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More Myectomy Recovery ?'s

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  • Ronnie
    replied
    Re: More Myectomy Recovery ?'s

    Hopefully, i can provide you w/reassurence & some answers to your questions, regarding the upcoming Myectomy. I had a Myectomy @ Mayo, this past July. I live in Michigan, necessitating plane travel. We (my Husband & Myself) flew into Minneapolis & took the "Rochester Shuttle" (about 1 1/2 hour ride) to Rochester. My husband rented a provate Limo to transport us back to the Airport, when I returned home. Definitely you will need a wheelchair at the Airport. The Flight home was no problem, but I could not have managed it alone. Plan for someone to fly home with your husband. My Husband returned home, 3 days after my Surgery & then came back to take me home the day of my release. I had Zero problem spending time in the Hospital alone. The Entire Staff at St. Mary's s WONDERFUL.
    My operation took 6 hours, my Husband said they gave him periodic updates. Most proceedures go more quickly, but I had some problems coming off the "Heart Lung Machine". My Husband was able to see me once I was in the CCU. I spent 24 Hours in CCU (more problems) & then went to Step Down.
    I returned home from Mayo, on a Saturday & my Husband returned to work on Monday. I was fine at home, by myself. I couldn't prepare Dinner, but was capable of making Breakfast & Lunch (easy stuff).
    We have a First Floor Bedroom, but I was most comfortable sleeping Sitting Up (propped of course) on the couch
    Hope this helps with your planning
    Any more ? Just Ask
    GOOD LUCK

    Leave a comment:


  • Pam Alexson
    replied
    Re: More Myectomy Recovery ?'s

    Hi Sandy , I spoke with Felix by Phone? You can call me if you wish if you don't still have my # and wish to have it just send a message. I am glad Doug is going to call , he is a great guy and would be good at telling Felix the male version of surgery and recovery . My surgery was in Oct. , my sisters hubby 4 weeks ago . At Nemc ,they are great and the waiting rooms at the cardiac thoracic ICU are comfy enough , you'll be in a different one while he is having surgery and where Dr. R will come and talk to you after . When he is in unit the there is a phone in the hall to call into unit and speak to his nurse, ask when you call her. My 2 recent experiences for me and my b-i-l were similar. Insurgery at 8am out around 2pm first visit was very brief as we the patients are unresponsive at this time and need a lot of care. About 4-6pm awakening, possibly the vent tube is out and then able to speak. If the tube is in longer don't panic everyone is different mine was in til 3am. My visitors went home or to the hotel after the second visit that 1st day. My sister did about the same for her hubby. Nurse was able to call her on cell phone. Day two she went in at 1pm . In aboutthe afternoon of second day he will probably go to Proger 5 ;( step down cardiac unit), we all go there and stay til d/c. My sis got more and more comfy and went in by10 or11am each day and pretty much stayed all day. He was there 5 days mine was7 (due to some problems) I did not have visitors all day if you can dismiss the frequent visits from medical personnel doing all the neccesaties to me and I did fine . My family would come up in the pm for about 1-2 hours. I liked the rest as you get very tired and I don't like to sleep when people visit. We are all different. When you and Felix go in on the 17th and meet with all and have all the pre-op work ,take a note pad,jot down any last minute questions that may pop up . Celeste or Noreen will give you both the lay of the land and all expectations , details of total procedure etc, they are very thorough. They are R.N.'s and work closely with Dr. Rastigar. In the OR the staff is very comforting prior to the surgery. I felt very cared for and less anxious because of it. After Felix's arrival back at home someone close by for a week is good . Depending on his pain level and comfort will tell if and what Felix can do . Someone getting your food prepped is not too much to expect for the first week or so. The appetite is not too good early on and it is a matter of , if you have to do it yourself you'd prefer to skip it or sleep instead . Make sure he drinks plenty of fluid in those post days even if he doesn't feel like it ... flush, flush that system and keep well hydrated.In all honesty you can't manage too much extranious things in the first 2 weeks . Too tired and the pain . It gets better everyday and by3-4 weeks you feel your back with the living. Both my B-I-L and I agree it's just you have to do the time(about 8 weeks), Doug will say the same and there is no way around it. I hope this has helped , call if you wish I'll be glad to help. Best Wishes Pam

    Leave a comment:


  • Lisa Salberg
    replied
    Re: More Myectomy Recovery ?'s

    I will ask those post myectomy to comment on this. I would also suggest you ask the staff at NEMC for a "blow by blow" as to what to expect , they will be happy to do everything to make you ALL feel comfortable.

    Be well!
    Lisa

    Leave a comment:


  • dughr
    replied
    Re: More Myectomy Recovery ?'s

    Hi Sandy,

    NEMC is wonderful about letting loved ones come in to see you. I woke up from the surgery on a ventilator with my best friend sitting next to me...not even a blood relative. As long as you are doing OK they are very flexible.

    I PM'ed Felix about chatting on the phone when I was out in California, and just got back. Perhaps I will try to call tonight and can fill you in on my experience at NEMC last July.

    Doug

    Leave a comment:


  • felixdacat
    replied
    Re: More Myectomy Recovery ?'s

    hi there,

    its felix's wife again.. We have made 4 sets of round trip tickets (one for
    my mom staying with the kids for the first part), and 3 nights hotel for
    myself (versus staying at relatives, not sure when I will get sleep). this
    leads to my next set of questions.

    felix will be having his surgery on the morning of the 18th. realistically
    when will be the first oppty for me to see him? I do have a friend
    that lives out in Groton coming in to keep me company for the day.
    I wonder how good NEMC is about letting you see your spouse ASAP.
    When felix had his UUUP last year I had to fight to see him in recovery while waiting for a room. I know he will be "out of it" but still...

    I travel back to atlanta on friday (2 days later) but on sat his brother
    is coming and staying until I get back. This makes me feel much better.

    also once released and back in atlanta, Felix will probably stay downstairs in the recliner versus the bed. I would assume this is more comfortable?
    Will he be up to preparing simple meals if he has any appetite, such
    as toast, sandwiches, etc; Do I need friends to look in on him while
    I am at work those first few days he is home?


    less than 2 weeks until surgery. Its very hard not to be anxious here.

    sandy

    Leave a comment:


  • MartinKennedy
    replied
    Re: More Myectomy Recovery ?'s

    What hospital will you folks be at. As Doug said, members are here and helping each other would be a great way to make this list come alive.

    I was at Mass General, where will you folks be?

    Leave a comment:


  • felixdacat
    replied
    Re: More Myectomy Recovery ?'s

    felix's wife again.. I think we are sticking with boston on feb 18th. I will
    stay until the 20th at night. we have relatives in boston that can help
    with felix if needed while he is still in the hospital. I am then flying
    back up to help him get home. (this way always my intention). friends
    will take the kids for those days.

    thanks for all your inputs here.. sounds like recovery is in a big range.
    I will hopefully find an internet connection while we are up there and
    will do a diary type update, so that others will hear from our experience.

    sandy

    Leave a comment:


  • Linda
    replied
    Re: More Myectomy Recovery ?'s

    Doug, You are one of many who are anxious and willing to help others out. Too often, we're not even aware of what is available to us. People of Rochester were so generous and helpful to us while we were at Mayo. We had a total stranger drive us to the airport on NY's Day when our pre-scheduled cab showed up with someone else in it and told us he couldn't take both my son and I, only one. We had at least 4 people in the waiting room stand up and say they had a car and were ready to take us. We all repay these kindnesses to the next person, can't always return the favor to the original giver. Felix, don't be afraid to ask. You might get a few "no's", but you'll never get a "yes" if you don't ask. Linda

    Leave a comment:


  • dughr
    replied
    Re: More Myectomy Recovery ?'s

    Hi,

    I have been away for awhile recovering from my myectomy. I am a little in the dark as to what is going on here, but after reading Lisa's response I have to say I am so anxious to help out here in Boston. I did not gleen you were having a surgery here from the post. I and friends of mine here would be honored to help with transport or anything anyone needs. I know how much this takes because I did it a few months ago. Please, Please, don't hesitate to contact me so we can help. I needed help, and when I asked it was there for me. I would be grateful to return this favor and help you to make this time easier. I would not hesitate to help, please let me know how I can. You can post, or contact me privately. Best of luck.
    Doug

    Leave a comment:


  • Linda
    replied
    Re: More Myectomy Recovery ?'s

    Felix and Sandy, I hope things come together soon for your plans with child care. It's a tough juggling act. Felix, you really don't know how you will feel, so it's best if you can plan for the difficult and hope for the best. I would not like to see you traveling alone. When you make your airline reservations, just tell them you need wheelchair assistance. Use it whether you think you need it or not. You don't know when you may feel a sudden exhaustion. You won't have to worry about connections or finding your way around a strange airport either. It's nice to have someone with you to listen to the instructions and help you get answers to questions you may not have the energy to ask or remember in the early days after such a major surgery. Maybe someone can be with you and Sandy can be with the little ones after a few days. As for riding in a car, the back seat doesn't present the problem of airbags so is safer till you heal more. The pillow will take pressure from the seatbelt. You will get instructions from the nurses before you are discharged, but travel tips are some things you can plan ahead for. Take loose, comfortable clothing and shoes. You've heard good info from many already, and most have made remarkably quick recoveries. I've been impressed. Our son was 16 and recovery was not quite so speedy and uncomplicated. I was glad to have had the assistance in the airport and a few extra days at the Ronald McDonald House before even trying to fly home. I'm not trying to sound pessimistic, but rather to help you consider options and be ready to switch gears as needed. Don't worry if you need an extra day or so before you feel up to traveling and do remember Lynn's advice about the walking. It's important to keep good blood flow in the legs. You've got busy times ahead of you, getting everything ready, esp with the little ones. I wish you the best and a speedy and uncomplicated recovery. We'll be watching for updates. Linda

    Leave a comment:


  • Shayne
    replied
    Re: More Myectomy Recovery ?'s

    I was in the hospital for 3 days after my myectomy. I rode home in a van. (2 hours) I remember being sore but it wasn't unbearable. I'm sure the long car ride would be more difficult than a plane ride.

    I didn't think it was all that bad. After about a week, I was feeling much better. I didn't have the scoped procedure either, they cracked me open.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: More Myectomy Recovery ?'s

    Just a thought... We have some HCMA members that live in the Boston area...someone may volunteer to help you to the airport?
    Just a thought??
    Lisa

    Leave a comment:


  • LynnS
    replied
    Re: More Myectomy Recovery ?'s

    Hi Felix and Sandy,

    I had my myectomy at Cleveland Clinic in August 2002 and the clinic is about 4.5 hours from my home. When driving home we needed to stop every hour for me to get out and walk 10 minutes - this was instructed to me as part of my release from the hospital. It extended our drive home but of course made the difference on keeping the blood moving and encouraging the 'kinks' from surgery to work out.

    As for what to do about the seat belt, a suggestion was given to me by a fellow-HCMA member to ue a small pillow. Sometimes the hospital will give you a 'splint' pillow after surgery or you might use a small thin one you bring or even a folded towel. Putting this between me and the belt over my chest took care of the belt rubbing or putting pressure on the incision site. Hope that is a viable suggestion for you.

    While I did not have the exact set of logistics that you are potentially facing I can relate somewhat and do think that if you can have a 'stand in' available once Sandy leaves it would be best. Often it's nice to have someone else around to help you think of questions and listen with you to the answers. Also, with traveling you can't bet that you're not going to have a moment when you just don't feel terrific; all the way around it was my experience that it is nice to have someone with you who understands the situation fully and can be an advocate for you.

    Let me know if I can answer any other specific questions!
    All the best,
    L

    Leave a comment:


  • Reenie
    replied
    Re: More Myectomy Recovery ?'s

    Sandy, I'm sure that someone with personal experience with this will post soon. My husband hasn't had a myectomy so I can't say what to expect. Good luck.

    Reenie

    Leave a comment:


  • felixdacat
    replied
    Re: More Myectomy Recovery ?'s

    I know that both felix and myself (his wife) have done searching and there
    are bits and pieces, but not all the information we are looking for.
    When he had the sleep apnea surgery, people who previously
    had the uppp had posted what it was like and recooperation etc. I have
    already talked to felix about us doing a diary of his experience, so
    that others can benefit.

    WE are trying to figure out a lot of things. thanks lisa for the info
    about me staying for just 2-3 days. (barring complications). We are
    still curious as to how to handle the flight back home and what needs
    to be done. Also how much could he tolerate a 1 1/2 hour car ride, if
    were where to use Mayo (no direct flight to rochester from here)
    ,or even once back in Atlanta a 45 min car ride, after a 3 hour plane ride! Would he be more comfortable in the back seat. what do we do about seat belts?
    I guess at the airport we arrange for a wheelchair on both ends of
    the trip. I really wish we did not have to travel for this, but Atlanta,
    with Emory and St Joes, two prominant heart hospitals, has no
    real experience with myectomys. I guess if you have regular heart
    disease though, this is the place to be


    sandy (felix's wife)

    Leave a comment:

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