New here, facing surgery Friday

[marky]

Wow what a great community!
I have lurked for about a week..and learned SO much!
Let's see.. first off I am a 43 yo woman and mother of 4. I homeschool 2 of them my 7 and 9 year old. (and teach at a local homeschool program)I have one in college and one on her own.
I have had miltral valve prolapse with mild regurgitation since I was a teen, and of course told it would never amount to anything. While pregnant with my 7 yo I was also diagnosed with Prolong QT which is a deadly arhythmia oldest 2 also have this. 2 years ago I almost died from it and had a defibrillator implanted. I am just beginning to make friends with it

The begining of April I went for my routine 2 year echo and WHAT?? I now had severe regurgitation and needed to see a surgeon!

So I have researched and talked to many in the past few weeks and decided to go with Dr. Gammie at the Univ. of MD. He specializes in Mitral valve repair, that is the only surgery he performs. Originally I was planning on minimally invasive, but after speaking with several women who underwent it the pain sounded too much for me.
I am unable to tolerate ANY narcotics..so pain is a concern for me.

I am about 4'11 and 105lbs.. and honestly I doubt my ribs could be separated enough and woudl probably need to be broken to perform the min. inv.

I have help for the first 10days (including surgery day).. then I am on my own with my kids..
Honestly do you thing at 10days post op I will be ok to be home alone with them and functioning?
Right now I am flowing through many of the emotions I have read expressed on this forum..
Fear mixed with anxiety denial anger and disbelief.
and of course 6 days in the hospital without shampooing my hair LOL

 

[OldManEmu]

Don't panic

Don't panic

It would be great if they can do a repair rather than a replacement. I was concerned about the pain presurgery but it isn't that bad, I would describe it as sore rather than very painful. Other than when I first woke in ICU I wasn't offered or given any painkillers except paracetamol tablets so it isn't that painful unless you do something that pulls on your chest. You should be able to have a shower after 3 days and you can wash your hair, however getting your hands up to head height can make it a little painful. I see your biggest problem is going to be looking after the 2 young children, I would say you will need help for the first 3-4 weeks, I wasn't permitted to drive until 6 weeks post surgery.

 

[Mary]

Marky,
If your children are able to fend for themselves, and are responsible, you might be able to get by with only them after the first few days at home. However, someone will have to get the meal situation in hand so that you aren't trying to lift or cook anything. Basically you're only going to be able to supervise them, and little else.

Regarding shampooing your hair,I washed mine in the shower on the second day, and I was able to blow dry it. I took along a light weight travel hair dryer so it was easy to lift.

Good luck and keep us informed about your recovery. We're here if you need us.
Mary

 

[Mary]

I just added your surgery to the calendar, so we'll all be thinking of you Friday.

 

[marky]

Thank You..

Thank You..

I do realize that everyone heals at a different rate..but the input on this board is priceless..

I was also wondering if anyone had experience with the minimally invaseve proceedure done through the right side ribs?
Thanks again

 

[Mary]

I do realize that everyone heals at a different rate..but the input on this board is priceless..

I was also wondering if anyone had experience with the minimally invaseve proceedure done through the right side ribs?
Thanks again

Here's one thread you can read:
http://www.valvereplacement.com/forums/showthread.php?t=15069&highlight=minimally+invasive+replacement

If you want to read more, enter the words, minimally invasive replacement in the search feature at the top of the screen, and it will bring up more threads on the subject.

 

[Karlynn]

Welcome Marky! Is your surgeon prepared to do a replacement if he gets in there and the repair can't be done? And if so, have you chosen a valve type? The reason I ask this is that not all people get the repairs the surgeon goes in for. You don't want him repairing it "at all costs" if it mean you have to have surgery in another few years, or if you aren't able to get back to full functioning after the surgery.

When I had my valve replacement done, they said they would attempt to repair it, but the valve was almost gone when they got in there and took a look. So they replaced it with a St. Jude.

My kids were a few years younger than your two youngest. As Mary said, you will want to have meals taken care of and things like laundry and cleaning. To attempt to too much in the first month (especially the first 2 weeks) could set your recover back. Try to have someone as back up so that you don't have to keep pushing on doing things that are causing your recovery to decline. This is a time where trying to be Super Mom will get you nowhere but back into the hospital. There is no way to push recovery successfully. My dr. told to do no upper body exercise for a month. One day I sat and folded the laundry my husband had washed and dried. The next day I could hardly get out of bed my chest hurt so much. It hadn't occured to me that laundry folding was exercise - but it sure was!

Best wishes!

 

[bvdr]

Hi Marky,
Welcome to this board. I had the heartport procedure through my right rib cage. I have never had my sternum cut so I can't really firsthandedly compare the two. I was allowed to drive after two weeks and had a strict lifting restriction for about the same amount of time. I came out of surgery with a rib wired back into place so I know that ribs and the right lung can take quite a beating. Initially, I also had severe muscle spasms in my rib cage but after a week or so that cleared up. Regardless of the procedure you have please expect to feel very weak and short of breath for a while after surgery. Walking around the block may feel like a real accomplishment the first few weeks. Staying by yourself 9 days post-op is not a good idea. You might be able to get through it but almost everyone has some glitch somewhere during early recovery and MUST have time devoted to rest and healing. After surgery it may be hard to concentrate for a while and decision making may seen difficult. I really think you need someone else with you for a longer period of time. Hopefully you will have a super quick recovery but it is much better to be prepared. You will be in my prayers both for a successful surgery and for finding the right arrangements for your situation.

 

[Karen]

I haven't had a sternotomy and I haven't had a minimally invasive surgery either. But I did have a coarctation repair through the ribs. When my cardiologist told me that the surgery I look forward to would be a sternotomy, he predicted that it would actually heal faster and be less painful than my coarctation surgery. My husband's aunt has had four valve replacement surgeries. Again, none of these were the minimally invasive procedures. But two of her surgeries were through the ribs and for two of them, she had her sternum cut. She agreed that the sternotomy surgeries were much less painful. So there must be factors other than initial pain issues to swing you toward the minimally invasive procedure.

Best wishes on Friday!
Karen

 

[marky]

Welcome Marky! Is your surgeon prepared to do a replacement if he gets in there and the repair can't be done? And if so, have you chosen a valve type? The reason I ask this is that not all people get the repairs the surgeon goes in for. You don't want him repairing it "at all costs" if it mean you have to have surgery in another few years, or if you aren't able to get back to full functioning after the surgery.


Yes I am on the mechanical as a back up.. I wanted tissue but they discouraged against it, claiming that it would not last as long.
the surgeon is confident it can be repaired, I sure hope he finds no surprises once he is in there!
Thanks for the response and information

 

[Marguerite53]

Hi Marky! Welcome!

This is day 14 post surgery for me. My children are all grown and have flown back to their respective colleges. Tonight is my first night being responsible for dinner for me and my husband. I cannot drive for another 2 weeks, minimum, and have stocked up on soups and frozen stuff. I think I will be fine, although it's amazing how much "stress" coordinating all the pieces of a meal can bring about! I'm still on abit of Vicodin (1/2 plus a tylenol) so I know that slows me down.

Up until today, we have been eating food which has been brought by friends, or started up by friends during the day. Without their help, it would be expensive carry-out or grilled cheese every night as my husband has a very demanding job which brings him home at different, late, times each day.

If I were you, I would try to stretch that help out another 4 days or so. Isn't it possible for your homeschool network to do a "special" project on heart health, or community support, or cooking which would allow you that extra few days of help? It would also incorporate a climate of learning that could saturate your children's natural propensity to learn and they would be among friends.........just a thought.

Your kids won't care if the house is spotless, or if they get grilled cheese every night. They will see that you need help and I know they will be wonderful. You will be sleeping alot, and they will not, so I don't know how you can keep them busy and safe while you get your much needed rest. Perhaps someone could come and get them every afternoon for 3 hours so that you can have some quiet. You'll need to use that to sleep, though, not tidy up or do chores.

Best of luck to you! Glad that you found us and hope that we can be of help to you in these few days.....

Marguerite

 

[Superbob]

Marky,

Just wanted to add my best wishes for a successful surgery. I agree that if you could work out a rotating arrangement with your home-schooling friends so that they took turns helping with your children and meals for a while, that would be a big plus. My experience is that home-schoolers are great in pulling together. You are going to need your rest. Will keep you in my prayers.

Bob

 

[PJmomrunner]

I'm keeping my fingers crossed for a repair for you. Either way--repair or replace--I'm sure you'll do fine!

Wishing you all the best,

 

[tobagotwo]

At ten days, you shouldn't be lifting a gallon of milk (8 lbs). You shouldn't pick things up off the floor. You can't drive safely. You can experience severe pain even opening or closing a car door. You can't hold a baby safely. You can't open tight jar lids. Lifting a frying pan can hurt dramatically, as can washing dishes. You can't sweep or rake. You can't conduct an orchestra (or anything else that has your hands in the air). Brushing your hair may hurt. You shouldn't be on your feet for long unless you're walking. And lots, lots more.

You may be in the hospital as little as three days (I was), or longer than six.

I'll repeat what was well said above: if your kids are responsible and they can fend for themselves, you can probably do it - if you can keep yourself from doing chores as well. Performing home schooling during that time would be a very poor idea for your health, and would interfere with what you need to do to recover. Your kids need you healthy a year from now, and ten years from now. A few weeks for recovery is very small in th big picture.

You also need to ensure you have time to walk extensively several times a day and to rest with your feet up in between for several weeks. You will be recovering from heart surgery. This is not a surgery of convenience or a tonsillectomy. Recovery must be your primary function for at least four to six weeks. Exercise is a part of it, and taking the time to do it isn't discretionary.

The notoriously stingy insurance companies allow six to eight weeks off of a standard job for this type of surgery. The job of "Mom" tends to be more physically demanding and fully qualifies.

Best wishes,

 

[geebee]

Hi Marky, welcome.
First off, I hope you get your repair but be prepared for a replacement. Many surgeons who are convinced they can repair find things different when they get in. I had that happen and ended up ticking. Glad you have an alternative picked out already.
Sorry to mess up your plans but 10 days is not long enough. You need help for at least 2 weeks AFTER you are home. Trying to recover and take care of two children will be way too much for you to handle. Please spend tomorrow trying to find others who can help you. I am sure a few days does not sound like much now but it really will be a big deal after surgery.
If you have time, lay in a supply of easily prepared meals. Buy disposable plates, cups and flatware.
Spend some time explaining things to your children and let them know they will be able to help you and you will not be able to help them for awhile. They are old enough to enjoy playing grownup for a few weeks. However, they will still need an adult around to take care of things, one who is not recovering from OHS.
Other than that, you sound very prepared. Keep your upbeat attitude and you will be fine.
Godspeed and see you on the other side of the mountain.

 

[aussiemember]

Hi there!!

Hi there!!

Hi Marky,

I am in a very similiar situation to you - 37 with MVP with moderate/severe regurgitation. Have had mild regurgitation since a teenager and like you strolled casually in February into my yearly check up with no expectation at all that I would hear that I was facing surgery in the next couple of years. Amazing how this benign condition is not so benign.....

Anyway, just wanted to say I will be thinking of you and praying for you on Friday - hope the surgery goes smoothly and that you are able to get a repair. God speed!! Jeanne.

 

[distances]

Welcome!

Welcome!

I also don't think being alone after just 9 or 10 days is a good idea. Maybe after 3 weeks or so if all goes well. I think I was left by myself during the day only after the first couple weeks. If you have a good support group, this is the time to call upon them. They really do want to help you any way they can. Of course, we all heal at different rates, but the last thing you want to do is push yourself too hard after surgery and end up back in the hospital with complications. I think slow and steady is the way to go. My surgeon warned me about this before surgery, and I think he was absolutely right.

I had minimally-invasive right side surgery, with broken rib for mitral valve repair due to regurg. and prolapse. My surgeon told me the sternum entrance is more painful immediately after surgery, but heals more rapidly. Minimally-invasive right side entrance is less painful immediately after surgery, but takes longer to heal. I'm not certain pain is the right word, I didn't really feel a lot of pain, more "discomfort" I guess you can say. My entire right side has taken quite a long time to heal, and I was unable to lift any weight at all for quite some time and unable to lift my right arm over my head. Over time, tho it's just slowly and gradually goteen stronger. I wouldn't be too concerned about the pain level. You'll do fine either way. We'll be praying for you on Friday.

 

[marky]

about your minimally invasive..

about your minimally invasive..

Distance...

that was an option to me, entrance through my right ribcage.. I am very uncertain about it though.
My surgeons PA told me that it is actually more painful via rib and many woman still have re-occuring right breast pain 1year post op.

I told her that I needed to chose the proceedure that would allow me to function the quickest since I have no family close by and will be needing to be on my own quickly.

That is why I chose the sternotomy.. she said that there are less nerve endings.. I can't take narcotics for pain..so it really limits my choice of pain management.
Can I ask when you had your proceedure?
thanks
marky

 

[Doug]

Marky,
I haven't had my surgery yet so I can't answer any of your questions, but I did want to extend a warm welcome. VR.com is a fantastic place to get real life experience answers, and everyone is happy to help. Will be keeping you in our thoughts & prayers.

Best wishes,
Doug

 

[Phyllis]

Marky, Just wanted to chime in and wish you the best. I hope you get the repair and all goes well. I also hope someone can post for you and let us know how you are doing. Best Wishes.