10 years since I got my valve.

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Caitlin

VR.org Supporter
Supporting Member
Joined
Apr 5, 2008
Messages
25
Location
In Pima County, near Tucson AZ in the heart of the
I meant to come over here on my actual anniversary, but forgot until I saw a website somewhere with people asking the most simple questions about warfarin. I made a post about how I found you guys in 2003 when I first learned I would need a new valve. I was already on warfarin for A-fib -and because I studied this site, I obtained a warfarin home testing device by 2004-5. I didn't get the valve until 2006 and by then I was thoroughly educated in every aspect of going through this operation.

I must give thanks to this community and especially, Nancy who is/was one of the best forum members I ever encountered in any forum. If I mention people, I must mention Ross was the best moderator on any forum I have ever visited and I have even been a mod/admin myself on -Pearl-Guide.com for 12 years. I'll never have his sense of humor, which was a major attraction for me when I was SO frightened. I guess the forum being here might mean that Hank is no longer involved? He was always so dedicated to this forum, I hope he is still the boss. Anyway, I am here today to express gratitude to this forum for doing its job so well, educating me, and countless others, on the scariest operation you can dream of- open heart surgery. Nancy told me it was a "perfected operation". That is, the techniques doctors use do their job and keep the patient alive work- unless there is something other than the valve operation itself going on- there is a fantastic likelihood of surviving. I swear, I was almost fearless when I went under the knife and that was a huge differance for me. I was so scared when I arrived here!!!.

Back to the warfarin post I made yesterday on the fly- I recommended people who are all upset over taking warfarin look up Al Lodwick and visit over here, because taking warfarin is not that different from testing for diabetes, A home testing machine makes the difference in taking charge of your own INR. Al really conveyed a lack of fear regarding this medication that has stood me well for 14 years. I love my home testing device, which has worked on the same 6 batteries since 2005!!! Now I have to give it back and get another one, so i may post on that topic soon.

I am so happy I found you and got my own home tester. I feel sad about people who don't get a complete warfarin education from this site. I wish there was some way a-fibbers would routinely find this site too.
 
Congrats on 10 years! Nice work taking the knowledge outside these walls.

I recall older threads lamenting this being a perceived "aortic valve" only community - but your post shows how many of our issues can expand to other medical concerns.
 
Caitlin;n871116 said:
............ I guess the forum being here might mean that Hank is no longer involved? He was always so dedicated to this forum, I hope he is still the boss. Anyway, I am here today to express gratitude to this forum for doing its job so well, educating me, and countless others, on the scariest operation you can dream of- open heart surgery.


Hank continues to own and manage this forum. We went from a .com to a .org several years ago. If you didn't know, Ross passed away a few years ago and Nancy has not posted for some time.

Congratulations on your first decade.......and I wish you many more.
 
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Congratulations on 10 year anniversary! Great story you have and encouraging as I just started on warfarin last month (second AVR in less than 5 years, mechanical this time)
Enjoy each day!!!!
 
Thank you all for your kind responses. I wrote that on the fly, not realizing that my tricuspid valve is starting to leak badly enough that I fainted upon walking uphill a bit on January 3rd, 2017. It took a second episode of syncope May 1 to get the echo that revealed the tricuspid leak and reason for the other more minor symptoms. I have already had my chest cut open twice and I am not looking forward to doing that again! Fortunately, I probably have some time....

So, I think you may find me over here more often than in the last 10 years!

Hugs to Hank for persevering!!!

One more thing. In the second episode of syncope, I seem to have let my head drop back and squeezed the c3,c4,c5 vertebrae and cut off the nerves to my right ear, so I was almost deaf when I woke up. The hearing is still going away even I take their scary prednisone and follow all instructions. So online forums may be one of my only ways to connect with people. I was already deaf in the left ear though that one took 30 years to fade away completely.

Some of the original valvereplacement.com folks still meet for lunch every Tuesday like azpam and others. The group has evolved but Joanie, Pam, and I are still hanging in.

I am so happy I have this place to come back to. I am so overwhelmed right now.
 
Caitlin;n876230 said:
Thank you all for your kind responses. I wrote that on the fly, not realizing that my tricuspid valve is starting to leak badly enough that I fainted upon walking uphill a bit on January 3rd, 2017. It took a second episode of syncope May 1 to get the echo that revealed the tricuspid leak and reason for the other more minor symptoms. I have already had my chest cut open twice and I am not looking forward to doing that again! Fortunately, I probably have some time....

So, I think you may find me over here more often than in the last 10 years!

Hugs to Hank for persevering!!!

One more thing. In the second episode of syncope, I seem to have let my head drop back and squeezed the c3,c4,c5 vertebrae and cut off the nerves to my right ear, so I was almost deaf when I woke up. The hearing is still going away even I take their scary prednisone and follow all instructions. So online forums may be one of my only ways to connect with people. I was already deaf in the left ear though that one took 30 years to fade away completely.

Some of the original valvereplacement.com folks still meet for lunch every Tuesday like azpam and others. The group has evolved but Joanie, Pam, and I are still hanging in.

I am so happy I have this place to come back to. I am so overwhelmed right now.

So sorry to read that you will need to undergo surgery on your tricuspid valve and the nerve damage you suffered during the syncope episode. However the forum is still here for support and information, and that is one thing which seems to be constant. I'm glad to see you back but wish it were under different circumstances. Mary
 
Caitlin,
First, Congratulations on 10 years!
Second, I was amazed to see you mention azpam and realize you must be part of the Tucson group! I met the group for lunch years ago when we lived in Virginia and were vacationing in Tucson. You have certainly been low-profile here (though I admit I'm don't frequent the forum like I used to).

Good luck in your upcoming surgery.
 
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