Helen's Guestbook

Hi Helen Nice to see your journal note. You are doing amazingly well - great heart rate by-the-way. I haven\'t been able to get anywhere near that yet. That new pup must be keeping you fit. Take care. Cheryl, Ontario

Helen, so great to hear from you. Congratulations on the heart rate...it is amazing the changes we notice since our surgeries. How is your heart rate at rest? I remember it was a little high, but you were not on any medications. Take care, Theresa Callanan

Hi Helen Nice to see you are continuing to heal well. How\'s the puppy? The new puppy in our family gained a pound so is now up to about 4 lbs and a force to deal with when he comes to visit. Apparently he just graduated from puppy school tonight - whatever that means. Weather there should be getting to where you can get out and enjoy the sun again. Wishing you well. Cheryl, Ontario

Hi Helen! Good to hear from you. I ended up going to East Carolina Heart Institute and had robotic mitral valve repair performed by Dr. Chitwood. I am doing so well. It\'s been less than 4 weeks, and I am almost completely recovered. It was a great experience. Glad to see you are doing well too. It does take a while to heal... Take Care, Amy Machtay

Hi Helen, I had mitral valve repair surgery on March 2 with a mimally invasive incision under my breast. I am recovering nicely but have a fast heart rate also. I go back to the cardiologist on friday. I was told with meds and time it would correct itself. What did they say for your fast heart rate?? Thanks, Theresa Callanan Howell NJ

Hi Helen I have a leaky mitral valve from the rheumatic fever I had as a kid. I didn\'t know it was so bad until I went into afib and was hospitalized for my nascar heart rate.I am talking with Dr. Milano at Duke for the surgery but he does\'t due minimally invasive. I sent my records to Chitwood at ECU who does robotic mimv surgery. Any advice about surgeons at Duke? Sounds from your experience that it is a long recovery period? Hope the rate of recovery increases as time goes on. Marion

Hi Helen Are you having a better day than on the 7th? Your frustration mirrors my own at times. Your mind can go a mile a minute but my body belongs to someone else. It\'s almost like being on the outside looking in and saying, for gosh sakes woman, get going and getting an answer of yeah, yeah - later. You said your husband hobbies at blacksmithing - like putting on shoes for horses type thing or making iron railings etc? Working with copper wire is interesting. Copper is a beautiful metal and nice to work with as well. How neat that you can make yourself a token of your efforts. Good luck continuing with your walking and exercise. I\'m not able to lift any weights yet and often I even find my purse heavy. My husband just picked it up and commented on how heavy it was but I had my video camera in it. Arrgh. Keep in touch. Cheryl, Ontario

Hi Helen I was going to write and ask how you were doing as I hadn\'t seen an update for a bit. I get feeling frustrated at times myself and like you, I sometimes walk like I have the weight of the world on my chest. My heart rate is low as opposed to yours which sounds high and I\'m having palpitations and whatnot, much the same as I did before surgery so I\'m wearing a heart monitor for two weeks to see what is happening. I think I was expecting to feel terrific after surgery and I honestly can\'t brag about that yet. We\'ll see. My early recovery seemed to come in leaps and bounds and then I came to a standstill I think. Everyone around me keeps telling me to sit, not do this and that, you name it and while that is very nice, it doesn\'t make me feel better inside. I\'m feeling, I dunno, delicate? It sucks anyway. I try to ignore the heaviness in my chest but then I think I\'ll wait until this monitor comes off and we see. I know what anxiety feels like and it\'s not that. Are you able to get out for some long walks with the new puppy? I\'m glad to see you picked up the wrist pulse monitor. I use mine at rehab and its the same readings that the technician gets. I think normal heart rates are between 80-100 but I hope someone out there will read this and correct me if they know different. Perhaps 80-100 is where I\'m supposed to be. My exercise rate is tailored to my ability and so right now I\'m supposed to keep my pulse between 94-104 but I can go as high as 110. I got up to 120 and the nurse freaked. I don\'t even break a sweat so I keep wanting to go faster but I\'m not supposed to. Not yet. On your follow-up, did you do another stress test? If you did, the doctor should give you your target heart rate and that would help you know if you are exercising at safe levels for you. Why don\'t you check into that? Really good to see your update. Try not to get discouraged - you have to keep plodding along. That\'s my advice but I\'ve needed a little dose of it myself lately too. Take care. Cheryl, Ontario

Hi Helen Our health system pays for everything except the drugs but our seniors get most of their drugs paid for. There is definitely no other system so we all have the same care. My husband is turning 65 in April so I'm anxious to drop him from our private health coverage. I have carried the private coverage at about $350/month because I've known someday I might need it and that only pays a portion of drugs, dental and semi-private hospital coverage, therapy etc. Doctors care, visits and surgery are all paid for by the system. The government caps what the doctors can make at any given time so many of our doctors left Canada for the States. We cannot see a specialist (which could take ages) without going through the family doctor and then you work you way up the tree and in particular, we don't have the ability to shop around too much without ticking someone off. Most heart patients get about 16-20 weeks rehab but my doctor runs a cardiac clinic where he has the rehab right on site. As his patient I can go weekly forever whereas my dad, who had a heart attack in the spring and has a different doctor, only had the usual offered and he didn't take it. We aren't so certain now that he can get it if he wants to start now. We have retired friends who live near Hilton Head (transplanted from NJ where he was a VP at the Federal Reserve in NY) and he has a great company plan so doesn't like Obama's health plan at all. Most Canadians wouldn't trade our health care system. Our homeless can get the same care I get - no problem but we all need to carry a government health card. Geeze - long story about nothing. What I was going to recommend was buying a sportwatch thing that monitors your pulse rate etc. and when you are exercising just check to be sure your pulse rate is within the recommended range. I bought a wrist monitor for about $70 at WalMart and it's dead on with the rehab clinic's measurements so I use it at home during the week to watch I'm not doing too much. Just a thought so you know you are reaching your potential without getting into a dangerous zone. You wear it on your wrist and just press your finder to a button and your pulse rate pops up. Simple. I am in Southern Ontario right on Lake Ontario, very near Toronto and while we are in a cold snap right now, we know we only have about two more months at most to go. This year we've hardly had any snow so we still have grass showing. We'll get snow yet though. Talk later. Cheryl

Hi Helen How's the new puppy? What a great attention grabber. My grandchildren just got a Yorkshire Terrier the week before Christmas and he's cute as all get out. Here's hoping you are continuing to progress well. When I look back it's hard to believe three months have already passed for me. Thank goodness. When will you start rehab? Hope you had a really great Christmas and wishing you all the best in the new year. Cheryl, Ontario

Hi Helen. I really enjoyed reading your story and journal. Thanks for sharing with us. Like you, I was diagnosed with a murmur as a teenager, and it is now time to fix a leaky valve. I'm nearby in Raleigh. My cardiologist is Dr. Emery. I'm scheduled for additional tests the first week of January before I see any surgeons. I've inquired about the robotic surgery at East Carolina, but it sounds like you were very pleased with Dr. Glower. Merry Christmas, and best wishes for a speedy recovery. Again, thanks for sharing. It really helps those of us who are still facing the surgery. Warmest Regards, Amy Machtay

Hi Helen Just checking to see how you are progressing. Are you walking yet? How is it that your surgeon took pictures of your valve? Hope you are coming along ok. Cheryl, Ontario

Hi Helen, I just got home on Wed. from surgery on the 20th. I definitely feel the same numb feeling, I can touch it but have no sensation of it. Life is good!! Joyce, Roswell, Ga.

Hey Helen Welcome home! Five days - wow you also are a trooper. So glad to hear everything went well and now here you are, home recovering. Happy Thanksgiving and hopefully someone is cooking a great welcome home meal for you. Glad you are back and looking forward to reading your updates. Cheryl, Ontario

Helen, WELLLLLCOMMME HOME!!!! And, CONGRATULATIONS!!!! If you have pictures of your valves, I'd love to see them. Any chance you can upload them in your "My Photos" section. Take it easy and enjoy being home for the holiday. Happy Thanksgiving! Adam

Hi Helen Wishing you a successful surgery and looking forward to hearing from you when it is over. When I hear you speak of cost it makes me happy I'm Canadian and bear no cost whatsoever for any medical treatment. That is such a great debate here as well. You should be concerned only about getting well and worry about the costs later. Take care Helen. You'll be just fine. Cheryl, Ontario

Helen, Great job adopting the "everything happens for a reason" approach. That is a very valuable outlook and understanding of this game we call life. I'm very sorry to hear about your dog. My thoughts and prayers are with you. Adam

Hi Helen Sorry to hear your surgery has been delayed. That certainly plays havoc on the nerves. Looking at how I'm feeling 5 weeks post-op - you'll be in good shape for Christmas! How unfortunate to have the worry of your ailing pet added to what you are already dealing with. Cheryl, Ontario

Hi Helen,
My surgery was a repair of the mitral valve by taking out a small piece of the leaflet and then piecing it back together. I also had an annulus ring sewn in at the base of the valve to hold it all tight. The doctor said he was 90% certain he could repair the valve so I was grateful for that. I had to make an alternative choice just in case, and I asked the doctor to make that decision for me. He chose a mechanical valve because I don't have any artery disease, I am under 65 and he felt I could handle the drug testing.

I didn't have to use a bedpan at all and neither did the lady beside me. Once the catheter was removed - 2 days after surgery - I was totally able to walk to the bathroom and be in there by myself. They get you up the day after your surgery and sit you on a chair Helen so they want you moving. You are given a pillow or blanket or something to hold to your chest for support and the nurses would rather you get up and go than use a pan. I too thought about all these little things and tried like crazy to be prepared for everything just in case.

I'm 12 days past surgery and still coughing because of this fluid in my lung but am working hard at getting rid of it.

Keep your spirts high. You'll be ok.
Cheryl,Ontario

Hi Helen
Something else I thought of was to make sure you buy a few larger cotton bras - larger around the midriff, don't worry about cup size. You will gain a lot of fluid and if you are more comfortable wearing a bra home, be sure to get at least one that will do up! I just bought one size larger and that seemed to work. I had dragged along body lotion and hand cream and honestly, never had the wherewithall to even open them up. I would have been too sore to bend over and cream my legs anyway. About the pain, by the third day I was calling the cut a sting so the pain soon starts to leave. You are young Helen and will sail through this. Don't think about tomorrow - instead try and focus on when it's over. That helped me. Keep strong. If there is anything you want to ask, just do so and I'll do my best to answer you honestly. Also, I started out on an external pacemaker for a few days before my heart finally picked up and took over so don't fret it if you find you too are getting a little battery powered help. Cheryl, Ontario

Hi Again Helen,
Guess you've read that I'm "done" and home safe and sound. I thought I'd send along a couple of ideas I had that you might find useful because for the first few days you'll be right out of it. I took pajamas with me instead of nightgowns because with the pj's I could at least have something on the bottom and didn't mind using the hospital gown for the top when needed, especially when the incision was still new. I think the pajamas were also more comfortable for my visitors because I was always presentable. Something else I took along with me was a package of flushable sanitary type wipes to be used in the bathroom. I spent the entire time there unable to shower because of carrying around protable monitors so at least after going to the washroom I was able to keep myself clean. I ended up wearing my hair in a ponytail to keep it out of my eyes and a high ponytail didn't interfere with my resting position. Raising my arms up to comb and elastic my hair was sometimes painful and difficult but at least I felt decent. The I-pod or MP3 player was a godsend and I kept it in a tiny pouch pinned to the waist of my gown and then pj's at night for safety. There were lots of times I was taken out for various tests and having my music with me helped with waiting. Just a couple of things that really helped me and thought I'd pass them on. Cheryl, Ontario

Hi Helen,
I'm going tomorrow so I'll let you know how it goes. I've kept myself really busy planning the stuff I take to the hospital and then what needs to be done at home for my return etc. I've been reading non-stop and am blowing through books like crazy. Have read an entire series of James Patterson in two weeks! And I work a fulltime job. I'm hoping for a repair but at least there is a Plan B - replacement with mechanical if repair fails. At least there is a Plan B. No one has any idea how I got this but in the end, it doesnt really matter. November seems like a long ways away. Get busy getting your bag together and just remember you know you are going to survive. It has to be the pain you are worrying about and hopefully that will be shortlived. I'll let you know. I'll keep a check on you once I get back home. You just keep positive and keep thinking about the future. There will be one. Cheryl, Ontario

Hey Helen,

Congrats on scheduling the surgery date. I know that is a big step in the process.

You are going to do great. November 10, 2009 will be the start of a new chapter in your life!

Keep on tickin!

Adam

P.S. Yes, a vampire would be quite annoyed if he/she were to bite into you. Thanks for the laugh! :)

Hi Helen,

I'm verrrrrry glad to hear you're confident with your surgeon and hospital. Sounds like you have taken a diligent approach to getting your mitral valve prolapse fixed.

Keep us updated!

Adam