Cheryl's Journal

On Oct 1st, I celebrated my 10th mitral valve repair anniversary. My repair is holding well and I’ve always said, “life is great on pills”! I have two other leaky valves and my cardiologist hopes I outlive the need for a further surgery. Naturally, I haven’t pinned him down to an anticipated expiration date. It’s funny how this particular surgery, heart surgery, surpasses all others in that we mark and celebrate each and every year. I met and remain close friends with several people from the HVJ site, and in February, next year, once again, we plan on getting together to celebrate all of our 10th anniversaries. Well, not quite all. Our dear friend, and mentor, Fran Zilko, passed away just over a year ago but her husband, Peter, will ever remain in our circle, and will of course, join us in our celebration. I met Adam just as he was opening this site and everyone of us has to reflect and acknowledge the support, and comfort we received from joining in, and being there for each other. Belonging to this remarkable group made my own recovery so much easier, knowing I wasn’t going through this alone. I am fortunate that my caregiver and husband was there for me, but there were some things I didn’t wish to share with him, such as my fears and insecurities about “what if”. Here I found vital input, information and friendship every day, before and after my surgery. Even now, ten years later, I still regularly check in and read up on what’s new, and there is always something new. Adam is truly an amazing person, using his talent, insight and personal experience to aid in the support and subsequent recoveries of now, thousands of individuals, and their caregivers, who are going through heart valve surgeries. Adam has built the HVJ site to an astounding diverse, and widespread community where we can share, and compare notes and procedures, and I for one, am totally proud to be a member. Adam, I thank you for your innovation in the HVJ site and for the individual input you have given over the years. Bless you and your dear family. You really are a superstar! Thank you. Thank you. Cheryl, Ontario

How wonderful it is to be able to get together with life-long friends who met here on HVJ. Peggy and Duane Hunt, Susan and Richard Ingham, Fran and Peter Zilko and Peter and myself all have a wonderful time when we visit and pass along our stories yet again. We reminisce and give thanks for our healing and current health. Every day is as blessing and yes, there is life after heart valve surgery. It is awe inspiring when we look at the growth of Adam's brainchild here and we are all so proud of him and the work he does to keep everyone so informed of the progress being made daily in the heart valve surgery field. WOW Adam, you are the best!

Hi Just dropping by to add a couple of pictures to my journal. For the second year in a row we arranged a small get-together in sunny Florida with HVJ friends Duane and Peggy Hunt and Fran and Peter Zilko. Unfortunately Susan and Richard Ingham couldn\'t attend in person so we managed to visit via Skype. Richard, Duane, Fran and I all still compared notes regarding our surgeries. Our spouses laughed along with us and had great stories of their own to be rehashed. While we are still in written touch with several HVJ support buddies, it is really nice to get together personally to share a hug. Adam, you are a star. You are doing amazing work here and we all very much enjoy staying caught up with the technical advances being made. Thank you for providing a forum that suits the needs of so many, whether they wish to become an active journalist or just be able to obtain information through the many vehicles you provide including your ever-expanding book. You are meeting and mixing and learning from the best there is. Awesome!

Hi Friends February of this year Peter and I visited Florida and managed to arrange a get-together with a few of my HVJ friends - Fran and Peter Zilko, Peggy and Duane Hunt and Susan and Richard Ingham. (These are just a few of the wonderful people I have met here and keep in touch with.)We all planned a weekend in Peggy and Duane\'s home area. We visited, toured, ate and also all attended Pastor Duane\'s very lively church where we met some of his family. We hope to make this an annual event. HVJ has been a wonderful tool to learn and just plain garner support when I was going through my surgery and recovery Oct 1, 2009, 2 1/2 years ago! While I drop by often to read current journals I rarely leave notes, passing the torch to those who are involved now. I am in awe of how this site continues to grow from when I first joined where I was one of the first to write. I will always share a close bond with those others I met here and if I haven\'t been in touch lately, know that you continue to be in my thoughts and prayers. I\'m doing well and am back to a very full and active life. Adam, I wish you and your family well. Thank you again for this platform. Cheryl, Ontario

Today marks one year since my surgery and I want to officially sign in one last time before saying goodbye. I have met some absolutely wonderful friends on this site and wish to thank each and every one of you for your kind journal entries and e-mails offering support, advice and encouragement. I kept my journal private from my friends and family, only giving out access most recently. This was my own little battlefield where I felt free to air my doubts and concerns without worry of upsetting or instilling fear in those closest to me. I already share e-mails with many of my friends here and will continue to do so. I will continue to follow some friends here through their recoveries as well. The caring never stops. Adam was just starting this site when I first signed on so there weren’t nearly as many members with which to correspond. I feel very fortunate to have had this resource available to me throughout my surgery and recovery. The support I found here was instrumental in helping me understand and accept what I was going through. I wasn’t alone. I wish to thank my dear husband Peter (who never touches a computer) for his continued love and support. He has been my champion. My sons and family have always been here for us and readily offer help. Most of my friends live out of town but they still made time to see to our needs. My girlfriends Jonny, Bonnie, Rosie, Christine and Linda saw we had a freezer full of meals and sweetbread treats. My daughter-in-law Christa remains to be the best ever, always taking on my responsibilities as if they were her own. Friends sent flowers, fruit and treats until I had to say stop already – the fridge was full. As you all know, it’s when the times get toughest that you find out who your real friends are and Peter and I are so blessed with so many. I also thank Pete’s Rotary Club, his countless friends and of course his golf for helping to keep him grounded and occupied during this past year. I consider my health restored even though I am a work in progress. The cardiologist is tweaking my meds. My next full cardio check-up is in December but I don’t expect any bad news. I have learned so much from others here that I will attend that appointment loaded with questions seeking technical answers to so I can better monitor my heart health. I walk and exercise regularly. I am grateful for the health I have and thank God every day for giving me the ability to continue to enjoy my life. I am one of the very lucky ones and feel my surgery and recovery were relatively smooth with none of the major obstacles some here have suffered. Lori B was a devastating loss and a lady I won’t soon forget. Kimberly continues to fight with poise and courage and I will be keeping her and her family in my prayers. I will never, ever forget the poignant journals written by David as he sat at Kimberly’s bedside pouring his heart out. He wrote the very thoughts that go through every spouse’s mind at such a time. I have to thank David for sharing his most private feelings and say again how lucky Kimberly and he are to have found each other. David and Kimberly I shall keep you in my prayers and hopefully your future will be much brighter soon. Please stay in touch. Adam, you are amazing. I close by thanking you for the privilege to be a part of the Heart Valve Journal family. I wish you and your family all the best and will keep everyone here in my prayers. I pray for your continued good health.

Reality has struck a serious and terrifying blow today. I\'ve been trying not to read between the lines in Adam\'s postings but it was becoming very evident that Lori, one of our HVJ family was in serious trouble following her surgery Friday. I have been constantly getting back into the journals watching for an update and praying for her recovery but sadly it just was not to be. It is impossible for each of us here not to relate to the fear and doubts we went through ourselves facing surgery and as each new patient and family comes along, we so easily can identify with what they are going through. Now sadly we will share in the tears, loss and grief Lori\'s death will cause. Somehow we will have to accept this tragedy and remember to keep Lori and her very dear family in our thoughts and prayers. This truly is a sad day.

Finally, today I called the surgeon\'s office to ask about my continuance on Warfarin. Dr. Latter was good enough to get right back to me saying it was long past time. Obviously there was a breakdown in my general physician\'s office in reading Dr. Latter\'s discharge letter. Oh well, no harm done in taking the rat poison for an extra 5 months. My daily pill box may yet be put out to rest! It pays to do your own follow-ups according to your surgeon\'s letters when you are dealing with more than one doctor. When in doubt, ASK.

Hi Everyone - just wanted to share my 8 month post-op visit with my cardiologist yesterday. I haven\'t had an echo or any other form of testing since December so based upon that and what I have or haven\'t been feeling, I\'m in good shape. The doctor isn\'t concerned with my existing pvc\'s, missed, double and triple heart beats. He told me to not be concerned with the leaky tricuspid - that lots of people have those, nor to worry about the little bit of aortic insufficiency or the trace regurgitation left by my repaired mitral valve. He doesn\'t expect me to be further bothered by any of this. My next visit in December will be a technical one. I asked how much longer I\'ll be on Warfarin and he asked me who prescribed it. Well, it was the surgeon so he suggested I contact the surgeon and get permission and advice on stopping. I had a repair but am still plagued with an irregular heart beat so I thought that had something to do with my continued use. I\'ll see what he has to say and then perhaps run it past my family doctor. I don\'t mind taking it but now that summer is here and my extremeties are more exposed, my husband isn\'t looking too good when it comes to all of the wicked bruising I am exposing. The doctor recommends I remain on the Beta Blocker as it gives my heart a break and my body is getting accustomed to it, meaning, I don\'t always feel quite so lathargic. He wants me to continue rehab until December. That is something he provides within his office and is being paid for by our health system. About once per day I still get a reminder of the extreme palpitations that still exist but it beats the 15-18 per day I was getting. My scar is fading and I think, hardly noticeable when I wear a \"v\" neck but yes, lower than that it is definitely a big pink crooked mark. The tube hole scars are also pretty significant but then, no one is seeing all of that. I am feeling what \"normal\" people must feel like. Thank you once again Adam for writing your book, your blog and this HVJ site. Being able to get a patient\'s perspective of surgery and recovery went a very long way in how I perceived the process. The work you have done is truly amazing. Thank you as well to my husband, my family and friends and to my friends here on HVJ. Wishing you all happy mended hearts.

Six month’s post-op – where does the time go? I am really pleased to be able to share that my six month follow-up was an uneventful one. Uneventful – a great word. At this time last year my world was being rocked as I was told open heart surgery was my only alternative to a future. The surgery was pretty much routine in that a repair was carried out successfully with the implantation of an Annuloplasty ring. I quickly overcame a right lung pleural effusion but remain plagued with pvc\'s and bradycardia arrhythmia which are now being kept under control with a Beta Blocker. For the time being I remain on Warfarin. I had to cease aggressive exercise about nine months before surgery so now have a big job ahead to recoup my stamina. I enjoy attending rehab regularly and am learning what is considered safe for my heart to tolerate. I will get better. My scar is fading although I still feel minor pulling or slight pain from the sternum or tissue around the sternum depending upon what I am doing. It’s not terribly painful but there is no doubt I’ve had work done. Peter remains somewhat timid in his belief that I am okay so for him I need to prove myself more although I am pretty much back in full charge of the housework. Some things are easier for him to let go of than others! I cannot express my gratitude enough for the support and understanding I received and continue to receive from my husband, friends and family. I love you all so much. There is nothing I take for granted. I consider myself fortunate because my broken heart is mended. Does anything beat that? Well, grandchildren and the blessing of being able to enjoy them. Thank you Adam for sharing your knowledge and personal experiences with us through your book, the insight you had in beginning your blog, and now this Heart Valve Journal Site which is giving comfort to so many. I am truly grateful for so many things including meeting some wonderful new friends here. I am just so blessed.

I was just reading in Joseph Minnucci\'s updated journal that he was cautioned off overuse of calcium supplements including Rolaids to help preserve his new aortic valve. (Thank you Joe for sharing that.) I would think many of the women especially are taking calcium supplements including myself so thought I\'d throw it out there to see what comments come forward. I had a repair so maybe that\'s different but still am interested in anything that may help preserve the valves. I\'m going to post this question on Adam\'s blog as well.

The Beta Blocker reduces my heart rate considerably and that\'s just half a pill so this morning my rehab nurse reduced the expected heart rate to be more in line with my new numbers. My resting pulse rate has dropped considerably to the 50\'s - can you just imagine how mellow I must be? I still find I don\'t have a lot of energy so perhaps I\'m just not used to being on this drug yet. If this is something I must stay on for a long period of time I do hope I get more pep. On the positive side I rarely feel any of the more turbulant palpitations that I felt in the past and I haven\'t felt much, if any, of the severe pressure on my chest while walking. I have to admit I have relaxed about getting my INR checked as regularly as I did in the beginning and after reading Duane\'s journal yesterday, I got up and got it done immediately. Hope everyone is enjoying as sunny a day as we are here in Ontario.

Thought I should just write this down for future reference for the ladies. If you are at all concerned about personal privacy, I more than highly recommend pj\'s for the hospital rather than nighties. With a sternotomy you are not allowed to put any pressure on your hands because of the pressure that then puts on your chest. To get out of bed you are shown how to use your elbow to bring yourself up to a sitting position and then swing your legs over. If you have a nightie on you cannot hold your body weight and straighten the nightie out before getting out of bed. Once you have the catheter removed, you should be able to be helped into some pj bottoms which keeps you properly covered for all instances. I kept the hospital gown as a top until most of the tubes were removed and then pj tops, preferably button ones, are still very convenient for incision care etc. Flushable wipes for personal hygiene. It will be many days before you get to have a shower or are up to a good personal wash, so using flushable wipes at least keeps you decently clean and being flushable, they aren\'t landing in the open garbage. I-pod and book. Bringing your own music will help enormously in keeping you focused elsewhere and calm when needed. You may be taken out for various tests and it\'s nice to have something to do. Sometimes it\'s hard to concentrate on the TV or the TV may accidentally get pushed out of your way and for the first while, you aren\'t going to be able to retrieve it yourself. I kept my I-pod in a little cloth pouch safety-pinned to my pj bottoms for security and easy access. I still happen to have diaper pins around so I used one of those - a 37 year old antique. I also found ear wires that held the earphones so they didn\'t fall out when I was resting. Socks. My feet got cold and if I had socks on and had to get up on my own rooting around for my slippers, at least something was on my feet. Being on the bloodthinner really made me cold. I had each day\'s pj\'s in large Ziploc baggies and left them all at home. Each day my husband brought me in a fresh Ziploc and I put my laundry in the bag and returned it so I wasn\'t building up a huge wardrobe at the hospital. I\'ve answered a couple of ladies on things I highly recommended packing for the hospital so thought I\'d jot it down here too. Hope it\'s helpful to some.

I started my Beta Blockers last Thursday. The doctor said they may cause me to be tired so I could either start at one pill and reduce to half or start at the half and move up. I started at the half and so far, so good. I haven\'t really noticed any of my former irregular heart beat symptoms but I am a little tired and lethargic and my pulse has dropped considerably. Sitting here typing it\'s 55 bpm, down from 77-80ish. Don\'t think I should attempt the full pill or I may just fall over. Tara suggested I split the pill between morning and evening where I would be getting the full affect but not all at once. These pills don\'t look as if they will split into quarters easily but I\'m going to give it a try. Can\'t hurt. Thanks Tara. When I\'m at the Mall on Friday I\'ll be giving this pill the full workout and hopefully it has done the trick. Should I be worried about the drug induced low pulse rate? My rehab nurse is back from holidays next week so hopefully she will know the answer. My INR was down a little this week so I have to increase my pills every other day for a bit. I was indulging in broccoli and spinich on the weekend and forgot to up my pills a tad. I got caught. Otherwise, I\'m feeling pretty good right now, especially if we have these palpitations and live fish under control. I can see where people start taking uppers and downers because if I\'ve pretty much got things under control, I may just need a pill to pep me up and when that happens, perhaps there\'s an easy one for diet. Now that I mention it, I\'ve had a couple of sleepless nights - perhaps a gravol for that. I will need a larger pill container.

Hi Everyone Those of you who have said you were suffering post-op palpitations and irregular heart beat - this may be of interest to you. I wore a heart monitor day and night for two weeks and today got some results. I have palpitations, totally irregular heart beat, pressure on my chest and sometimes I feel as if I have a live fish in my chest when the palpitations are really violent. I have been having some variation of these symptoms up to 14-16 times a day and they were driving me to distraction. The doctor suggested my heart has received a trauma in the form of the operation and it hasn\'t been able to settle down into a nice rhythm yet so for the next six weeks he\'s putting me on a Beta-Blocker (Novo-Bisoprolol). He said it should eventually settle down so let\'s see what the next six weeks brings. Pills. I\'m happy with pills. Bring on the pills. Anything but going back to the hospital.

Hi Tara I tried to find you in the Heart Journal Index and your name didn\'t come up. Perhaps you are a spouse of a heart patient. Anyway, what a dear you were to write and give me some support regarding the heart monitor. You did help explain what could be happening and will help me feel better until I get the results on Thursday. After wearing the thing for nearly two weeks weighs on your thoughts because I\'m getting an average of 14-16 episodes per day. Without knowing what it was picking up on could drive you nuts with worry. Over the weekend we were painting etc. and every time I turned around I was beeping. I would lay on the couch and then get up and beep. Arrgh! Thanks Tara. It was really kind of you to drop by and leave some encouragement. It was needed. Cheryl

Hi Everyone I\'ve been fitted with a heart monitor and have to wear the thing for two weeks. I\'m almost done. It is small, fits into my pocket and every night I phone in a description of the various episodes it has recorded and then I put it up to the phone receiver, push a button and it talks to a machine for about 20 minutes. How cool is that? I\'ve never had one before so it\'s a novelty. I\'m still trying to figure out why it beeps when it does. I can run up and down the stairs 20 times a day and the one time I walk up the stairs, it beeps. I can do housework (yeah, Pete has officially retired from that) and nothing happens and then I sit and relax - it beeps. I hauled butt and quickly walked into the show last evening - nothing. Half-way through the show, it beeped and recorded - twice. A couple of times it beeped when I was reading in bed late at night. It has never recorded when I slept so I find that interesting. Sitting at my granddaughters hockey game last week the lady next to me received at least 20 text messages. I beeped twice and she noticed I ignored it. I told her I\'d get it later! Ha. I feel very comforted by the fact I\'m wearing this thing. I don\'t always know what it\'s picking up on, but when I feel a heaviness or thumping and it doesn\'t beep, I activate it. If this is my new normal, I just want it confirmed and then I\'ll learn to live with it. I get my results on Thursday. Pete and I just gave each other the very same Valentine card. What a coincidence. We were really feeling the same thing but out of all the cards we could have chosen from.....we chose the same. He\'s been a real champion throughout my recovery. He\'s been my man since I was 15 and has seen me go through several surgeries but nothing like this. Thank you Lord. Happy Valentines Day to everyone. Wishing those recovering - good health and those waiting for surgery - peace, tranquility and inner strength.

There hasn\'t been a lot of improvement this past while. As a matter of fact, I\'ve been finding the irregular heart beat a bit of a nuisance as it is sometimes accompanied by a heaviness on my chest. While I don\'t have great difficulty breathing, I do struggle sometimes more than others. My rehab nurse finally booked me with the cardiologist this morning. He didn\'t seem to panic - just asked if the palpitations were bugging me, and yes, they are. Tomorrow I get fitted with a heart monitor which I will wear for the next two weeks. I\'ve been told I have pvc\'s and they are benign; however, they are also a nuisance. I still have two leaky valves but I think I\'d like to know a little more. Quite honestly, I can\'t say I feel a whole lot better after having gone through this surgery. Humph! I\'m a little discouraged. Anyway, we\'re off to dance class tonight so I\'m still staying as active as possible. Hasn\'t this been a heck of a week for a few of our friends?

Hi Everyone I've been faithfully following everyone's journals and guestbook entries and noticed how many of you invited your friends and family to follow along. My husband was asking me why I didn't do the same and I can only say I didn't want to share with my family in particular what I was going through or what I'm going through now. This site is my sounding board. That's just my little quirk of keeping some things from those closest to me. Anyway, I continue to progress with my rehab. I get funny looks when people ask me how my rehab is going. Heart patients only think of one type of rehab! I coughed constantly after surgery for 13 weeks and can finally say - the damn thing is gone. My Christmas stocking was chocked full of cough candies of every type you can think of. My slow and irregular pulse is starting to pick up and get more regular. My resting pulse was 54 and now it is 72-80 and not near as many missed heartbeats. I'm not sure if this is good or not but it hasn't raised any eyebrows. In my particular rehab class I am the only open heart surgery - the rest are all stents. There is lots of curiosity about what the surgery is like. There are so many people on this site now. I think I'll suggest to Adam he might try finding a way of including an index of the names, surgery dates and diagnosis so we can find each other more easily. Cheers everybody. Cheryl, Ontario

I'm continuing my weekly rehab sessions and find I'm thoroughly enjoying them. The nurse/technician who monitors the class is a wealth of helpful information which I find reassuring. I'm told I cannot let my heart rate get above the level recommended by my testing so I have to be content with a level I feel is lower than where I want to be right now. In exchange I'm trying to get on the treadmill at home twice daily. I have quite an irregular heartbeat which I'm told is not a concern. Humph! I feel great though and more and more am feeling better than my ole self. I still have some minor pain in my shoulder blade and chest but nothing worth bothering about. Cheryl, Ontario

Finally had an echocardiogram and echo-stress test this morning - 8 weeks post-op. My blood pressure is pretty normal (124/84) and during exercise (150/70) but my pulse is totally irregular with no pattern. While the technician brought it to my attention (I already knew) the doctor said it was normal after surgery. Strange, but I haven't heard anyone else on the site mention this. I forgot to ask if it will continue or will I eventually get a regular heart beat? I am still coughing and the doctor said the breathing tube must have disturbed something and I could possibly cough for months to come. Some days it is really good and others like today I'm popping cough candies often. Such a pain. My aortic has slight insufficiency and the tricuspid is leaking mild to moderate and the repaired mitral valve is still leaking a little as well but the doctor said all is well and sent me on my way. My arteries are totally clear thank goodness. I am taking Diovan for high blood pressure, Crestor for high cholesterol and for possibly only one more month, Warfarin (Coumadin). I've only done one rehab so far but will be continuing weekly. I shopped for EIGHT hours on Saturday but had to get my husband to make a few calls to the mall to collect the parcels. I can walk the walk but just have trouble carrying much of a load. I suppose my recovery is progressing normally so now it's keep up the exercise and get my stamina back.