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KSGAMMA's Photo KSGAMMA Posts: 2,445
3/9/14 6:39 P

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I go and see the Cardiac Rehab woman tomorrow morning for the first time. I've been redoing my aquafit exercise book I made so that I have a neat and clean copy to show her what exercise I'm doing. It's 36 pages with usually 2 different exercises on each page illustrated with stick figures. When I was done that, I printed out several pages of my SP exercise tracking reports and my nutrition tracking reports, a list of the forums I belong to and some samples of the types of forum topics there are. I want her to see that I do have some ideas about nutrition and exercise and how important it is to the heart. It's fun to do this stuff but I think I've undone all the good work my chiropractor has been doing for the tendonitis in my Rotator Cuff with all the keying and drawing I've been doing! Talk about sore!

Last week I learned I wasn't paying enough attention to my body these days now that I've been feeling so good - I could hardly make it up the stairs after spending 1.5 hrs without rest lugging bags of dirt and setting up my seedlings for the garden. Then, lesson learned this week - My husband suggested Fri. that my DGS (5 yrs) and I go grocery shopping on our own instead of waiting for him to go with me on Sat. He usually does all the lifting and packing and so on. Well, it was way too much for me. I must have looked terrible because while I was trying to wrestle the first bag out of the cart and into my trunk, one of the young men who gathers up the carts in the parking lot came rushing over and grabbed the bag from me and told me to go sit down, that he'd finish loading for me and take my cart back. I was very surprised but also very grateful. If I get in a bad way, I tend to be really unaware of what's going on unfortunately. Fortunately, my DGS was busy people watching and blissfully unaware there was a problem. We sat in the car for about 10 mins until I was steady enough to drive us home. Once there, I emptied the car a few items at a time instead of a bag or two at a time. My DH said I should have just left it in the car but I was sure it was just the right temp. to thaw anything frozen and freeze anything fresh - odd that but usually the case. I was still exhausted yesterday and lost an extra hour of sleep as well with the time change. Still not great today but definitely better. Good reminders I better learn from this time. It's great to feel so much better but I better remember the Dr's advice that this procedure was not a cure all. I'm not giving up - I'm still very optimistic that there will be a big improvement with time - I'm hopefully going to be a bit smarter about things though.



Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KSGAMMA's Photo KSGAMMA Posts: 2,445
3/6/14 3:14 P

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thanks Russell - and you are right! taxes are nothing to the other assurity in life, lol. I did get my cap fixed. The new one came in on Mon. so the dentist was able to fit me in late Tues rather than the scheduled Thurs. I could have waited but she saved me a lot of discomfort. While in there she says "so, when are going to do something about those bottom front teeth worn away from the acid reflux?" I said "what do you mean?" She started going on about knowing the costs of caps and such and the possibility of needing root canals in the process because the teeth are so worn down and why did I leave it so long, etc etc. A few years ago I practically begged her to cap the teeth and let me go on a payment plan to cover the costs and she told me then they were too far gone to do anything. I've been letting that stew away in my mind ever since. Who wants ugly front teeth! She said in several months we should take impressions and send them to the lab to see if they can come up with a cap that will work for them due to the condition of them. I said - why wait and booked an appt. for later this month. I can see a difference every week and do not want to wait. The money I get back from income tax because of last year's medical expenses will certainly help! I'll keep my fingers crossed that these otherwise healthy teeth do not need root canals because of the trimming they will need for the caps and that there is enough tooth left before the nerves for the same! As for my heart? I'm still only 24% but compared to before my procedure? I feel wonderful. I'm back to my aquafit exercises and have even added to them. I'm up to doing a full hour of the exercises and I've added 30 mins of jogging in the water - it's not a cake walk but no gasping for breath just healthy increase in breathing. We even had my 5-yr old grandson stay with us for 10 day while his mom and dad went on a vacation and I'll have him during the day tomorrow and all next week for the school break. I can't say enough about the procedure I had!!

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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RUSSELL_40's Photo RUSSELL_40 Posts: 16,826
3/3/14 3:15 A

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The only thing we can be sure of is death and taxes..lol. So taxes aren't that bad. emoticon

Hope you get your teeth repaired, and otherwise are feeling better. I have teeth problems from my diabetes, even though it is now under control. I had a little problem with A-fib for about a week, but otherwise feel great. Now I just have to save a little money to get teeth fixed.

Hope your heart is doing better post-surgery, and you are back to a normal lifestyle, just with more energy, an less problems.

"We can't solve our problems with the same thinking we used when we created them "

- Albert Einstein

“Whether you think you can, or you think you can't--you're right.”

- Henry Ford


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KSGAMMA's Photo KSGAMMA Posts: 2,445
3/1/14 5:39 P

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So, I worked a whole day and a whole evening on a draft of our Income Tax Returns. Thanks to acid reflux I had to spend a lot to repair my teeth and thanks to the leak in my heart I had to spend a lot on out-of-town expenses. I had more than 40 appointments/visits to hospitals, clinics, and/or labs during 2013 involving parking fees, and others to Sunnybrook Hospital in Toronto, also involving transportation, meals and accommodation. The Sunnybrook expenses also cross over and will have to be claimed in the 2014 Return as will some of the dental. I'm currently in the process of getting a new cap on a tooth and last night the temporary popped off so I'll have to try and get back into the dentist first thing Mon. It's very sensitive without the cap and I can't get it to stay in. But I digress, I have over $12,000 in medical expenses to claim for 2013! The computer program I used states that anything over $5000 is a great big red flag for an AUDIT. Geesh, last time I had a bad year and claimed $10,000 I was audited. It worked out that I actually got more back than I had originally put in for but one never knows what will happen.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KSGAMMA's Photo KSGAMMA Posts: 2,445
2/18/14 9:43 P

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Thanks for your messages Pacarolsue and, oh dear I've forgotten the SP moniker of the other person (that's the trouble with false names - hard to remember because they aren't common. Pacarolsue - I too hope when the time comes that you have excellent results. We've just had my 5 year old grandson for 10 days while my DD and SIL went away. What a joy he is - such a mild mannered kid but won't try any new foods and like so few! I had him to the school bus across town every morning and picked him up after school each day, took him to the pool at the Y on the weekends and we took him to his weekly swim lesson and weekly skating lesson - and got the computer going for him over and over. We played in the snow, went for walks, and had a great time. I was exhausted but pleasantly so. I'm still feeling great. I've been going to a painting conference in Toronto every spring for about 5 years and I went ahead and registered and paid for my classes. It's in April. I've signed up for 2 classes a day for 3 days and 1 on the final - many of them are 6 hrs in length. it's always fun and I always spend too much money but feels great to feel good enough to go. Thanks again for your concern.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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PACAROLSUE's Photo PACAROLSUE SparkPoints: (4,122)
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2/18/14 9:39 A

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KSGamma, I just read this entire thread and am glad the procedure went well for you and am amazed at your results. In 2008 I had quadruple bypass surgery and at that time, my leaky Aortic valve was not bad enough to repair/replace but they are watching it closely. Now the cardiologist told me my Mitral valve is also leaking. I get check-ups every 6 months and so far I am still OK, but I am aware that these valves may need attention in the future. I hope if it ever comes to that I will have great results like you did.

Wishing you the best.

KAIAHCOMP's Photo KAIAHCOMP SparkPoints: (23,882)
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1/25/14 7:38 P

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I've been thinking about you, too. So glad Russell did something about it. I remember after I first came home I could only walk to the end of my very short driveway with a walker before I panicked and needed to go back in the house. That was in 2007. At a fairly recent checkup they told me my heart had healed somewhat from that time. Good news indeed!

You can do it. Sounds like you have a good plan to get there.

Much luck to you! Sorry about the housework emoticon

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KSGAMMA's Photo KSGAMMA Posts: 2,445
1/25/14 2:26 P

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Russell - nice to hear from you. I am indeed feeling better - apart from some tummy troubles to do with changes in meds for my Crohn's Disease - but I haven't felt this energetic or had such a good sense of well-being in a couple of years! I discovered unfortunately that I can vacuum and change the sheets on the bed now without needing naps after each sheet and I'm no longer gasping for breath - guess I've got those jobs back now, lol. My DH was worried at the hospital when we were leaving that I was puffing a bit. I had just been bent over from the waist putting on my boots. I reminded him that I'm a 60 year old over weight woman and I'm bound to do some huffing and puffing after bending over like that. I haven't experienced any dizziness since the first few days home and that too is a first in a few years. Before the procedure I couldn't squat, stretch or reach out without getting dizzy and I couldn't do the vacuuming, bed changing, climbing stairs or toweling off after a shower without being seriously out of breath and gasping for air. My husband tells everyone he can't believe the changes in me and that he has a new wife - I feel like a new woman. My 5-yr old grandson thinks I'll be able to run with him this summer around the yard - I don't think so. I'm still doing walking stints in the house. The therapy people said no walking outside until I could do 10 mins. inside without having to stop. I'm not there yet. Besides, with the build up of ice out there under the snow (it looks like a blizzard right now out there) I'd be taking my life in my hands. Sidewalks this time of year are usually too treacherous and it's dangerous walking on the streets.

I am back to the Y in the therapy pool. I used to do 60 mins of aquafit exercises and 10 mins. of water jogging each session and tried to go Tues, Thurs, Sat and Sun. Today I did 40 mins of aquafit and 2 5-minutes stints of water jogging - none of it was done too energetically but I'm definitely feeling it. I started out earlier in the week with 20 mins, then 25 and then 30. Even though they said this wouldn't heal the damage done to my heart, as you said Russell, I believe that it can't help but get stronger being able to work easier. I had improved once from 28% to 55% after being in a study for 5 years at the hospital where I recently was a patient. When they implanted our pacemaker/defibrillators, they put an extra wire in some of our hearts to see if it would help heal it. I was lucky enough to get the extra wire and to improve as I said. That wire is still operational and I had it tested while in the hospital. It's functioning at 99% so I don't see why it won't help with the healing again. When I left the hospital, my function was only 24%. I was to have about 13 weeks of education and rehab when I got home but the place where it was offered has shut down. A cardiac nurse has recently joined SP and is one of my Canadian forums. When I mentioned not being able to take the recommended therapy, she has offered to make up a list of good websites and such where I can do some research and study on my own so I look forward to getting that from her. I've been monitoring my sodium intake, exercising, watching my fats, and taking my meds as prescribed for years but I'm sure there is a ton more I could be doing to make things better.

I hope everyone else is doing well. emoticon

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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RUSSELL_40's Photo RUSSELL_40 Posts: 16,826
1/25/14 1:11 P

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Hope you are doing better now that another 10 days has passed. I find that doing things to ease the function of my heart tends to show up during tests. Any damaged tissue won't get better for instance, but the can get stronger. Just as it slowly gets weaker over time, under stress, when that stress is alleviated, the heart can undo some damage. I started with wading in pool, and 10 minute walks to get my mail, and have worked up to 45-60 minute walks, bike rides,and even playing basketball for 30 minutes at a time.

Repair isn't possible if you are adding damage, but hopefully with these clips, your heart can at the very least, stay neutral, instead of getting worse. Do whatever exercise you can, and let us know what happens in the future.

"We can't solve our problems with the same thinking we used when we created them "

- Albert Einstein

“Whether you think you can, or you think you can't--you're right.”

- Henry Ford


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KSGAMMA's Photo KSGAMMA Posts: 2,445
1/15/14 10:04 P

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thanks Kaia...Hi everyone. My new computer is up and running - running over with e-mails from when I was away and when I was without the computer - 380 junk and over 200 messages from SparkPeople about people's comments in forums, SparkGoodies (thank-you so much for those), messages on my page (thank-you also for those), and new mail in SparkPeople. I'm not exactly up and running, lol, but I am walking about the house in 5-7 min. intervals. I was given a therapy book before leaving the hospital and tried to keep up with the schedule of walking but it only took one day of 6 5-min. walks for a total of 30 mins to prove I wasn't up to it! I spent a few days with nausea and dizziness and headaches. I'm going to continue to walk but do it at my pace. I haven't been able to walk much for the last 2 years after all. I have a follow-up appt with my nurse practitioner tomorrow and next week I hope to try going back to the pool. I may only float the first few times and chat with the friends I've missed from there, lol but I'll be out and doing something. They put 2 clips in - would that be 2 in the one mitral valve? This procedure I had won't cure my ailing heart but has made it easier for it to work and I feel better today than I have in over 2 years. I've been trying to catch up on all the posts - there are so many! I'm glad to hear from so many though and pleased most of you are doing quite well. Hang in there and keep up the good work.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KAIAHCOMP's Photo KAIAHCOMP SparkPoints: (23,882)
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1/11/14 11:52 P

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Wow! So good to know your procedure went well! Rest up, get well and I'm hoping with you that you will be feeling a lot better.

You can concentrate on your healthy life style now, and just see how far you can get, huh?

emoticon


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KSGAMMA's Photo KSGAMMA Posts: 2,445
1/11/14 9:35 P

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home 7PM TODAY. pROCEDURE WENT WELL. DH AND I NOTICE BIG IMPROVeMENT EVEN THOUGH CURRENT hEART FUNCTIO onlY 24% (-sorry didb't realize in caps but no computer today and no cell at hosp but trying to do this on cell now. very tired - long day but feeling great. have high hopes even though this won't fix previous damage only make it easier for heart to function. hope all is well. more later.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KAIAHCOMP's Photo KAIAHCOMP SparkPoints: (23,882)
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1/2/14 10:41 A

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Good Morning! Christmas has come and gone, the New Year has begun. I'm sending my best wishes for a happy, surgery behind you, healthy one!

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KSGAMMA's Photo KSGAMMA Posts: 2,445
12/19/13 7:03 P

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thanks! It's been quite a week. As I said, surgery cancelled. Then, we got home this morning and had to have our aging cat put down this afternoon! She was such a great friend and I will dearly miss her!

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KAIAHCOMP's Photo KAIAHCOMP SparkPoints: (23,882)
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12/19/13 8:56 A

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Arghhhhh! So sorry to hear about the delay and the expense. You've been on my mind remembering that yesterday was the planned surgery.

When I saw that you had written I thought, "Man that was fast! It must really be a fast recovery!" Let's hope January can work out smoothly.

Have a blessed Holiday.

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KSGAMMA's Photo KSGAMMA Posts: 2,445
12/18/13 10:28 P

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surgery cancelled after waiting in hospital bed from 9-4:30! rescheduling sometime in jan. costing g about $200 a day to be here. emoticon

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KSGAMMA's Photo KSGAMMA Posts: 2,445
12/11/13 9:38 P

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I had my pre-op at Sunnybrook Hospital today. Our appt was for 11 am. We were in interviews with a registered nurse, a pharmacist, and an anaesthesiologist for about 3 hours. Around 1:15 I took my glucose reading and was down below 4 and told them we'd have to have a break so I could get something to eat and why. The nurse went out and got me a sandwich, jello and juice. The jello and the juice were like nectar to someone who hasn't had anything but light juice and sugar-free jello in years, lol. In addition to the interviews, I also had to have an EKG, blood work and a chest x-ray. Even today at the pre-op they couldn't confirm the operation is definitely on for next Wed. They said that the afternoon prior to the surgery we will get a call between 1 and 3 telling us what time to report to the hospital the next day. By that time of that day, we will be in our car travelling to Toronto to get to our hotel for the night before the surgery in case I have to be at the hospital early the next day. I'll have to keep my cell phone out so I hear the call. In the meantime, I'm to stop a lot of my supplements and on the day before surgery stop some of my meds, as well as 5 days of showering with special antiseptic soap - just in case. It's hard to believe the foundation won't let them know until the last minute if they have the funding. It sure is nerve wracking from where I'm sitting! Once outside, we got away with only paying $24 to park at the hospital today. The attendant mistakenly thought my husband was a senior and charged him the senior's rate. Paul only has a year to go until he is classified as a senior but he wasn't going to argue, lol. It took almost 3 hrs to get there this morning due to traffic. We fared betting on the way home and were back in only 2 hrs. although we did have to drive through snow squalls in 3 different spots along the highways. We were both exhausted by the time we got home.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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KAIAHCOMP's Photo KAIAHCOMP SparkPoints: (23,882)
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12/10/13 3:48 P

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Nice to read Russel39s message to you. I add all my good wishes for a great outcome to his. I guess this is a one step at a time sort of thing. They want to be sure you show up for the pre-op then they will proceed finalizing the scheduling and give you some more information as to where and when you go for the procedure. They can't do it without you! emoticon

Roxy

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KSGAMMA's Photo KSGAMMA Posts: 2,445
12/10/13 12:43 P

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Russell - thanks so much. I have experienced an improvement from 18% to 50% and want that again! They say the valve repair won't fix my heart condition but if it does make it easier for the heart to work I believe there is an opportunity for it to improve again as it did before. I still don't have confirmation that the 18th is definitely on. We go to Toronto tomorrow for the pre-op - I was hoping to get confirmation first! We don't know where to report to or when on the 18th either. I'm not overly impressed with that part. I've set my hopes on it going forward and convinced I will have a great outcome. Like you, I've outlived the prediction 9 years ago of 6 mths to 6 yrs. I didn't know about that at the time though. Nor did I know about the leaky valve until I read it in a report. Had I not read it, who knows when I would have gotten the referral to have this procedure done.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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RUSSELL_40's Photo RUSSELL_40 Posts: 16,826
12/10/13 9:45 A

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Lin, just stopping back in to check on you. Hope everything goes well on Dec. 18th, and you see a big improvement in health.

I had my first ICD put in in 2004, and it lasted 6 years, since it never goes off. They said they would replace the battery, but with technology improving so rapidly, they just changed the old one, for an improved one in 2010. I'm guessing, Ill need a new one in a few years.

Also For 10 years, I had no idea I had a valve leak, or that my cardiologist had designs to replace mine. I went to get a consult with the guy who did my ICD replacement in 2010, and he started talking about my heart valve being replaced..lol. I freaked out, since this was the first I had heard of this problem. It had been a problem since I was first diagnosed in 2001 though. What really helped me was in early 2011, I went into the E.R. for a " tune-up ". I was a bit short of breath, and they gave me some nitro gel, and changed my Digoxin levels. I felt better within an hour, and had a talk with one of the nurses. I talked about my fear of valve surgery, and he told me that a friend of his had it done 15 years ago, and since has run a construction company, and is fine. It was a huge relief for me.

Hopefully, you can figure out a plan to help you get to a healthy weight, and improve the quality of your life with this procedure. I was very sick from 2001-2006, and just like you I was going from crisis to crisis, wondering if I would ever hear any good news. In fact , my cardiologist told me I had 6 months to live in 2002. I was on oxygen. The good news is that I lost 165 lbs, and have gotten off diabetes and cholesterol meds, as well as oxygen. I now walk 45 minutes 7 days a week. Plus my ejection % has gone from 16 % to 45 %. I think much of this is due to my relative youth ( almost 40 ), but small improvements in health, and ability to exercise more, will compound, and lead to big results. Getting your heart to work better will hopefully help with this, and allow for you to be more active. I look forward to updates on how it is working for you.

Will be praying for you next Wednesday! emoticon

"We can't solve our problems with the same thinking we used when we created them "

- Albert Einstein

“Whether you think you can, or you think you can't--you're right.”

- Henry Ford


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KSGAMMA's Photo KSGAMMA Posts: 2,445
12/7/13 8:08 P

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Roxy - we sound a lot alike. I too have a big stomach - always too big for rest of me (apple shaped) but since losing some weight it's more and more noticeable. I retain water in my gut as well. I was taking 1 Spironalactone every morning and a Furosimide every morning and at dinner and extra as needed but I had some trouble with my kidneys over the summer and I've been cut back to 1/2 Spir. and the 2 Furosimide. When I'm in heart failure I'm to up the Spir to a full again and take 3 Furosimide and if breathing is very laboured and quite swollen in limbs and stomach, take a Zaroxin (an extra strong water pill) It was the combination of Zaroxin frequently plus too many meds for both heart and diabetes when I'd lost 30 lbs. (so I was over medicated) that hurt my kidneys. I was in heart failure over and over and over and had to take about 1 Zaroxin a month for awhile instead of just 1 at beginning of heart failure and then hopefully not need for months again. I'm hoping when I have the Clip Procedure (a new innovative way to fix a leaking Mitral Valve in the heart without open heart surgery) on the 18th that I won't go into heart failure so often. Here today, I'm already back up 5 of the 10 lbs. of water I lost last week! When I get enough water built up around my heart, in my lungs and extremities, an alarm in my pacemaker/defibrillator (ICD)sounds off once a day in the evening indicating I'm in heart failure and I know I have to up my meds for a few days and afterwards go for blood tests to make sure my kidneys are ok. If it rings any other time of the day or more than once then I know there is something wrong with my (ICD) and I have 3 days to have it replaced before it quits or shocks me or both. Is your water retention also due to heart failure? When you are retaining water are you very short of breath, very tired, listless, etc. and do you have trouble laying flat in bed at night?

I sent all that detail off to the tech people as I outlined in my last message and they wrote back that it must be my computer - can't be their system - even though I copied messages from others saying they too were having difficulties. Tech people said different issues. Funny, though, my computer has been fine since then???

I found the resolution under Control Panels, Display, Adjust Resolution and it reads: 1600 x 900 (recommended). Does that affect things somehow?

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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12/7/13 6:04 P

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I'm sorry you didn't find screen resolution. Look for the word "display" meaning your monitor. Different operating systems can be confusing when they change things.

Oh how I hate water weight! I struggle with that all the time. I eat very little salt compared to my family, but still manage to accumulate the water. I'm taking a water pill (furosemide) and (spironolact). The doctor suggested that I take an extra water pill occasionally to keep ahead of it .I had ascites (a lot of water in my belly) and it is always a problem for me, my BIG stomach. It's much worse when my weight is up which is why I'm determined to get my weight back down to the level it was when I came out of the hospital.

So, like you, I can be up and down and have to be aware that I have this water retention tendency.

We'll just keep up the good work and be patient. It's the only way to go!

Cheers. By the way, you can call me Roxy.

Edited by: KAIAHCOMP at: 12/7/2013 (18:06)
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12/7/13 3:37 P

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Kia\h = I right clicked and selected Personalize but no Resolution to pick =- was all about screen savers and backgrounds.

I'm out of heart failure but have already gained but 5 of 10 lbs. of water I lost last week with the stronger medication I can't have often so probably just a matter of time.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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12/6/13 3:33 P

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Sorry to hear about your computer problems. This probably isn't very comforting I'm not experiencing any problems with the site. I hope you are able to track down the problem. What screen resolution are you using? Right click on your desktop, click personalized, and then screen resolution.

In addition, I hope you are feeling better...no congestive heart failure for now?



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12/6/13 1:03 P

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just a quickie while my computer lets me. Ever since they put the ads on the pages it's been screwy. I've cleaned cookies and cache, run antivirus, and defraged to no avail and no problems were found. I've joined a thread where others are having the same problems but 9 out of 10 times I can't track anything, can't get anywhere with the links to threads in e-mails, can't open stuff using the drop down menus above (sometimes the ads take over the entire page including covering the drop down menus), and can't open sparkpeople things using the web address - I've been pretty much cut off with the occasional peek in like now. if you too are having problems, please go to the Community Message Boards to the getting site tech help and look for the thread on these issues and put in your problems as well - right now I think the tech person who got an e-mail from me thinks it's just my computer and I've asked them to check out the community forum as well to see there are others. It's a problem with the site no longer being user-friendly or compatible to some of our computers for some reason. If I can't open things and join in discussions, there is no reason for me to be here so I hope they find an answer soon. I miss everyone.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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11/29/13 6:06 P

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... and when it rains, it pours ... tonight at 5:55 pm my alarm in my pacemaker/defibrillator went off signalling I'm in congestive heart failure, yet again, just as I'm starting to feel a little bit better with the chest infection. geesh!

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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11/28/13 7:49 P

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thanks for the well wishes - I'm awaiting a heart procedure in hospital 18 Dec. so this chest infection really has me knocked for a loop - I get out of breath just lifting myself out of a chair and walking across my living room. Actually I started this thread because of my nead for the valve repair.

About the peat moss and mulch - 2 entirely different uses. The peat moss must be dug into the soil. If not, it will simply blow away. It is used to hold moisture and to stop the soil from clumping if clay-like. Mulch you put on top of the soil. There are many kinds. I find the finest like cedar will clump and mold into chunks that are gross. The largest kind is quite hard and rough but is great for discouraging cats from using the garden as a litter box - they hurt their feet. The medium size is what I like. There are some hard rough pieces but also some smaller softer pieces. I like the brown coloured as it makes the garden look like it has nice dark soil. You can buy a really dark brown one which really does that but you have to watch out for the coloured ones - they will stain your hands and clothes so you have to be a bit aware of that when handling things in the garden. Having said that, I wouldn't go without my mulch - it doesn't eliminate weeds but really helps, helps keep moisture in my sandy soil and looks much nicer (browner) than my natural soil. Once you have mulch down it becomes quite a chore to add fresh soil to the garden and you have to brush it far back when planting something so that you don't lose it in the soil. I make sure that when I transplant or plant something that I make up rich soil of 3 in 1 mix soil plus extra mulch plus extra fertilizer so that I can add fresh soil around the new or transplanted plants.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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11/28/13 11:28 A

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About using straw...thanks for the warning. I'll use mulch although I don't like how prickly it is. I like peat moss better but haven't heard of anyone using it around here. We have beautiful soil but sometimes a great deal of rain concentrated in one or two storms. But it dries out fairly quickly when the sun comes out.

I'm so sorry to hear you are ill. I hope the antibiotics do their work quickly! But I'm glad to hear you are resting. Sometimes, even doing what I like, makes me more tired and taking a couple of hours for a nap or reading quietly helps.

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11/27/13 1:15 P

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I've never used straw but one of my sisters did one fall and in the spring it was full of mice and chipmonks and they'd eaten any bulbs or roots that had been planted and then covered with the straw. She said it was a nightmare to see them running all over the place when the straw was removed. I have mulch on my gardens mainly to hold in moisture because our soil is very sandy and even after a heavy rain, it's barely wet when you remove the top layer.

Perhaps you're right about spreading myself too thin but what is ME time really. Is it doing nothing or doing something you really like? I've always considered it the latter. If it is the first, then right now I'm getting tons and tons of it - I have a chest infection and I'm on antibiotics. I ache from head to toe, have a horrendous head ache and very heavy chest. I've got to clear this up before I go into the hospital to repair the Mitral Valve on 18 Dec.

Enjoy your Thanksgiving - ours was in early October - and try not to over indulge.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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11/25/13 12:33 P

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Thanks for the thoughts on gardening You may be right that I over fertilized. (If a little is good, more is better emoticon ) We did use bone meal, and did not use mulch of any kind. I like the idea of peat moss or possibly straw to use next year. And I've heard that mulch will protect the lower leaves from spores infecting them.

With your health problems, it seems to me that you are "over booked". I know it's hard but maybe you could find time for you - and for you to do nothing for part of the day. If you're like me you keep moving until finally at night you fall asleep at the computer. I've done that many times myself.

Have a happy Thanksgiving and join me and a few others who are going to be conscious of portion control on that fine day.

Edited by: KAIAHCOMP at: 11/25/2013 (12:34)
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11/24/13 9:05 P

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I was almost half way but I've been gaining for 3-4 weeks steadily stress eating worrying over the heart procedure I'm to have on the 18th of Dec.

As for your garden - I don't have much luck with veggie gardens but I have to wonder if you didn't overfertilized or whatever. It would force them too quickly and they'd burn out. Maybe try adding some more good dirt, and a compost and/or fertilizer. I also like to add [eat moss to keep the soil from clumping too hard. If you do, be sure to dig it in or it will blow away in the first real wind. If I'm planting bulbs or something the squirrels/skunks will go after, I use BloodMeal for my fertilizer. The animals don't seem to like it - it does stink but only up close.

thanks for the encouraging words - today, I've stuck to my diet - so far. Maybe if I sit on my hands? I've been sore as heck and weaker than usual the last couple of days. I think that there might be a hair on the left side of my part that may not hurt - may not. Today I woke up with a burning throat and was soon coughing with a deep bark. I'll have to call my Nurse Practitioner tomorrow to see if I can get in to see her this week to make sure it isn't pneumonia again. My DH is only home Mon. and late Tues. and on Wed. though as he's working Thurs-Fri and when I have a cough, I can't drive. I passed out once, fortunately while my DH was driving and not me and the neurologist says it will get more frequent as time goes by - what a treat! Guess I'll have to call a taxi for there and back.

I've been busy getting the Christmas gifts and I only have 1 more to wrap.

We had our DGS for the night Friday. I really wasn't up to it but I'd committed to it weeks ago when the kids bought concert tickets. We made ornaments out of play dough. My poor daughter, she likes her tree just so but her husband bought a small thin tree that will be perfect to showcase his handiwork on. He wants to give them to her on her Birthday on Fri. I've got 2 cookie racks full drying.

I'm all done in and will call it a night soon. I said that in another forum but fell asleep at the computer, lol.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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11/22/13 2:02 P

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I've never done any gardening to speak of until the last few years.

A little more about my vegetable gardens...I have rotated the plants each year between the four beds. Each year I add a great mix of worm compost, horse manure, percolite (I think that's what it's called and this year my daughter who was helping me, added a number of organic items that is supposed to fertilize the plants.

They started out well. I posted a picture on my Spark Page of the gardens in June. But it was all downhill from there. We had a very poor harvest this year. I'm pretty sure the plants were infected with alternian fungus

Another subject: I noticed today that you are halfway to your weight loss goal. Congratulations!



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11/20/13 8:24 P

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thanks Kaiacomp - I do love my gardens. What is causing your blight? Do raised beds for veggies have to be left fallow every couple of years like a farmer has to let his fields or is adding to the soil enough? I have some pics of my gardens posted in my SparkPage. You?

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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11/20/13 9:03 A

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Wow, let's hope for the 85% improvement after your surgery. I just read your profile and, like me, you have a great family to be there for!

I have four 3 x 6 raised beds where I plant fairly common vegetables. It's the first opportunity I've had for a garden now that we live in rural Illinois. I had great success the first year and have been struggling with blight ever since. I hope to get a handle on it this year.

I love the fact that you have so many flower beds. It must be beautiful.

I am at 55% Refraction Rate right now. I know how good that feels after being so much worse. I'm sending best wishes that the valve procedure will get you back there!



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11/19/13 7:52 P

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thanks Kaiachomp - I am optimistic that the clip in my mitral valve will be 85% (or more) successful in stopping the leak. Unfortunately both the Surgeon and the Cardiologist have warned that it won't heal my heart/solve my other heart issues. I got the flu in my heart they believe about 20 years ago and for the last 9 have been dealing with the damage it did to my heart over time. It caused Dilated Cardiomyopathy with Congestive Heart Failure. The right ventrical is elongated and floppy and can't function well and has been pulling on the mitral valve most likely causing it to leak. Before the leak got so bad, my Ejection Refraction Rate was up to 55% (with 60 being normal). Right now it's only 28%. Whether they think it will help the pre-existing condition or not, I'm going in believing that without the leak being so bad, that my heart function will again improve. I had my first ICD in 2007 and had to have it replaced in 2011. When first implanted, I was in a study and some of us got an extra wire they hoped would heal the heart. I got one of those wires and my heart did start to heal. As I mentioned, I was up to 55% from my original of 28% like it is now. I have to believe it will make things better because the option of doing nothing, sure isn't working. Even though you don't have the Cardiomyopathy Kathy and I have, it is wonderful to hear that you've had 3 valves replaced and are leading an active life. Thanks for the encouraging words.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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11/19/13 8:46 A

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It's good to hear from you! We're in the same boat (dinghy or not) working on this major life project, track your food - do your exercises. Enjoy! (I could say something about rough waters or smooth sailing here, but will refrain emoticon

If you're like me, other things take a bit of the back burner while I concentrate as hard as I can to get to my goal weight! What an adventure!

Edited by: KAIAHCOMP at: 11/19/2013 (08:47)
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11/19/13 1:16 A

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Wow! KaiahComp. It's nice to hear from someone who's been through all that and is enjoying life.

emoticon

In the great shipyard of life it helps to be a little dinghy.



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11/17/13 6:05 P

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As a very healthy survivor of open heart surgery, with three new heart valves, a pacemaker and defibrillator in 2007, I applaud the Clip Procedure information. I probably wouldn't have been a candidate but it seems wonderful that there is an alternative to open heart surgery.

But I will say that having gone through the valve replacements I have a new lease on life and am very active. I had to have the pacemaker/defib replaced in September after almost 7 years and I'm good to go for another 7 years.

I trust that you will have a good recovery, and like me, find new energy for living post procedure!!

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11/17/13 5:41 P

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That IS great news, Lin!

emoticon
emoticon

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11/17/13 3:48 P

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This is great news!! More than expected!!
Thanks for the uddates and information. Bet your feeling relieved!!
emoticon Have a good week and keep us posted!!

Be comforted in this fact:
The ache in your heart and the confusion in your soul means you are still aive,still human and STILL open to the beauty of this world~Harding~


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11/15/13 7:49 P

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I got some good news today regarding my heart. I've been waiting for the Cardiologist specialist at Sunnybrook Hospital to call me with some clarification about the Clip Procedure I'm tentatively scheduled to have on 18 Dec. He called today. He, the surgeon, and a representative from the company that manufactures the Clip, are all in agreement that I am particularly suited for the Clip Procedure and that rather than expecting at least a 5-10% success in stopping the leak in my Mitral Valve, he expects an 85% success rate. And, if for some reason it doesn't work, this procedure would not preclude having the more dangerous open heart surgery down the road. Also, it's not as short-term of a fix as I was originally told - he has a patient who has had a clip successfully for 7 years and still going strong.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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11/11/13 2:36 P

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emoticon news. Its such a relief when the word "surgery" is removed from anyone's life!! Good luck and hope come the 15th the news gets even better.
"hug your heart it beats for you"
Have a great week.

Be comforted in this fact:
The ache in your heart and the confusion in your soul means you are still aive,still human and STILL open to the beauty of this world~Harding~


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11/11/13 1:30 P

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Hi there - update on my concerns over heart surgery: I just got another e-mail from Sunnybrook Hospital. They didn't book a follow-up appt. to save my heart the stress of extra travel (mentioning that in the original e-mail would have been helpful, lol.) Both Drs. did get together and decided that the new innovative Clip Procedure (without open heart surgery) is indeed the best option for me (again, mentioning they were in agreement would have gone a long way to easing my concerns). The Deputy Head of the Cardiac Division will try and call me on the 15th of Nov. to give further explanations - he's out of country right now. So ... provided there is sufficient donations to the Sunnybrook Foundation to pay for the procedure, I will go into the hospital on 18 Dec. for 2-4 days and have this Clip Procedure which they hope will stop the leak in the Mitral Valve of my heart making it easier for my pre-damaged heart to function. It is my understanding it is this Deputy Head together with the Head of Cardiac Surgery at the Hospital who will perform the Procedure so I should be in good hands. No guarantees on outcome - bit of relief, great relief, or no relief, and not long term solution. It is my hope that if there is relief, my heart function might improve where open heart surgery with a more guaranteed solution might then be viable. We'll see what the Dr. says on the 15th if he is able to call me. I've got my fingers crossed - too bad I'm not flexible enough to cross my toes, lol.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

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11/1/13 7:46 P

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thanks GM - borrowed words but words to live by for sure.

Kathy - I'll see if I can find the e-mail and resend it. I called the specialist's office on the Mon. following the tests and was told he was out of the office for a week. I'm hoping that with their busy schedules the specialist and the surgeon can get together this coming week and discuss my case and that I can hear back in a week or so but that may be too optimistic. Anything that gives me a chance will have to be considered.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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11/1/13 10:22 A

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10 steps to self-care. Love it!! Well said!!
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Be comforted in this fact:
The ache in your heart and the confusion in your soul means you are still aive,still human and STILL open to the beauty of this world~Harding~


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IRONBESS's Photo IRONBESS Posts: 596
11/1/13 1:47 A

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Glad you're feeling better. That's right, Lin - to H___ with that dx!

Glad too you found a book that might be even better on Canada Amazon. I'm in the States. Shipping costs here are high. I sent a box of a local specialty candy that cost $4 to a friend in Germany who loves it, and the shipping was $14!

I didn't get an email about the October trip to Sunnybrook.

The short duration of MitraClip effectiveness is a bit of a bummer. Still, if it's an option, it might be better than nothing. Did they give an idea how long before you hear regarding recommendations?


In the great shipyard of life it helps to be a little dinghy.



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KSGAMMA's Photo KSGAMMA Posts: 2,445
10/30/13 6:08 P

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Kathy - I checked out various sites as well. I found a book on both Dilated Cardiomyopathy and Mitral Valve Regurgitation on the Canadian Amazon site where the shipping is a lot more reasonable and the rates quoted are in Canadian dollars so much easier for me to figure out what the cost will be. I don't think I know where you are located - States or Canada? I'm feeling better today about things and have gotten my head back on straight I think, lol. I've decided to H--l with their Stage 4 diagnosis and it's usual imminent demise. Ain't gonna happen! I am anxious to hear what their recommendations will be from the hospital specialists I saw as far as a clip procedure or open heart surgery. I'm no longer keen on the clip procedure as I want more than a couple of years and the surgeon told us that's all we could expect from it. The other specialist said open heart was too dangerous for me because of the condition of my heart from the cardiomyopathy. He also told us that without anything I will only get worse and worse. I'm thinking my only chance is the open heart but we'll see what they recommend. I had sent you an e-mail about the trip - did you get it?

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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IRONBESS's Photo IRONBESS Posts: 596
10/30/13 1:58 P

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Hi Lin,
I've been wondering how the trip to Sunnybrook went. I'm sorry the procedure caused you such discomfort and you've been feeling low. If it's any consolation, you are an inspiration to me.

It's been 3 years since I was diagnosed with IDCM and moderate-severe mitral valve regurg. You know how when you're first dx'd you read everything you can find on the Net and a lot of it is outdated, like the low 5-year survival rate for DCM. I had an uncle who lived after major heart attacks, bypass surgery twice, heart failure, diabetes, and other problems 20 years longer than his doctors ever expected. He survived with a decent quality of life into his mid 80s. You and others I've connected with are additional proof of the value of improved treatment now available. There are discoveries happening now, and what the future brings we can only imagine. We won't reap the benefit of some of those, but we pave the way for others who will.

Thanks for the Sunnybrook link. It took some digging around the website to find their info on MitraClip. Here it is in case anyone else is curious:
https://healnow.sunnybrook.ca/campai
gn
s/minimally-invasive-heart-valve-repR>air/


Reading about it at other sites too, it sounds like it's suitable to a limited population and not something I'd qualify for. Still, it's a start that may one day lead to minimally invasive valve repair. It also means someone's thinking outside the box. We need that!

I also briefly visited the link Renee gave. The site looks interesting. Will check it out more later. Amazon has that book, but it had mixed reviews. www.amazon.com/Patients-Guide-Surger
y-
Replacement-Repair/dp/0615147038

There are used copies, some from international shippers. Click where it says "Collectible." There's one for $19.99 USD. Click that and there's a link to international shipping rates. Maybe that would work if you're really interested in the book. Int'l shipping is $$$, 16.95 under 1 lb, 23.95 over 1 lb. The seller has a good rating and can be contacted with questions.

Boy, wouldn't it be NICE if "they" could make these life-saver gadgets in our chests a little smaller? At 5'1" I don't have a lot of real estate there! Mine sticks out too. I bought a foam ball for $2 at a local chain store toy department and cut it in half. I tuck it under the seat belt to keep it off the pacer/ICD. Not fancy, but it works okay. I've thought about attaching a velcro strip or something to hold it on but haven't gotten around to it.

Best Wishes, Lin, and hope you feel better.

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In the great shipyard of life it helps to be a little dinghy.



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KSGAMMA's Photo KSGAMMA Posts: 2,445
10/29/13 10:08 P

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Renee - thanks for the link - I even found the surgeon I've been to see in the search. I didn't have much luck finding out about centres doing the procedures as they are all American on that site and I'm in Canada. The book offered for sale looks very interesting and was about $29 US. I looked it up on Amazon Canada and the price there was $143.00! I did find a Canadian book that deals not only with the valve problem I have but also the type of heart condition I have.

Russell - I didn't have a C clamp after my Angiogram but they pt a sandbag on my groin and some kind of heavy heavy bracelet on my wrist to stop internal bleeding. Boy am I glad I didn't take my diuretic medication that morning - I would have had to pee several times. My back hurt so bad I was determined not to give in to the urge to pee as a bedpan was the only thing offered and it would have been too painful with the pain I was already in.

I got my first pacemaker/defibrillator in 2007 and had to have the battery replaced (or so they called it but in reality they replace the entire unit - they don't come with a removable battery) in 2010. I had been going into heart failure regularly and the alarm was going off over and over and we assumed it was lowering the battery - I now think it was the leak causing the problem. My unit has an alarm that goes off in the daytime if there is a fault in the unit and at 7 or 8 pm depending on the time of year and time changes to let me know that the fluid around my heart has reached an optimal level signalling I'm in heart failure. I kidded the surgeon when they replaced the unit, that they should put a zipper in so they wouldn't have to cut me open every few years. Women don't have enough room in their chest cavity to completely bury the double unit. They stick out a bit on men but quite a lot on women. Since I've lost 30 lbs. (well before last week it was 30 lbs, lol) it really sticks out - so much so, I caught it with the seat belt in my husband's car and the last cardiologist who saw it told me to be extremely careful and make sure my pacemaker clinic was aware of it. I would dearly like the valve replacement to be a long term solution.

I've been really down since the tests last week because of a comment made by a Resident at the hospital - he said I was in Stage 4 Congestive Heart Failure. I saw my Nurse today for my 3 month Diabetes check-up (which I aced by the way!) and we discussed Stage 4. She told me that because of my ejection refraction rate that I've always been in Stage 4 with my cardiomyopathy but since I'm not a textbook case, the Resident shouldn't have made that statement. While someone in Stage 4 usually has a life expectancy of 6 mths to 6 yrs. she reminded me though that I realized I wasn't going to die if I moved and then found that I actually felt better with some exercise and then with exercise I could do more and more and that it had already been 9 years. With the valve repair/replacement I'll fool them all and be around for a long time yet. Being so down yesterday really reinforced how important it is to keep your spirits up because the lower I got emotionally, the worse I felt in my breathing and fatigue levels. I wasn't much fun to be around either, lol.

You too do what's best for you Russell and the best of luck to you.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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4_MY_LIFE's Photo 4_MY_LIFE Posts: 13,068
10/29/13 3:15 P

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http://www.heart-valve-surgery.com/

The heart valve surgery has a lot of good information on the different types of surgeries and other related stuff plus has videos and interviews with different surgeons. Plus you can connect with and follow patients who have gone through different types of valve surgeries.

***Renee***
Time zone: EST
Maryland


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RUSSELL_40's Photo RUSSELL_40 Posts: 16,826
10/29/13 11:41 A

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Hope that all this hubbub ends with them fixing your valve, and you are feeling better. My cardiologist is monitoring mine, and if it becomes bad, she will do the surgery immediately. The only thing holding it off is me. If I said I wanted it, they would do it Friday.

I hate lying on my back. Had to do it for 5 hours after my last heart cath, the first 2 with a C clamp on my leg. This is probably due to being on Coumadin, but the first thing that happens when you are told to lay on your back is you need to go to the bathroom. The second is you develop an itch..lol.

I spent several weeks immobile after my hernia surgery, and burst appendix in 2006, but at least then, I could lay kind of on my side. I just moved my bed out to the T.V., and put pillows behind me, and prayed the remote didn't fail while my brother was at work. Once I dropped the remote, and watched ELF with Will Ferrell 3 times in a row, rather than move. It sucked the first time, but it was right after the surgery, and I was in agony from that as well as the movie.

Hope the delay is not too long, and they get it done. Do what is best for you in the long run. If open heart surgery means not having to do this again in 3-5 years, over and over, you may want to go that way. I have an ICD, and have had to have a second on put in now. The battery last 5-8 years, and I will have to be cut on each time, in theory to change the battery, but in 5 years, technology improves so much, they will probably just keep giving me new ones. I am expecting the heart valve change to be a major event, and hopefully it fixes the problem, and that's the end of that. I would hate to have to have heart valves, and ICD changes on a rotating basis..lol.

Hope your day improves.

"We can't solve our problems with the same thinking we used when we created them "

- Albert Einstein

“Whether you think you can, or you think you can't--you're right.”

- Henry Ford


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KSGAMMA's Photo KSGAMMA Posts: 2,445
10/28/13 1:39 P

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I'm having a real down day so don't trust myself to try and come up with something new and upbeat. Here is a copy of a post I made the other day after coming back from my procedures at Sunnybrook Hospital - there is more and new information on the Clip Procedure - a surgeon's opinion - the surgeon who performs them.

" We're back from Sunnybrook and my heart tests that was Fri. evening). Because I was hospitalized in the last year I had to be checked out for that hospital bacteria which I obviously didn't have because they didn't don gowns. We had a surprise at our hotel – they lowered the price of our room to the hospital rate (about $15 a night less) but they also upgraded our room – to a suite! At the hospital, they redid the blood work I had to have done before going in, of course. The angiogram was done up thru my wrist and showed no blockage in my arteries so I did not have to have stints! While they had me there they decided to also go up the veins from the groin and check the pressure in my heart (not sure what that's all about). Friday we met with the Surgeon. The first Dr. at Sunnybrook said surgery would be too dangerous for me and recommended their new innovative procedure to put in a clip without surgery. This Dr. said that that was only a short-term fix with no guarantees of success and if I was 80 and it gave me a few more years, great, but I'm not , I'm only 60 and surgery would guarantee the leak is fixed and for a longer term. The worst part of the whole thing was after the tests the first day – I had to lay flat on my back for 3 hrs. Because I seldom lay on my back I'd forgotten how bad the arthritic pain is if I do – it was agony. After seeing the surgeon on the Fri., we then headed to the next appt which we were late for of course - they booked them too close together. I had the procedure to look at the leaking valve and see if it was fixable and by what method. Now I wait to get the results of that. I have to call and make a follow-up appt. but I'm not sure if it's with the surgeon, the cardiologist specialist or my own cardiologist and I'll have to find out. My own cardiologist does want to see me anyways so I think I'll wait for that one until Sunnybrook has done their reports and sent them to my Dr. so I can see them. I went to the Y and did some of my exercising today but bruising is starting to show up in the right arm and it's pretty sore, as is my back (that was on Sat and Sun). The throat they expected to be sore isn't so that's nice. We're going to go ahead and go to the military ball tonight (that was Sat. night and we enjoyed it after we got past the "raw" beef they served and I do mean RAW) that we have tickets for - neither of us are up to dancing and we'll have to see how long we can both stay awake - we didn't sleep much while away. " We left around 11 and the DJ was just going to start. The dinner started shortly after 7 with a salad but the head table, for some unexplainable reason, didn't go up to the buffet until 20 after 8 and we couldn't go up before them - particularly at a military Ball where protocol is so important. The Ont. Provincial Police set up a roadblock RIDE program (checking for drunk drivers) on the return trip from Belleville to Peterborough - I think they were expecting a lot of drinkers on the road after the huge celebration - we were fine.

Russel, good luck waiting for your surgery - be sure to keep up regular visits to your cardiologist to get the status of the leak checked - you may not be able to afford the wait! At your age, from what the surgeon said to us, the open heart surgery with a complete replacement might be the better option for you as well as me. Unfortunately I have other damage to the heart which makes that option dangerous for me but the alternative is worse. I'm waiting on a call back from the cardiologist at Sunnybrook now to see about finding out the results.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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RUSSELL_40's Photo RUSSELL_40 Posts: 16,826
10/28/13 1:34 A

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I have a leaky mitral valve, and this is interesting, but at 39 years of age, I have put it off till my brother finishes college, so he can pay the bills if I were to die from the procedure.

I have talked to a few people who got the valve replaced the old way, and went on to live quite well with a valve from a pig's heart. I have a bi-ventricular ICD, and don't really care for another piece of machinery inside me..lol. Of course, recovery would be easier, but it sounds like there is a bit more risk at this stage. I am sure that it will become much safer, but I think I will just get it done the regular way in a year or two. The things they are coming up with are amazing. I am waiting for them to be able to grow me a new heart from stem cells.

This doesn't seem much more invasive that a heart cath.

"We can't solve our problems with the same thinking we used when we created them "

- Albert Einstein

“Whether you think you can, or you think you can't--you're right.”

- Henry Ford


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KSGAMMA's Photo KSGAMMA Posts: 2,445
8/25/13 3:46 P

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ohhh, that sounds awful! Mine has always worked when tested and fortunately only when tested!


Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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IRONBESS's Photo IRONBESS Posts: 596
8/25/13 2:07 P

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Thanks for the info, Lin. I will check Sunnybrook web site.

I have a biventricular pacemaker with ICD and have 3 wires too plus an extra booster coil because my heart wouldn't defibrillate when the device was tested during the procedure. They had to use the big paddles to get me going again. I went back to surgery 2 days later to have a different wire put in.
It was quite an experience. emoticon




Edited by: IRONBESS at: 8/25/2013 (14:12)
In the great shipyard of life it helps to be a little dinghy.



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KSGAMMA's Photo KSGAMMA Posts: 2,445
8/24/13 10:03 P

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thanks for the links Kathy. I don't know if you can find this but Sunnybrook Hospital in Toronto has a newsletter type magazine and there was a featured article on the Mitral Valve Repair and some of the Drs. working on it. You might be able to access it on-line through the hospital site. The web address for the hospital is www.sunnybrook.ca. I've already benefited from the expertise and innovative procedures at Sunnybrook. After being diagnosed in 2004, I became part of a study to see if an extra wire put in the heart with a pacemaker/defibrillator will heal the heart. I got the wire and it did help heal my heart - until the valve started to leak and my function dropped through the floor again. I've got my fingers and toes crossed that they'll be able to help me once again. This procedure isn't run of the mill here either. In fact, it's not even subsidized by our medical plans and I learned through reading the above mentioned article that they rely on donations to the Heart Department at the Hospital. I should find out at 12 Sept appts if I qualify.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


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IRONBESS's Photo IRONBESS Posts: 596
8/24/13 2:47 P

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I've been reading up on this lately. Thanks to fabulous SparkFriend LinJarvis for bringing it to my attention. FDA is not keen on it here in USA, but it gives hope for safer procedure with fewer complications and an option for some at high risk with surgery.

www.youtube.com/watch?v=YESotpfB8Oc

www.medpagetoday.com/Washington-Watc
h/
FDAGeneral/37994


www.ncbi.nlm.nih.gov/pubmed/22222076

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