On February 13, 2011...
Thanks for the very well written entry. I have a brother who suffered with ptss from Vietnam and only sought help 5 years ago. It has made a big difference in his life. Stay healthy.
Fran
On February 12, 2011...
Thanks Terry. FYI I'm a Chase on my mother's side. Grandfather was William Chase, Veteran of 1st World War. He was wounded; they gave him a brass windpipe. He passed away a few months before I was born.

Keep the faith and thanks for remembering me,

Paul
On February 12, 2011...
Hi Terry,
That's a great point about not knowing when someone comments in our guestbook. I'm glad to hear you're doing so well. You're a real inspiration. I cannot imagine a day without fatigue, but I am soooooo looking forward to it.
Ruth Howell
On February 12, 2011...
Hi Terry,

Thanks for your note.

Great ideas.

This week we will embed the email notification response system for people wishing to be notified of your guestbook replies.

As for fictious people on the network, that is, unfortunately, impossible to stop. As you know, the Internet is known for its blatant anonymity -- which often translates into spam on this or any system. Although you may not be aware of it, our system already has several spam filters in it but that does not stop the occassional offender. That is why we created the "Delete Guestbook Entry" function for all users in their control panel.

FYI, we will be rolling out several more features for Heart Valve Journals soon. I'm doing as much as I can considering I have a wife, a son, a job and a very limited budget for this work.

I hope this helps.

Best regards,
Adam

On February 11, 2011...
Terry, thank you so much for the word of incouragement and knowledge. As of right now I am looking toward the tissue valve. it seems to be the best thing for me. Being only 40 I am hoping it last 20 years. I think the scariest thing for me is my children and husband being left alone. I am a stayhome mom and my life revolves around them hand and foot. I know the dr. has to tell you the risk but when he said I could have a stroke during surgery or bleed out the thought of not seeing them again scares me to death. I know that I am not rushing to get this over with but at times it feels like it. Do these feelings ever get easier or go away? I know I have to keep my blood pressure down and remain stress free but that is kind of hard, don't you think?
On February 11, 2011...
Hi Terry


this is the time-travelling atheist waiting for a sucessfull mitral valve repair, because I liked the experience so much I come back and relive it.


I've seen you 100 years from now; and the only thing left of your present self is your head, everything else is prosthetics - you've become an avid trans-humanist - same with Ruth.


cheers!

On February 7, 2011...
Hi again,

You mentioned in your most recent "One of the things that people in Canada don't realize is that anyone in the US can go into an emergency room and receive treatment."

We have been aware of that personally for some time as our daughter and son in law have been living in Indiana since 2003, as well as we have close friends in Minneapolis with a larger family and low income.

So there are state laws and benefits and well as what I would call the "mercy law", which is like you said, anyone can go anywhere and get treatment insured or not, especially if the condition warrants it. This cost is passed on to those with Insurance Coverage as I understand it.

Our daughter and son in law, while non Americans, had their delivery covered as they are both residents of Indiana and our little Jack is their "anchor child" obviously, and while they both attend Notre Dame, their stipend(s) do not push them over the affordability thresh hold.

In Canada insurance is just not an issue. You break a leg, walk into emergency and they fix you up, case closed. We have what are called walk in clinics for people with lower level chronic issues, such as congestive disorders, e.g.,. asthma, or just common cold, young or old it doesn't matter; you wait the 2 or 3 hours, see a Dr, get your prescription and away you go.

In our country, when hen it comes to life threatening long term issues people with cash ditch to the US to avoid the waiting time. Even if I could liquidate the cash I’d be wiped out for the duration. See

http://www.valvereplacement.org/forums/showthread.php?9307-The-bottom-line-cost-of-surgery-and-hospitalization

for total costs ($105,000-$110,000). So for me there is not other option, and I’m OK with the waiting because I just happen to believe that SomeOne else is in control of my journey and can intervene at any time and trump the plans of systems of mere mortals.

Just another note on Health Insurance in the US. My wife’s cousin married a fellow from Florida. They had premature twins at I think about 5 months. The insurance company was paying through the nose. I’ll just make a quote from the foregoing link as follows. Just to take off on that for a moment they found out the hard way that:

"By nature, Insurance Companies do their very best to pay as little as possible and even weasel out of things that are legitimately their responsibility to pay to start with. They typically only pay roughly 1/2-2/3 of the billed amount, and try to make people fall for the game of feeling responsible for the rest. Becoming a real pain in there sides is part of the game, by appealing, appealing and appealing.

First thing, always, is to get an itemized copy of your bill for everything for everyday. There will be all sorts of mistakes and most likely even some bogus charges on it. Make the hospital answer everything to question. A lot of the nonsense will get eliminated here which will leave the raw amount for the insurer to cover.And NEVER take anything at face value. Question everything and everyone."

Back to the family, their Insurance Company finally after a few months cut them off. Full stop. Apparently there is a federal or state law that essential gives the Insurer this right to terminate coverage should it be deemed that coverage of the insured will eminently place the insurer in a place of impending financial ruin. The bill, incidentally, had run into the 7 digit category by this time.

But as I mentioned previously, there is the “mercy” aspect to your system. The parents were trained in all the aspects of care giving. The hospital loaned them all the equipment. A highly trained nurse was scheduled daily to come and see how they were doing at no cost.

As a Florida resident you are the authority on the foregoing, what I’ve shared is probably
probably incomplete at best and no doubt inaccurate.

That about does it for today,

Cheers,
Paul
On February 6, 2011...
Hi Terry,

So glad you took the time to get back to "the right person". Every story is so unique and yet so similar in so many ways, so each one of us can write our own book.

Yours is what I would call "not unusual", in the sense that when we're healthy and take special attention to keeping healthy, our reaction is pretty predictable. Like you say, when we find out we're not superhuman after all it’s a tough pill.

I'm sure you read my story, born with bicuspid aortic, never noticed anything all my life. The off time when I'd go for a routine checkup the Dr would mention something about a "murmur". One time he let me listen to it. He called it the trumpet valve. There was no tricuspid "duh doon" sound, it was just a "whump, whump, whump". The as it calcified it started sounding like a buzz saw. much like the lips of someone playing a trumpet, except it takes 4 - 5 times the effort to blow a trumpet than to just breathe through nearly closed lips.

You are correct in saying that if you're in cardiac distress or arrest in Canada you go straight to merg and they start dialing the team as they get ready for the op. The difference otherwise is a little different than I perceive your perception to be, which is not to be unexpected.

In Canada we don't pay health insurance. That means that if you live on the streets or in high society, a heart is a heart, and in socialism you get treated as a number, more than you do an individual human being.

Now we both know that socio economics play a BIG role in individual health stats. And we both know that the "lower" echelons of society and others for that matter, have health issues and habits that by enlarge lead to cardiac problems.

So in socialism you have no option as to how the system deals with you. For example, they have given me to 2012 with my condition. That means that I am a perfect "shuttle buffer" for the system. No matter where I might be in some imaginary order of priority, someone can come along that is worse off than me, which means that I get could be shuttled to the back of the bus.

In my current condition, there are enormous life style changes that we are still adapting to. Let's just say that such things as conjugal relations (there, I said it for the whole planet to read!) are enormously effected. Can you imagine the impact that this has on a relationship.

We're in our 40th year but we were both child bride and groom, so our love we know is strong enough to withstand anything, which we attribute to our faith.

There is hardly anything I couldn't do a year ago that hasn't been seriously impacted. Today, for example, I cooked supper and fixed a shelf. Oh, and walked a block and a half to the corner store to get some groceries.

I'm not complaining, God has done miracles in my life to enable me to accept these limitations and still cultivate an "attitude of gratitude". But how do I keep myself in shape, with some degree of physical strength and conditioning?

I can walk very slowly and spend about an hour a day stretching, if I go beyond that I start to look like one of the pictures in my photo gallery and then my love gets worried. So we are constantly adjusting and refining with great detail how to relate and stay close during this time. What keeps us going, again, is our faith and friends.

On a bit of a different note, I notice that my heart is "happier", I mean my literal physical heart, when I am with people that know and love me and reciprocally obviously as well.

I've run on by far long enough for now, but I will add a picture of "when we were young" on my photo page. In retrospect these things happen in one way or another to everyone on the planet (1 out or 1 people pass away) and they can be helpful in reminding us of our mortality and hopefully in preparing us for the place where we will spend immortality, my own hope being in the Man from Galilee, through whom I live in Peace.

Great chatting with you Terry.

God bless you,

Paul (thumper) ....which I tried to avoid but in closing I must say I have found that a cardiac journey is a journey of the heart!
On February 6, 2011...
Hi again,

oops...you can find me at

http://www.heart-valve-surgery.com/journals/user/paulmcleod#

cheers,

thumper
On February 6, 2011...
Hi Terry,

I apologize for not signing your guest book. Your use of the code word "thumper" seals the connection in my mind. It would be an honor to dialogue with you.

I'm long winded so I'll keep this short.

Cheers and all the best to you, fellow valued wayfarer on our parallel journeys.
On February 5, 2011...
Hi...I'm wondering if you're the Terry C journaling with Darren from PEI. I'm the thumper on his page, always bringing the focus to God (except I use hopefully politically correct nuances?!). In Canada you have to be careful.

I lived in the US for a couple of years, grew up along the border and have 3 siblings, sister in law, nephews, that are American or USA/CDN dual citizens and a grandson that's 51 Stars and Stripes American. So I hope I'm on safer ground with you in Florida.

I really am interested in the science part of all the cardio stuff being trained as a scientist. As I grew older I discovered the wholistic approach to health, I'm not against Yoga or New Age, etc, but for my own journey I don't think I'd be where I am now without this wholistic approach as well as the most iportant ingredient which is my faith along with a whole army of people praying for me from all over Canada and the US as well as Asia, (Here I'm thumpin' again.)

I wanted to tie into the thread that you were talking to Darren about as per the misconceptions as to what constitutes heart wellness of illness. For myself, when i had the angi gram the staff were very intrigued when they got the results and after a lot internal discussion announced to ne that I had the heart of a much younger man,

If you read my journals, warning, they're lengthy, I try to explain my frustratiion of living with a perfectly healthy heart and a bad congenital bicuspid aortic valve with acute stenosis. Obviously, as a non emminent event candidate, I'm the perfect patient to shuffle, as in no specific date. On the 50% mortality graph I'm supposed to last until late 2012. That would drive a lot of people crazy and it did give me my monets, but when I abandoned that part of the journey to God it sort of simmered down to next to nothing.

Hope this resonates with you. My wife and I are waiting to get me fixed up so she can accept an offer to work in the US. She graduated form St Cloud State MN.

All the best again to you.

All the best to you and God Bless America
Terry Chase  Hi, yes, I'm the Terry C on Darren's list. You didn't give your name or initials, so I'll have to search for you. I'll post there if I can find you.
Terry
On January 28, 2011...
Hi Terry
Yes, it's pretty amazing the changes that are to come. Dr Gillinov (Cleveland Clinic) told me if the time comes that I would need a replacement valve that it would be done the way you described in your note. I hope I outlive my bovine valve, but it's good to know that's what ahead.

Fran
On January 25, 2011...
Hi Terry,
It's so good to hear that you're feeling well. Keep up the good work. I also hope that your kidney-related issues have resolved or are in the process of improving. My best wishes to you for your continued recovery. What an inspiration! Ruth
On January 25, 2011...
Hi Terry!

4 months! Congratulations! Isn't it amazing how much better you feel in such a short time?

Go out and celebrate!
Ricki
Terry Chase  Ricki:
Thankis for the good wishes. It is quite amazing, isn't it? I've watched your progress as well. Next milestone--6 months.
Terry C
On January 24, 2011...
Hi Terry
Hope all went well with your appointment with the kidney specialist. You haven't mentioned anything about it. Glad you're feeling so well.
Fran
On January 17, 2011...
Hi Terry,

I received a few notes about that email. Last night, I went ahead and deleted them from the system.

Over the next few days, we will be adding another layer of spam blocking tools to prevent future occurrences.

Sorry about that!
Adam Pick
On January 17, 2011...
Hi Terry,
How weird that you had that issue with the posting? I also had an unusual contact made....looks like this is a very well maintained website, because the unwelcomed posts were removed immediately.
I wanted to let you now too that I was going over my guestbook and realized that I never followed up with you regarding the size of my incision. I know I said mine was supposed to be 3", but it is actually about 4 1/2 or 5. I never really asked if that was a misunderstainding on my part or if a last minute judgement was made during surgery. Whatever the case, it's no biggee; I'm feeling good and had no issues with my recovery which is way more important!!
Sorry you had that upsetting experience; you are such a wonderful person.
Have a great day,
Nancy H.
On January 14, 2011...
Terry,
I am interested in the article you mentioned related to kidneys and the heart.
While I have 2 kidneys, I am struggling with controling my high blood pressure. My cardiologist believes that this is no longer because of the surgery. He said high BP is also related to functioning of your kidneys.
Can you send me a link to the article or the title and author so I can find it.
My personal e-mail is aszalony@comcast.net
Glad to hear you are feeling some relief. You certainly have had your fill of medical challenges.
You have a wonderful spirit and I admire the positive, honost thoughts you always share with others on HVJ.
Thanks
Amy Szalony
On January 12, 2011...
Hi Terry,
How are you feeling and how are you making out with your kidney-related problems. I do hope that has all resolved for you.
Ruth Howell
On January 11, 2011...
Hi Terry!

Sorry to hear about your kidney problem. I still have the original issue 2 kidneys, but I think you're probably right that some of your heart meds are the cause. I had some liver issues more than 20 years ago with completely normal liver function ever since UNTIL surgery and now my liver is somewhat wonky again. I'm sure it's the meds. Hopefully your doctors can work together to find a good balance between kidney and heart health.

Thanks for the nice comments about my picture. That was at Ron and my wedding in June 2009. Less than a year later, I was in surgery. I told him the warranty was still in place and he could trade me in but, sweet guy that he is, he refused!

I hope they get your kidney back to normal soon.
Ricki
On January 9, 2011...
Terry,
Great photos. What a beautiful family. My best wishes to you for your continued excellent recovery. And thank you for sharing your experience.
Ruth Howell
On January 9, 2011...
Terry,
Great photos and best wishes for your continued recovery. And thank you for sharing your experience. Ruth Howell
On January 7, 2011...
Terry, your 3 month report is quite uplifting for me. It seems like forever from now, but at least I know it is out there and promising. I had/have all of the things you mentioned that your doctor said will heal over time. Chris Kinney
On January 6, 2011...
What a beautiful family! They are a blessing...you are all lucky to be near each other and enjoying life together.
Happy Birthday to all!
Nancy H.
On January 6, 2011...
Thanks for sharing the neat photo. I have 6 brothers and one sister and love them all.
Fran
On January 5, 2011...
Hi Terry

What good news from your doctor and what good progress you have made, well done! Keep writing in your journal because it gives those of us who are still in 'waiting mode' a positive message to hang on to. I look forward to hearing more from you.

Audrey Meyer
On January 5, 2011...
Terry,

Great news! Good for you, and what a nice way to start the new year.

Jim A.
On January 5, 2011...
Hi Terry--
Congratulations on the greaat report and thanks so much for enlightening all of us! I never knew any of that!! 5 years!! That's amazing.....I am counting the days until my 6 months!!!! That puts me somewhere
around May 30th.....very nice :-)
Nancy H.
On January 5, 2011...
Hi Terry!

Great news! It's true . . . I felt much better at 6 months than at 3 (and I thought I felt terrific at 3!) I'm glad you're doing so well. It will be nice when we forget about our hearts altogether!

Have a great 2011!
Ricki
On January 5, 2011...
Good Morning
Great visit for you and super news you shared about our hearts. Who knew, my cardio certainly didn't tell me all that. A lot to look forward to.
Fran
On January 3, 2011...
Carpentier has also been working on a fully implantable artificial heart - the man never stops!

http://news.bbc.co.uk/2/hi/health/7694663.stm

I only have a vague date for my surgery - in about 6 months, but could be longer. But I'm fortunate my surgeon trained under Carpentier in Paris.
On January 2, 2011...
Hi Terry,

first, Happy New Year to you and yours!

As for my CT scan, I feel fine now. I'm allergic to shellfish (shrimp) so they gave me meds a day ahead of the scan - and since i'm already on several other meds ,I think a mild reaction was to be expected - in my case, I felt a bit dazed and depressed for several days after the scan. But I feel fine now, thanks. ;,)

pete


On December 30, 2010...
Terry, thank you for all of your good advice and words of encouragement. Chris Kinney
On December 29, 2010...
Terry

Your journal and info have been most encouraging since I'm only into week 5.
I just planned a trip for the end of Jan to Barbados so from what you say - I hope to be in shape (not literally) to go.
For your scar try mederma and vitamin e. It may be my imagination but I think it does help.
Happy holidays

Diane P
On December 25, 2010...
Terry,

Great to hear all is going so well with you!

Happy Holidays!

Keep on tickin!
Adam
On December 18, 2010...
Hi Terry,

Congrats on a successful surgery and welcome to the zipper club. My scar is one year old and it is almost undetectable on the top half, but the bottom half is pink and a little raised. I guess I should have used Vitamin E on it. I just call it my badge of honor and proud of it.

All the best and on to a full recovery!

Happy Holidays!

Thomas A Deakins
Farragut, TN.
AVR 12/15/09
On December 14, 2010...
Terry,
Thanks for the uplifting note. I am at my 2 week post op today and still hate taking showers and having to see myself. I still feel stiff and awkward in my own skin, but I do notice a big difference from lat week to this, so I look forward to next week and the week after that....!!
Thanks for thinking of all the rest of us; your updates and those like them are all we have to help us face each new day and try to plan for the future.
Warm Regards from chilly NJ,
Nancy H.
On December 10, 2010...
Hi Terry,

In a strange way, your adventures on Dec. 7 sound absolutely wonderful!
Obviously not the plumbing leak but how great it is to hear you have so much energy. I am looking forward to that day.

Amy S.
On December 8, 2010...
Good Morning Terry
What a day and you did it all. Great news. Hope you do have some occasional rest time. Increased stamina is one plus I've also found since my surgery. We are blessed with excellent doctors and amazing bodies.
Fran
On December 5, 2010...
Hi Terry
Glad you are doing so well. Curious to know
when does the aching pain in your chest go away - or doesn't it? I'm assuming its the knitting of every thing coming back together.

Diane P
On December 4, 2010...
Hi Terry
Very interesting!!! They must have a very low rate of hospital borne infections to remain in the hospital for 18 days. Here, I believe the attitude is get discharged as soon as all is well and get back to familiar surroundings to heal. Seems like too much "big brother" control to me.
Fran
On November 30, 2010...
Hi Terry

Im finally ready to acknowledge those who have been so supportive on this journal blog. Your words of encouragement were quite helpful and I look forward to reading and hearing more about your progress.

Sounds like you've got a lot to be thankful for.

Diane P
On November 29, 2010...
Hi Terry,

Thanks for writing in my journal. I wish I had been aware of you earlier. I would have liked to read your journal (I just read it all now), so we could have discussed things before and as they happened.

My stenosis was diagnosed very early by echocardiogram. They generally do an echo here as soon as a murmur is heard. A bicuspid valve is usually discovered early by the same method. But it doesn't sound like you had an echo done. Or maybe you just didn't mention it. But if you had one, I can't imagine they would have waited so long to do the cath angiogram.

Interesting that we both have some back pain, tho' it sounds like yours is lower back? I have had lower back problems for years, and was very concerned that the hospital stay and inability to do the exercises physiotherapists have given me for it would cause it to flare up. But unbelievably, the hospital beds followed by the recliner at home resulted in a totally painless back! Only now that I have begun sleeping in my bed again have I had some lower back pain. The pain the surgeon blamed on the sternum spreading is upper back.

I may consider tapering off of the beta blocker when I start competing in triathlons again. And thanks to you, I now know what is causing the occasional "head-swimming" (slight dizziness).

You have had an an exciting medical history. I am with you in giving God credit for getting you this far. It is comforting to know we are in His hands.

I'll be following your journal entries.

God bless!

Don
On November 27, 2010...
Hi Terry,
It's so encouraging to hear how well you are doing! It must be wonderful to have your life back.
I am sincerely sorry for the loss of your adorable kitty......I am a pet lover too and they really make a mark on us....very difficult to take when we lose them;
Thanks for still posting and letting us all know what life is like down the road after recovery.
Continued progress and I hope your back pain can be resolved for good.
Thanks,
Nancy H.
On November 25, 2010...
nice cat!

pete
On November 24, 2010...
Terry,
Thanks for sharing your little misjudgement with us all...I could see myself doing something like that!!!! Hearing it now will help remind me to behave!
That will be a real challenge---
Thanks for all your posts; they have been helpful in my preparation for next week.
Warm Regards,
Nancy H.
On November 20, 2010...
Terry:
Thanks for your good wishes. Yes. I lot more people have this common issue than I knew. But there are so many good options available.

The oompf will come back just stay with the program and remmber every day is a good day. TTake care and be an insipration to those of coming behind you.

Will R
On November 20, 2010...
Hi Terry
You are girl much like me, I believe. I also love to quilt and find it very relaxing. My newest project is a baby quilt for a new grandbaby due in May! Also make a donate baby quilts for a national organization that distributes them to local organizations and pediatric departments. They go to the abandoned babies, drug addicted babies, etc. Have been doing it for 25 years. Anyway, got off track--sounds like you've worked out a good schedule for yourself and it's working, keep it up.
Fran
On November 20, 2010...
Congradulations Terry!
I would say that is another step forward. (no pun intended)
I imagine the creative energy of quilting will also help.

Amy S.
On November 19, 2010...
Terry

I'm scheduled for Monday morning in NY - your journal made me aware of some things to be on the lookout for. Thank you
Diane P
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