Hi, New Memberb

[Agian]

Of course! If it's a mitral valve it's a TMVR, not a TAVI. I am inspired by all these developments.

 

[OzChrissy]

It is so exciting to speak to people who are aware of the consequences of my procedure. To answer some questions, Dornole, I doubt that I am the person mention in the report, I only got my valve on the 28th Sept 2015, so I doubt that I would be the person mentioned. Also, and I think it is a problem with the report, the only team that does the TWELVE valve in Australia is the Alfred team, not the Monash Team. It is a confusing report as I was originally encouraged by the Monash Team to get the MItral Clip only and it was the Alfred Hospital that offered me the full valve replacement.

It is very hard to get information on the actual procedure on the internet for me to share, but I will try to explain it as much as I can, and you will see why it is so revolutionary, but also makes so much sense. The first and biggest thing to me is to realize that this procedure is done on my heart whilst it is beating. I look at my closed fist and realize that is the size of the moving muscle that they work on. Mind boggling. Of course, as you can see by the video, there is pretty heavy monitoring going on. Besides all the external monitoring, there are also two echo specialists working hard. I had a TOE or TEE down my oesophagus, I had another external echocardiagram as well. I had probes from my aorta in my neck and also from my groin also monitoring me. LUCKILY I WAS UNDER ANESTHESIA.

An incision was made below my left breast, a part of my rib was removed exposing my heart cavity, enough so that a catheter was able to be inserted. They entered my heart through the apex of my left ventricle. They then maneuvered the catheter which contained the valve to my existing mitral valve. The valve set up is a metal sheath, like a stent on the outside and inside was a bovine valve. With my heart still beating, the doctors then opened the valve up and it attached to my existing mitral valve. The metal outside of the valve casing embedded in the existing mitral valve and replaced it. With my subsequent echo's, you can see the new valve opening and closing beautifully, but also the damaged leafs of the damaged mitral valve flopping around behind it. I was amazed at my first echo, I couldn't work out where my mitral valve was, as I was so used to see the floppy opening moving a lot, whereas the new valve was working so efficiently. They then of course removed the equipment and closed me up.

I was the first to receive this procedure here in Australia by this team, and prior to me they really did a lot of practice on models of my own heart, but also on pigs. They made a 3d model of my heart and used that to practice on. I am so very lucky that I was given this opportunity.

OK I am having problems with my Warfarin, but heck, after talking to Chris, I really am now much more at ease with all this. My heart was pretty damaged prior to the insertion of the valve. so it will take time for it to repair itself. I was a bit frustrated in the beginning as i expected a big improvement straight away, but we all know that doesn't happen. Also, I got appendicitis this year as well, so back in for the full surgery etc. This does not help with recovery. I will give this time. I am already feeling like I have more energy. I see the Alfred Heart Team next month for a full workup, it being the 12 months anniversary. I will be getting and echo and a cardiac CT Scan, as well as the other usual tests. I am hoping that there is an improvement in my overall heart function, and really I do feel better, but will wait and see the 'official' results.

If someone like me, at my level of ill health when the valve was inserted, is improving, then how wonderful would it be for others who were not as sick to be able to get this done. This is a 5 year trial, and as I was the first over here, it will be another 4 years before it is approved. That also is enough motivation to ensure I strive to keep well and make it to the 5 year mark. I want to be included in the final report as a success story, not one of the statistics.

Agian, I can't give you any great profound experiences of my near death experiences. But one thing that is very prominent in my psyche is that it is beautifully peaceful I had no anxiety or fear at all, if I could produce a pill that gives you that feeling I would make a million. I also got a beautiful rainbow of colours. Mind you, that could have been just a brain reaction, but the lasting experience I got was one of an overwhelming sense of peace and contentment. I am not into organized religion, but do believe there is an existence after death as a result. Also I have had people with me from the other side at these times, my mother at one stage, I smelt her perfume, and as we had a few issues before her death, I was very rude to her and told her to "F### Off". This was very early on in my diagnosis and I had pulmonary odema. I only mention this because it shows the reality of my experience, it wasn't something I was wanting or yearning for or even thinking about. I have had similar experiences at other times with other members of my family, and they have all been very reassuring. Hope this doesn't freak too many people out, but I am just expressing my own experiences because Agian asked.

Ok I have written a book this post, sorry. But I wanted to answer your questions to the best of my ability. You should hear me on the phone, just ask Chris, we talked for over an hour.

 

[Agian]

Agian, I can't give you any great profound experiences of my near death experiences. But one thing that is very prominent in my psyche is that it is beautifully peaceful I had no anxiety or fear at all, if I could produce a pill that gives you that feeling I would make a million. I also got a beautiful rainbow of colours. Mind you, that could have been just a brain reaction, but the lasting experience I got was one of an overwhelming sense of peace and contentment. I am not into organized religion, but do believe there is an existence after death as a result. Also I have had people with me from the other side at these times, my mother at one stage, I smelt her perfume, and as we had a few issues before her death, I was very rude to her and told her to "F### Off". This was very early on in my diagnosis and I had pulmonary odema. I only mention this because it shows the reality of my experience, it wasn't something I was wanting or yearning for or even thinking about. I have had similar experiences at other times with other members of my family, and they have all been very reassuring. Hope this doesn't freak too many people out, but I am just expressing my own experiences because Agian asked.

Thank you so much for sharing. Truly beautiful.

 

[Agian]

PS I too believe we survive our death. There's growing scientific evidence for it. I suspected you had some such experience, because of the video. Didn't want to intrude with personal questions, but I'm glad I asked.

 

[rakesh1167]

PS I too believe we survive our death. There's growing scientific evidence for it. I suspected you had some such experience, because of the video. Didn't want to intrude with personal questions, but I'm glad I asked.

There is a girl in our village who accurately described how she died from snake bite in early life, her parents name and village where she used to live. All the information turned out to be true. Recently she got married, both the families participated in marriage and they shared cost of marriage too. Indian monks spend years and years in meditation and isolation, just to get out of this repeating cycle of life and death.

 

[Warrick]

I can remember standing next to the surgeon during my operation but nothing else, I've only told a few people this and never mentioned it here because it does seem pretty far fetched and kooky.

I had no recollection at first , I can't even remember walking to the operating table and laying down after the premed or when my wife came in 4 hours after I came out with the breathing tube in and she took a photo of me with thumbs up. But I remember standing there.

When my daughter was really young she use to talk about her "other mum" and say "my other mum died"

 

[Agian]

There is a girl in our village who accurately described how she died from snake bite in early life, her parents name and village where she used to live. All the information turned out to be true. Recently she got married, both the families participated in marriage and they shared cost of marriage too. Indian monks spend years and years in meditation and isolation, just to get out of this repeating cycle of life and death.

That's amazing. We come back Rakesh.

 

[Agian]

I can remember standing next to the surgeon during my operation but nothing else, I've only told a few people this and never mentioned it here because it does seem pretty far fetched and kooky.

Not kooky at all.

 

[dornole]

Thanks for posting the details of the procedure. My repair was done via threading a balloon up through the femoral vein, into the right atrium and then poking through the septum to get to the mitral valve. I kinda wondered how a whole valve could do that. The access you mentioned makes a lot more sense. But it is amazing they can do that at all! You're amazing too.

 

[OzChrissy]

The technology is advancing so much it is such an exciting time. The way they did mine seems so logical, imagine what they will be able to do in a few more years. I was only 4 years after you, maybe lots of other procedures will be able to be done in a similar manner, grafts etc. The possibilities are endless. Are they running trials over there for non invasive mitral replacement, there are heaps of other companies in on it too, my one just happened to be TWELVE now Medtronics. I know that Medtronics bought out TWELVE for half a billion dollars, I really am the million dollar woman.

 

[dornole]

Well, it's been 12 years for me - and the first mitral valvuloplasty was in 1984 . . . not sure how long that took to become the standard of care for mitral stenosis, but we shall see!!

 

[dornole]

Well, it's been 14 years for me - and the first mitral valvuloplasty was in 1984 . . . not sure how long that took to become the standard of care for mitral stenosis, but we shall see!!