Steven's Heart Valve Journal

Diane Maher posted a note for Steven that says: Stephen...I am sending hugs for your asymptomatic question. It brought a hearty laugh for both my husband and me......my first in 5 weeks. If you read my latest/recent journal postings, all will be self explanatory :). Granted, I am locked still into present, rather than longer term, considerations but under the circumstances, I am sure I will be forgiven.
I too was asymptomatic...although I was finding myself getting more tired at the end of the day before my surgery. Also, I was on no meds. which was a surprise to all who would ask for my list at any consults relating to my heart.
My question now is, did my body go into some kind of shock after surgery? Once my cath. showed clear arteries, both my surgeon and anesthetist said I was a 'straight forward/clear cut case'. Mmmm.
Although my surgery was an unbelievable 5 weeks ago today, it is all the subsequent drama that I am pushing back into the rear view mirror on a daily basis.....and the top milestone.....it has been several days now since my bladder started working on its own now....which I can't find myself really celebrating yet as it has left me with a pretty strong case of wariness about everything at the moment. However, I am still focusing on gaining control of what I can....VIHA is sending a physio tomorrow to help me restart my cardiac program and at least build some confidence from that and my GP returns from holidays on Friday, so I will be able to have some discussion from his point of view of where we go from here. First echo is on the 4th, then the cardiologist consult followed in mid October by the surgeon consult.
But the great thing which I am so thankful for, is my feeling of strength to accept and overcome all that tries to block my path to a strong recovery...which no doubt will not find me being the same "old" that I was but still a really good and happy manageable....and with luck, even more than that ?? Everything that I have read in your journal Stephen, indicates you will face your future whatever it may be, with resilience, matter-of-factness, courage and strength. And this I wish you an abundance of for both you and your loved ones.

Carolyn Moser posted a note for Steven that says: Thank you for taking the time to share your words of experience and wisdom. I am copying them and putting them in my file for when I have my mitral valve repair. I'm in the wait and watch group for now. You posted on my 70th birthday so thank you for a unique and relevant birthday gift.

Thank you for # "3) I am not a piece of flesh or machinery to be worked on." While I certainly want to be treated as a person and not a "mitral valve repair" you gave me the tools to remember that they are not the "nurse/s", the "ward staff", the "doctors". They are people too. I need to connect with them unique person-to-unique person. Without your reminder I can envision myself being so caught up in my own fears that I would forget recognizing their need to be appreciated as individuals.

I join all of your long time supporters in wishing you the best. You are a special person. And please thank your wife for urging you to write your post.

Jack K. posted a note for Steven that says: I have read your story and I am praying for you ... you have been a strong man through this ordeal and now you need to continue to be.

Zoe Wiggall posted a note for Steven that says: Hi Steven how are you?

Zoe Wiggall posted a note for Steven that says: Hi Steven how are you have you got a date for your surgery yet?

Zoe Wiggall posted a note for Steven that says: Hi Steven how are you have you got a date for your surgery yet?

Chris Purvis posted a note for Steven that says: Hey Steven-I know your asymptotic but getting that aneurysm fixed will feel good knowing it’s gone. Mine was 5.3 and stopped before the hemi-arch and walking around with that scared me daily. You might not feel better immediately but over time you absolutely will and again getting Aorta corrected is a huge deal.

Zoe Wiggall posted a note for Steven that says: Hi Steven how are things with you?

Steven my mate! We may not be in your face on HVJ but we're watching out for you! Good to hear your shoulder is on the mend and that your valves aren't causing you physical problems. You have prompted me to update my journal as I saw a local cardiologist last week who seems to pass muster and he gave me the all clear to come off the beta blocker and duiretic that I have been back on since February. I cycled 15 miles yesterday in the heat (we're in Spain at present) with no difficulty whatsoever so here's hoping! Love you lots. Please keep your journal going. Hugs from Penny (Scotland)

Hi Steven

Nice to see your journal entry. So the kids are finally off to college and both moving quite a ways away? That will certainly mean for some changes in your home. Mine at least moved within driving distance which meant we still saw them regularly.

Are you experiencing a heat wave out your way? How do you manage in the heat? I love the heat but last year before my surgery I found it really difficult to breath. Stay cool.

Cheryl, Ontario

Hey, Steven, buddy, good to hear an update from you. Congrats on your kids graduating and springing the nest. As you continue your waiting phase, I pray that God will give you peace and patience. With following all the journals, you'll be prepared for any and everything. I'm constantly amazed at how different everyone's recovery journey is, but I have noted that almost everyone has some pretty sizable bumps of some kind. Take care.

Duane

Steven ==

Thought about you when reading Don Franz journal from Alberta and Ros aka Sivakami's from the UK. Espially her frustration with lack of choice of doctors and delays in treatment. How are you doing?

Jim P

Hi Steven

Great trip and great memories other than waiting out the volcano ash. We did Italy for three weeks a few years back while I was still able to do the walking and touring and I look forward to returning. It's still great to get home though.

Wishing you luck as you move forward to what's next.

Cheryl, Ontario

Wow, what a vacation. We were stuck in Paris after 9/11. Had a couple of scary days but finally got home. Keep us up to date on scheduling, etc.
Fran Z

Hey Steven! Hang in there buddy! Glad to hear you had a great trip, volcano notwithstanding. I'm getting back into playing pipes so I should be up for a gig later in the year - of course you may be having surgery then too, but that would be OK. Hopefully you will have your surgery very soon.
Kathy Jamison-Patnode

OOPS...Forgot to sign the previous long message!

Jim Patrick ...Tucson

Steven:

Several things:

Thanks for the suggestion about my bucket list. It was the right idea, and looking forward to it has helped a lot.

Wonder if my own experience is at all similar.. Diagosed with severe aortic stenosis about 3 years ago after my family doc heard a heart murrmer ( a heart shout, actually). Found a cardio at "cardios R us", and had echoes every year. He kept saying "are you short of breath?.,,we don't operate until symtoms appear. Did not feel particularly short of breath, even on my frequent spring, summer and fall trout fishing trips to Arizona's White Mountainss, where I would row my inlatable on lakes at 9000 feet. Oh, I was short of breath there, but I blamed it on 72 year old former smokers lungs at 9000 feet.
Mainly because I just did not feel real good, I finally decided to get a second opinion from a second cardio. Was fortunate to get a suggestion about one of the best in Tucson. He did his own echo, and after seeing results, did an angiogram, which they tell me is the gold standard for heart disease analysis.
As soon as he saw the results, he explained in detail why he would recommend surgery right away. He inspired confidence, so I agreed immediately.
So, I read your story, and your posts, and see that you have had several scary incidents, pretty consistent symptoms, and a trusted family doc who is worried about you. And I am thinking you are either (1) a raging hypochondriac, or (2) someone is missing a diagnosis. So my advice would be to run (not literally), not walk, to the top heart clinic in Edmonton and get a second opinion. I would ask my trusted family doc what she thinks of that and what advice she would have about whom to see, and what kind of history and records to send or take. At the very least, you would get confimation of the existing diagnosis, which may help your peace of mind.
The last thing is that I was also scared about pain after reading Adam's book, even though I am normally more tolerant of pain than the average bear. Relax. The hospitals are now experts at managing pain, and if you even think you might have a pain coming, they will give you stuff that will kill the pain of a hangnail. And my surgeon said that less than one percent of open heart patients ever get hooked. I had pain in ICU, but it never got even bothersome due to the meds. And once out of ICU, I asked to be cut back to a couple tylenol and that was plenty.
I wish you the best, my friend, it has got to be frustrating to have symptoms that affect the quality of your life, and not have the end in sight yet.

Hi Steven
Thank you so much for your helpful posts to me. Am now back home in FL after a non stop flight from Cleveland. The flight went well, just very tiring. As you may know, I waited from Jan 3 till March 18 to have my surgery and yes, it was frustrating. But do believe with Duane that God has a plan for all of us. Right now, you need to have that wonderful vacation and be strong and healthy for when you get yo finally have your surgery. I can't recommend enough getting some kind of guided imagery/relaxation tapes, they really helped me a lot.Have fun.
Fran Z

Hey Steven! I can very understand your frustration with the whole situation. While I waited for my valve to get bad enough I kept wondering when my ticking time bomb of a heart would go off and if they would diffuse the bomb before it did.
Do take and enjoy your vacation!
Still praying for you and awaiting your next post.
And yes, I will take you up on the offer to come up & jam with you - may bring my bandmates with me.
Take care & God bless!
Kathy Jamison-Patnode

Steven,

Sorry for your frustrations! I can certainly understand. You may or may not believe it (and that's cool), but I believe God has His timing. And I'm praying for His timing for you. Do have a good vacation, and we'll all be waiting to hear from you when it's time. We're here for you, bro.

Duane in FL

Hi Steven! I haven't updated my journal yet but didn't want to wait to say thank you so much for the encouragement and support over the last few weeks - I just hope that I can do the same for you when it's your turn...
Have a great holiday, warmest wishes Penny (Scotland)

Hi Steve
Just dropping by to say you are in my thoughts as you await your various tests. Take care and hang in there. Cheryl, Ontario

Steve... That is so cool that your family doc is getting you in to see the cardio! You deserve to be treated well! Enjoy your family vacation & keep us posted.
Take care!
Kathy Jamison-Patnode, the piper

Steven,

It's great news to get the attention moved up, but I'm sure it brings mixed feelings. I'm one of those persons that believes you just gotta know rather than avoid. Keep us posted on the results and tests, and we'll pray for God to put you in the right hands and timetable. Do have a good vacation with the family!

Duane in FL

Steve,
Thanks for the update. I complete understand how you are probably feeling. The waiting aspect really is not much fun. Hang in there, and will talk to you soon.
Patrick in STL

Hi Steve
Things are going to move along a little more quickly than you first thought. That's a good thing. That was nice of Frank to give you his e-mail so you can get the real low-down. Enjoy your holiday. Cheryl, Ontario

Steven, I would be happy to tell you anything you might want to know. Maybe the best way to do that is through email. My email address is: fdvor753@gmail.com. Looking forward to hearing from you.

Frank

Good Morning Steven
Thanks for your post to me and so nice to know a complete stranger is thinking and praying for me. I can't believe how special the HVJ people are. They have shared so much and my hospital stay will be so much easier as I will be more prepared. If there are complications (as there have been several with people), they came through them and I will also. March 18th is coming!1 Hope you start to see some signs of spring up there in Calgary! Please keep posting as I am following your journal. Thanks again.
Fran Zilko

Hi Steve
Just wanted to be sure you got a copy of Dr. Gillinov's Transcript from Adam. Dr. Gillinov answers questions about the various valves and you might just find it helpful.
How did you like that hockey game?
Cheryl, Ontario

Hi Steve
I've calmed down but just a bit. Anyway, I had a question for you please. You did some research about the dental treatment before surgery etc. and I was wondering what site you were on. I've got a dental appointment in two weeks (and of course I'll be taking some drugs prior) but is 4-5 months enough time after surgery to be safe for a cleaning etc.? Thought I should see what you found out.

Hope you are well. We finally got some snow this week - not enough to use a snowblower and now the driveway is bare again. Pete's car is 4-wheel drive and we haven't used it at all this winter. Love it.

When do you begin your tests? Take care. Cheryl, Ontario

Hi Steven,
I took your advice when you said Go Go Go! Now it will be Go Back! I threw caution to the wind last night while I was on the run and figured that a glass or two of merlot couldn't make my heart beat any faster than it is. In all of my admission interviews - and there were many- the doctors were interested in the breathlessness and asked when I had experienced it last. I do notice it mostly at night. I would suggest that you write EVERYTHING in your journal, thoughts, fears, tweaks, test results, weight (you need to weigh yourself daily to check for any fluid retention) and medications either prescribed or otherwise. Also in the same journal your eating and exercise activities. I have done this since last October and after a few days it gets an easy habit. I hand write my journal so that I can write as I feel rather than trying to remember when I'm at my PC. Small consolation that if you do need surgery at some time in the future you will be bombarded with love and support from your good mates here on HVJ. Will write again hopefully this time next week!
Warmest wishes
Penny

Hi Steven
Just read what your fellow Canadian, Cheryl had to say. I'd be upset also if I were Canadian. Just wanted to comment on what your family doctor suggested (keeping a journal). When we get busy with our lives we can easily lose track of things (speaking for myself). writing it down should make it easier for you and your doctor to understand.
Fran Zilko

Hi Steven

How are you keeping? Just checking up on you and thought I'd sound off about Premier Williams (Nfld) going to Miami for mitral valve surgery. The details were in our paper this morning and I am one Canadian pretty darned upset by this.

While I don't have many complaints about our health care I find it really ignorant of a premier to feel he would get better care south of the border. Not that it might not be true, but if this is what our government provides for us through our provinces, then what's good for me should absolutely be good for him.

I had my mitral valve repaired in Toronto by Dr. David Latter, a very fine doctor and I'm still here to write about it. Mr. Williams said "I did not sign away my right to get the best possible health care for myself when I entered politics." That is quite a statement and I certainly hope his voters show their appreciation of this guy at election time. He even went on to say he may have been perceived as jumping the line or waiting list - what line - what list? I went through the tests and scheduling was done for the next month. He said his decision to go south did not reflect any lack of faith in his own pronvince's health-care system - I say bull.

He said his surgery was a very specialized type of surgery and he wanted someone who does it 3-4 times a day, 5-6 days a week. That just says so much. At the Ottawa hospital they perform about 150 mitral valve repairs a year (the people in the States must be rolling their eyes at that figure).

Get this - "the premier also said he paid for the treatment but added he would seek any refunds he would be eligible for in Canada".

I'm just insensed about this guy. Now, did any of this raise your pulse rate?

Have a good day. Thanks for being a Canadian sounding board for two minutes. I feel better.

Cheryl, Ontario

Hi Steve
Thank you for posting in my journal. Did a little research to find you. You have a very compelling story to tell. Read the journal notes from others and you have been given lots of great advice so I won't add my 2 cents. A really good thing you have going for you is that except for your heart you are in great physical condition. Imagine that will help you greatly with your recovery.I have signed up to get your journal. Keep posting.
Fran Zilko
I have si

Hi Steven!

Like you, I was extremely active and a runner (though I didn't hold a candle to you) when I found out October 21 that I had a heart murmur. It was at a routine physical and that was my first clue. No real symptoms, though in retrospect I can identify some palpitations. But I could run 7 miles without any difficulty. And when my cardiologist put me through a stress echo test, I nailed it. No problems. I still had severe mitral valve prolapse with severe regurgitation. My cardiologist suggested "watchful waiting" at 6-month intervals, essential until my heart was damaged enough or I was more symptomatic to warrant surgery. That was when I sought a second opinion from the surgeon who eventually did my surgery. I know our health care systems are entirely different, but as much as it applies to you, I recommend: 1. a second opinion. 2. having copies of your own diagnostic tests so you can know the severity for yourself. If "watchful waiting" is indeed appropriate for you, I can relate about the frustration of having something like this hanging over your head indefinitely. My journey from 1st diagnosis to surgery was just over 3 months. I'm glad to have it behind me. But many patients have known of their valve issues for years before surgery. May God give you His peace and wisdom as you continue to move forward.

All the best from Florida.

Duane Hunt

I am not writing a journal but am learning of other's experiences through reading of their journey. I was diagnosed with congenital biscupid aorta valve stenosis and my cardiologist told me recently I would eventually need open heart surgery to replace the aorta valve . I was always active and I hate to admit this but the news psychologically has impacted me to the point I am now fearful of exercising.
I do not like how I am reacting and know I need to continue to exercise in moderation -at least 4 times a week. I was doing aerobics, light weight lifting, spinning, and walking-nothing like you were doing-the long runs.
However, I can really relate to how you are feeling- the unknown of when you will have to do this-it is like something you are now always aware of. Do you think the upcoming tests will give you an idea when you will need surgery-soon or several years from now? What tests will you be taking? So far, I have only EKG, echocardigram, and SPECT nuclear stress tests. I do not see how these can be so definitive to determine I need valve replacement. My aorta valve opening is at 1.2cm. presently and I do not have many symptoms-except the enormous psychological impact of not knowing. Good luck to you and I will be interested in how they determine since you are very active and have few symptoms when surgery is necessary. Linda

Hi Steven,
I went for ten years with intermittent atrial fibrillation that followed no rhyme or reason, always corrected after a few days without meds and my cardio insisted that I had a trivial mitral valve leak that was really normal, just the sophisticated equipment magnified something that I really had no cause to worry about. I could always feel the AF both because of the strength of the erratic heart beat and because of the adrenlin surges that accompanied it. I stopped caffeine and alcohol - but once when I had an episode at Whistler a few years back we were at an Irish Pub on tha last night and I had an Irish coffee and lo my heart immediately went back to normal rhythmn! Because my heart rate is always around 135 in AF I didn't exercise during episodes and took baby asprin to help keep the blood flowing. The change happened in October when I started an AF episode (first in about 4 years)that didn't stop. My cardiologist (I can't bear to speak his name so will call him the idiot)kept telling me to wait and see, no need for panic. I felt my fitness declining after 10 days, with breathlessness getting worse and I developed a persistent cough. I was still trying to work but couldn't lie down to sleep because of the fluid build up in my lungs. 3 weeks later, with the idiot telling me that I was getting over anxious, I got my Steve to take me to A&E and was admitted with congestive heart failure and AF. The echo showed that the leak had increased but the idiot discharged me after 4 days with no further tests and said he wanted to see me in 4 months. That's when decided that I was never going back to him again. Several coincidences led me to my hero, Mr Frank Wells from Papworth Hospital. I sent him my echo on CD and he could see straight away that my one MV leaflet was calcified and asked me to go down to see him for tests, these confirmed that I need a valve replacement. The idiot had said I needn't even consider surgery for at least 5 years, but one of the cardiologists in Frank's team tells me that waiting for 5 years would probably have made me a candidate for a heart transplant. The point of this rambling is that in the meantime with duiretics to control the fluid retention and anti arrythmia drugs to try and rein in the AF, I experience the same symptoms as you right now. Exercise doesn't always make me out of breath, mmore likely I can be sitting in a chair or I wake up gasping and really short of breath. It has to be connected to the reduced oxygen flow to the heart. You will need a TEE and an angiogram. I didn't have these tests until I went to Papworth, although another cardiologist in Aberdeen Hospital had recommended that I have both of these back in November, but his request was over ridden by the idiot who said they weren't necessary. You know here I'm coming from here - I competely understand your frustration. Remember that you have the right to the best care possible, but you may have to search for it.
On the upbeat, thank you much for your kind words!
Warmest wishes
Penny (Scotland)

Hi Steve
Perhaps once you've completed all your tests you'll get the direction you are looking for. No knowing can really play on your mind. It's like waiting for that truck to get you from the back as opposed to watching it come at you. Gee, now there's some happy thoughts.

I wish I could give you some insight into why you can do some things that seem tiresome with no problem but get breathless just sitting but I couldn't even begin to second guess that. I just know that right up to a few months before my surgery I led a pretty full life and managed pretty good. I used to ask what to look for and the doctor always said "you'll know" and it did happen that way. Also, things have changed the way the doctors decide we are ready and I believe they are acting sooner rather than later now. Let's wait and see what the tests have to say - you won't be able to fool those machines.

From reading all these journals you shoud be able to come up with some questions you will want to know the answers to so make notes and start preparing for your interview. The questions I asked while undergoing testing were different than the questions I asked knowing I was definitely heading to surgery. Try jotting down just everything you want to know so you aren't guessing.

Keep us updated and hang in there. Praying for you. Cheryl, Ontario

Hi Steve
Just wanted to say hi and hope you are hanging in there okay. I hope you are learning lots from the journals and getting some ideas and questions together for your surgeon once you decide. I hated the idea of having to make any choices at all and thank goodness a repair was done and the choices didn't have to be used. It's such a huge responsibility. From reading what some have been reporting about the future of Warfarin, it puts that into a whole new light.

Take care.
Cheryl, Ontario

Hey Steve,
Thanks for the kind words you left on my guestbook. I re-read your journal entry and I think you feel exactly as I do. I have a feeling that the psychological impact is as big as the physical one. I don't know about you, but I know I sleep a lot less soundly when it's been a while after tests. I feel so much better just scheduling my echo. It's like my "symptoms" are disappearing. I'm still going to go through with the echo as the peace of mind is just the best thing in the world. I'll be following your updates.
Patrick in STL

Hi Steve

I looked up the Mazankowski Heart Institute and can see why you would be looking at that hospital for your surgery. I'd drive 3 1/2 hrs for that kind of care too. Now you just have to find the doctor. When I went to St. Mike's here in Toronto I was pointed to Dr. Latter who specializes in mitral valves. I liked him when I met him and didn't look any further. He made me feel very comfortable plus I had received a very good recommendation from a doctor we know so that helped greatly.

What tests are you waiting for - TEE and angiogram? From my angiogram and TEE at the end of July, I was scheduled for late September for surgery. It ended up being Oct 1 because I got sick but once your tests are done, I imagine you'll get a date and then know where you're headed.

Cheryl, Ontario

Hi Steve
Thank you for posting in my guestbook. I wish you and your wife a Happy Valentine's Day. I found it had a special meaning to me this year in more ways than one.

Gee, that's quite a drive you have ahead of you to get to your surgery. You'll definitely have to make some good plans for your return trip when the time comes. There are so many things to think of. Don't forget you can claim travel expenses for income tax purposes.

Dr. Gillinov said the Ross method has fallen out of favour with some as there is something else that has replaced it. You might want to double check on that. Obviously you have been doing some research on what you want done and if you need the information before Dr. Gillinov's transcript comes out, you might want to correspond with Adam and see what he has to say. In the end though, you'll have to see what your surgeon thinks because you'll want him to be VERY comfortable doing whatever it is that gets decided upon.

When my surgeon asked me what valve I wanted should a repair not work out, I threw the question back to him for his suggestion so I could see what he was suggesting and then I weighed it from there.

Do you have much snow out there? Southern Ontario has just been awarded one of the best winters yet as far as I'm concerned. We had a little dropping of snow last evening and it was all gone this morning. Love it. Love it. Our snowblower is sitting in the garage all filled and ready to go and hasn't been used once this year. Six more weeks to go and then spring. We warmed up a bit today - 0C or 32F. I used to ski but haven't for a few years.

Keep in touch.
Cheryl, Ontario

I also recently found out I have bicuspid aorta valve stenosis. My valve opening is currently at 1.2cm and my gradient peak is at 26mmHg. I know that I will not need surgery now but will in the future. I do have extreme dizziness. What is your valve opening and peak gradient at this time? I am also athletic but have seen a change in my energy level. I wish you lots of luck with your upcoming surgery.

Hi Steven,
You have gone mighty quiet on your journal so take it no results yet? Thanks for your tip - for keeping warm here, I have hooked out my old thick wooley ponchos (they came back as a fashion statement in Scotland about 5 years ago) and a huge tartan plaid that I only usually wear on Burns Night. Our central heating system is great and we have a big wood burner in the lounge - I plan to position my recliner just along the side. My cardiologist has said that he would expect me to return to full fitness. I have set my goal for Valentines next year that I will be able to hill climb for 4 hours without getting breathless and do 20 full body press ups. That for me would be a return to full fitness as I was pre Oct 09. It will give me something to focus on and a 6 month training programme to plan for. Our business is health and fitness so I have no excuse! Stay in touch, warmest wishes from Penny (Scotland)

Steven, thanks for posting to my guestbook. We are the same age; I turn 51 next month. And, though, I have been highly active, I didn't hold a candle to your 70-mile weeks. I maybe ran 20+ miles a week. I miss it. Maybe one day I'll be back on track. I really love to take big hikes in the mountains; hoping that will be restored. Sounds like you don't have a surgery scheduled yet. I have signed up for your updates. Keep in touch, and I pray you will have a good outcome.

Duane Hunt, Florida

Hi Steve
Not to worry about missing the chat. Adam is going to have the transcript posted as soon as it is available which should be a couple of weeks. I think you'll find it really interesting and hopefully help you make your decision. Dr. Gillinov talks about the proposed ease of a resurgery and my one big question would be if our doctors here know how to do the same procedures with such ease. We are a smaller population so naturally our doctors can't be expected to do as many surgeries. I doubt very much you can go outside your province for medical care so you have to find the best one there. If he doesn't think a reoperation is easy, then you are looking at a mechanical valve. This is a tough decision to have to make.

I was asked to try a new annuloplasty ring that was in trials in Canada. 200 Canada-wide had to be implanted before it would be available for general use in Canada. Three hospitals were in the study - one in Halifax, my hospital in Toronto and one out west. The study had only 2 months left of its two year run so when I asked how many were implanted in Canada, only 40 in total. I asked how many had my hospital put in - NONE. My decision was made. The States had implanted 650 already and the ring was being used there. I just was too chicken to be the first for my surgeon/hospital. Makes you think.

When do you think you are headed for surgery? How much time do you have in which to get your facts? If I can help with any research, I'll do what I can. Just let me know. Cheryl, Ontario

Hi Steve
Did you manage to sit in on the chat with Dr. Gillinov? I came away totally rethinking the tissue value situation and ended up being more for it than I was previously. I was lucky in that the doctor managed to repair mine. I still have a wee leak, but nothing near what it was. I'm disappointed I'm not totally fixed but I suppose the doctors think I only have so many more years to live so this will probably do me. My surgeon recommended a mechanical valve because of my age, saying he didn't want to see me have a resurgery because of a tissue value. But, after listening to Dr. Gillinov, I would reconsider.

Do you have a good lot of surgeon's to shop from in Alberta without getting another's nose out of joint? If you do, I would research my doctors and see what they have to say. Dr. Gillinov even said he wouldn't hesitate at putting a tissue valve in children because of their active lifestyle.

Getting tested for the INR isn't that big a deal, but it's time out of your day. There is a machine much like a diabetic's machine that can measure your INR. If I was going to be on Warfarin for much longer, I wouldn't hesitate at buying one. They can't be that expensive. You still need to let the doctor know the readings and every now and then show up at the clinic for a proper blood test though.

Cheryl, Ontario

Hi Steve
Been there. Done that and more than once. I went first class though - by ambulances. I even got plucked off one of the major highways in Ontario. I'm surprised I'm still married. My husband is just the best. Once, when the attendants came to the house they ended up being associates of my husband and no way where they checking my heart! I could have died of embarassment. It was after that last episode I started seeing a cardiologist on a regular basis - finally! Maybe Adam should have a "most embarassing moment" section. Heart palpitations do funny things and once you start getting the pains to boot, what do you do? It takes getting a diagnosis to begin to live with this while you are waiting to get worse. It's good you an laugh at yourself. You are among friends here. Good luck with your tests. Cheryl, Ontario

Hey Steven! I can so relate to your experiences. Luckily, I do have a good cardiologist; it's his nurse that I have an issue with. She & I have had a "come to Jesus" talk & she now knows that when I call, she'd better acknowledge me ASAP.
Only you can know what you are feeling, and if something's not right, you have every right to find out why. Keep looking & find a doctor that will listen to you and help you. I had to do that with my psychiatrist and am still looking for a good one.
You are not an idiot! You are just aware of your body, and that awareness will serve you well.
I'll follow your updates as we musicians should stick together!
Kathy

Hi Steven,
You are not an idiot and you have no reason to feel apologetic! You know your body and when somthing if off kilter. It's like your car engine, you wouldn't accept a mechanic saying that all was ok when you instinctively feel a shudder or misfire or loss of power. Get a 2nd opinion from a recommended cardiologist to find the cause of your symptoms - I started to feel neurotic when both my GP and my cardiologist kept telling me that my lungs were clear of fluid and that there was no reason for breathlessness. It was only after I admitted myself as an emergency that a chest x-ray confirmed significant fluid build in the lungs and legs and that I was in congestive heart failure. My (ex) cardiologist still didn't see the need for any further tests but upped my medication and wanted to see me again in 4 months. That's when I found this website and Adams book and the confirmation that I needed to seek out the best that the UK could offer. You deserve the best quality of life - fight for it!
Warmest wishes Penny