequently, you have every reason to believe really deep down that Mom will be fine.

I ate half a turkey sandwich less than 12 hours post op, was moved from CICU to step down unit less than 24 hours post op and was walking while still having four chest tubes in me. My nurse set the containers on a wheelchair and had me hold the handles and walk with it for extra balance. I did absolutely fine and your Mom should, too.

My nurses all told me that they consider pain control just as important as blood pressure, temperature etc so be sure your Mom knows most of us are kept mostly comfortable, most of the time. (Lot of 'mosts' in there. ) If your Mom is worried about the pain, tell her the main is not nearly what one expects..... for most of us. Everyone is different and there is no way to say absolutely sure about anything to do with OHS but it is a hugely successful surgery.

Best wishes to your Mom and you.

 

[Chris M]

Hi Kelly! Do please tell your Mom that I was in her shoes not so long ago - I'm 56 and had a mechanical mitral valve implanted in May this year. I had a nine month wait for surgery and wasted much of that time almost making myself ill with anxiety and fear, so I do relate to her feelings! Closer to the time, however I did find a peaceful, accepting state and went into hospital in a much calmer frame of mind. It is quite normal to feel some apprehension as one prepares for the event but I would suggest she tries to keep positive and busy to minimise the worst of these feelings.

As for the surgery itself, it's not exactly a fun experience but it was not quite as bad as I thought it might be. When the deed was done I felt a great sense of relief in getting it over and done with! A few months later and I am beginning to feel rather more normal and getting stuck into physical activities and cardiac workouts that I could never have done before with my malfunctioning native valve. I feel like I have a new lease on life and am so happy my problem was "fixable".

I think it helps to hear from others who have been through this so I hope your Mom will read this thread and see that many of us have faced the exact same thing and have got through it in one piece. I can also tell you that the human body has an absolutely remarkable capacity to heal and recover from something like this!

I'm sure your Mom will be fine - surgeons, procedures and hospitals are so good these days that, at her age, there is unlikely to be any serious problems. She will need some time to recuperate afterwards but she will soon be back on her feet and feeling as good as new... I promise!

Hope this helps and best of luck to you all. :thumbup:

 

[piglet]

I found this article on line and thought it might be a helpful one for you to read. It has lots of info on things to do to help alieviate fears associated with facing surgery. Hope it helps.

http://surgery.about.com/od/ingandsurgery/ss/SurgeryAnxiety.htm

 

[ChicagoMammy]

It is a scary process - no doubt about it. I remember the few days before the surgery were surreal, but most come through strong and healthier than before. It's tough but the other side is so much better. I was 28 with a 6 month old baby when I had my mitral replaced. She was asleep when I said goodbye to her that morning. In the hospital I freaked out that I hadn't woken her up to say goodbye. I was worried I'd never see her again. Well here we are and she's in Kindergarten and I get to say hello and goodbye every morning and I'm better than before. It's all worth it but is hard from the "before side".

I hope she reads these encouraging posts and feels welcome to join us herself. Of course it's great you're here too. You will understand more what she is going through. She's lucky to have a supportive daughter like you. Good luck to you both.

 

[DanishQT]

Hi Kelly,

I'm 62 and just had my mitral valve replaced two months and one week ago today. I'm still in recovery and doing really well. I know how scared you're mom is, even though people go through this surgery every day and have no problems, there's that little niggling doubt in the back of our minds that says "what about me?" Tell her to focus on the 98% that fly through the operation. I can guarantee she will feel better almost immediately. I noticed the difference in my energy level right away. They get you up and walking the very next day - Ugh! Your mom will be amazed at how quickly she will feel better. She won't heal over night. MVR is a big deal. My surgeon told me it takes at least three months for the breast bone to heal, and your body will take even longer. I'm not trying to scare you, just trying to prepare you. It takes time. I'm still healing and have my good days and my not so good days.

I would suggest your mom go to cardiac rehab a month or so after surgery. It's a little tough at first, but the nurses start you out slowly and add more time and excersize as you go along. It helps build strength and confidence.

I have several Mended Hearts friends who are very supportive. If you're interested in their support go to www.mendedhearts.org or call 888.heart99. Your mom may be going to a hospital where they have a chapter and visiting program. Even if they don't go to her hospital, they do have people who will reach out to you both. They have been there and done that.

Give your mom a big hug. She's scared and she needs it. She will be so much better once she's on the other side of the surgery.

Karen

 

[catwoman]

I am relatively comfortable with the situation and have great trust and faith in her surgeons and cardio team. However, she is extremely scared and very very nervous about the entire thing. I have tried consoling her but she is very scared and much of the mind set 'you don't know what it's like, you're not in my shoes'.

Kelly:

That's why a support group is so good. We've been there, done that -- in our own shoes, in other's shoes.
And not all heart surgery is the same. Bypass surgery, which is probably more common than valve jobs, is not the same as valve surgery.
However, some people are not comfortable in a support group. If this is the case with your mom, please do encourage her to just lurk. If she's not comfortable with that, you can do the lurking and asking for her.
I had MV replacement 8 years ago at nearly 53 and have a mechanical. My husband had MV repair 4 years ago at age 61.
His father had MV replacement in 1979 and again in 1989 (porcine, or pig, valves both times). My father-in-law passed away from cancer 9 years before my MVR.
Good luck to your mom.
BTW, my dad grew up in Cranston RI. His mother was born in the Providence area.

 

[kellyjlevy]

Thank you so much everyone!

I actually live in New York City and my mom is in RI - I have spent the past few months traveling up to her when I can. I am on the phone with her through out the day and have read to her every message. She is so touched by everyone's support and willingness to spend time and send such encouraging messages. It actually has touched her and made her feel much better than she thought. We have gotten in contact with Mended Hearts of RI and she has talked to a bunch of people there as well. She is surprised at the comfort she has received from this website and from Mended Hearts.

It's especially hard for her because she is a RN and knows all the possible outcomes going into a OHS. But she knows she has to push that sort of thinking aside and concentrate on the positive - which I will help her to do!

Again, thank you so much for everything. We are so grateful for everyone's responses.

Love,
Kelly and Laura

 

[Adrienne]

Hi Kelly. I had a mitral valve repair at the age of 60 in 2005. Naturally I was scared s...less, but everything went very well. Of course, I was extremely weak afterwards, but that I expected. I had no complications, although I realize that some people do have bumps in the road on the way to recovery. Three weeks after surgery, I basically felt great! Good luck to your mom.