An open letter to Pellicle and other generous contributors

[George in Denver]

Dear Pellicle,

Just a quick note to thank you for your extraordinary contributions to the community of folks (like me) who have faced or will face the vexing decision regarding valve choices; and to all those who must come to terms with a life on warfarin. My wife came across your blog and then your many helpful posts in the valve replacement.org forums while I was awaiting my second AVR procedure. First time, a porcine valve in November 2013, when I was 57 (Medtronic Mosaic, recommended by my surgeon in Denver, but which I’ve since come to learn is no longer used in many US hospitals owing to its uneven performance). That valve was already failing by this past spring (after just over 2 years of service). Cardiologists at the Mayo Clinic (where I went for a second opinion) urged me to choose the On-X this time around, and of course I was freaked by the idea of warfarin. Your posts helped us grow comfortable with and knowledgeable about that option. Now 5 weeks post surgery (performed at the Mayo), and both recovery and adjustment to warfarin have been entirely uneventful.

But to return to the point of this post: you have demonstrated such extraordinary, off-the-charts generosity in the efforts you’ve taken to educate and comfort those who badly need both—including me—during really vulnerable moments in their lives. I can only imagine the numbers of folks who have benefited owing to your contributions. On behalf of all those in that category, I just want to express our deepest appreciation. You’re a mensch! And thanks also to all the others who, like Pellicle, give so much of their time supporting all of us who have had to navigate the bewildering corridors of the cardiac industrial complex.

Be well,
George

 

[Faramacho]

I don't write on these forums to often, but I read them almost daily and I have to second George's compliments to ALL and to single out Pellicle. This is a very supportive group and I recommend this site to plenty of people I know seeking advice. To Pellicle, your knowledge base is only second to your generosity and giving of comfort and advice to those in need. Thank you for your time and generosity.

 

[QuincyRunner]

Ditto.....

 

[Seeker]

Ditto.......

 

[Trinalovescats]

I'm lucky to have found this site as well.

Not many people I know have had heart valve replacement.Most people are familiar with just bypass and stents.So this is an awesome community to be in and they give wonderful answers.

I just celebrated 5 months with MVR!!!!

 

[pellicle]

George

...
Just a quick note to thank you...
You’re a mensch! And thanks also to all the others

thankyou ... although I feel a little abashed at such kind words. I'm glad that my blog posts and my post here have done something to help you (and others).

I literally can't imagine what those who come late to AVR (or MVR) must feel, because I came into it from so young. What I can glimpse is the frustration and anxiety of being essentially abandoned at the gates of Warfarin and feeling very apprehensive ... much like Dante confronting "Lasciate ogne speranza, voi ch'intrate" at the gateway (in English Abandon all hope, ye who enter here.).

I spent a good year in my own torment in dealing with warfarin and all it entailed before I took the bull by the horns myself and was determined to wrangle it to success.

I know how liberating it feels to be once again the master of myself and not a subjugated patient waiting for the call to tell me my dose.

I have just sold my house (as you may have found on my blog) and in a few days will be travelling back to Finland. That I can self test makes this process and journey no more complicated than it is for any other normal person. Self testing and understanding the basics has enabled me to live my life with my new valve unshackled to a system to manage my medical needs... free to take as I need but not a captive to it.

Thank you also for teaching me a new word ... had never heard mensch before

If I may quote from my favourite Lewis Carroll poem:
"this amply repays all the wearisome days we have spent on the billowy ocean"

I wish you all the best for your recovery.

(PS I liken myself to the Butcher and my lovely wife to the Beaver in that tale)

 

[Agian]

You deserve it. You have a heart of gold.

 

[neil]

we argue like cat and dog pelli but as ive said before you are a good sort and defo help people,

 

[dornole]

All true. Pellicle, you should put this in your "I don't suck" folder for the next time you may feel down. You've really helped so many people here.

 

[dick0236]

I'd like to add my thanks to how Pellicle freely gives his knowledge on this forum. He has both the experience (multiple surgeries) and training (bio-med) necessary to add logic to a very scary concern. I went thru all of this back when information and support was virtually nonexistent to the patient and was lucky to make it thru with only one bad experience.......which probably would not have happened had I had better counsel......or any counsel.......regarding living with an artificial heart valve. Frankly, most physicians have little practical knowledge in dealing with anti-coagulation, especially in younger valve patients, since they represent only a small fraction of their patient list. There is a big difference in counseling a 35 or 55 year old valve patient and their usual 85 year old a-fib patient......yet they try to paint us all with the same brush. Educate yourself so you can look your doc in the eye when discussing your issues.....people like Pellicle can help give you that knowledge.

 

[Mellyouttaphase]

I would also personally like to thank pellicle. Thank you, pellicle and safe travels back to Finland!

 

[Nocturne]

I am still very new to all of this, and I barely know any of you, and I know that the path I feel compelled to walk here has pissed some people off, including Pellicle himself -- but even I have to nod in respect to the man, whose heart is clearly in the right place and who has clearly helped so many. And others too, dick0236 and more, who are sharing their experience and insights.

Pellicle, it is interesting to read your thoughts about your perspective regarding people who come to AS and VR later in life.

 

[Warrick]

Big thanks!!!

 

[epstns]

Well, let me add yet another dimension here. Not only is pellicle a wonderful resource here, but he is a really good friend to those of us in need of an understanding "shoulder to lean on" when things get tough. He actually has a softer side, which he sometimes hides, but he is always there for all of us, both on vr.org and off.

Thanks, mate!

 

[LondonAndy]

What a nice posting by George, and one I wholeheartedly agree with. I am a comparative newcomer myself, at two years, and although my hospital (the London Heart Hospital) was excellent at providing useful information, I have certainly learnt a great deal here post-surgery. Others too have been generous with their help and guidance of course, but I hope one day to be able to buy Pellicle in particular a pint or two for the graphs, research and analysis he has shared with us!