Hi, New Memberb

[Guest]

I am really happy that I have found this site. I am 62, Female and come from Australia. I have been a member of other heart sites, as I have had cardiomyopathy since 1999 and have a Biventricular Pacer/ICD since 2006. Over the past 4 years though things have been a bit rough health wise, I got Oesopageal Cancer in 2012, then had my gall bladder removed which was messed up and I ended up with Septicemia. This led to a lot of damage to my heart and it tipped me over the edge. My mitral valve which was never that good was now severe. I went to one surgeon who advised me that I was not able to undergo open heart surgery to have my valve replaced and that I was also not a candidate for a heart transplant because of my other illnesses. However, I was referred to another group here in Melbourne Australia, the Alfred Hospital, and I was offered a place in a trial for Transcatheter Mitral Valve replacement. I was only the 6th in the world to get this valve by this manufacturer and the 1st in Australia. Imagine how special I felt.
http://circinterventions.ahajournals.org/content/7/3/400.full

I went into the procedure with arms open, expecting that it would be a miracle cure I suppose. Has anyone else felt that way??? Unfortunately it did not live up to my expectations. Don't get me wrong, my valve is working beautifully and efficiently. I recovered from the surgery quickly, but I have now developed atrial issue and have more ventricular Ectopic beats than I have before. I am lucky I have the ICD. Also I am now on Warfarin, and unfortunately it is not stable and has not been so since I have been on it, 12 months ago now. I have had two TIA's this year, and these occur when my INR levels drop below 2, but I am also at high risk of a bleed as I also can get very high INR levels. At the moment, as of a test yesterday I am sitting at 4.2. I am very careful with what I eat, have had all my other meds and supplements checked out by Chemist and Doctor, and they are all fine. It seems to be something that they cannot explain, but I do suspect it has something to do with my metabolism and also the fact that with the Cancer I had 2/3 or my stomach and 2/3 of my oesophagus removed.

I would love to hear from anyone who has had similar issues with Warfarin and INR stability and if they were able to find a way to control it. I find this extremely stressful, over the years I have faced a lot of medical issues but this by far is the worst for the anxiety I am experiencing. Almost makes me regret getting the new valve.

 

[OzChrissy]

Hi, for some reason this did not give my forum name, it is Ozchrissy and I am sorry I posted this twice. Will get used to this forum I hope and not make any more errors.

 

[Agian]

Hi Chrissy, I'm from Adelaide. I read your post twice. It sounds like your valve operation was a success.
You have ectopic beats, but your 'covered' with an ICD.
I hope your cancer is in remission (gone).
What type of cardiomyopathy do you have, so I can google it?

You say you got TIAs, what symptoms did you get?

Now, as to the cause of your anxiety, a fluctuating INR, the Warfarin brigade will be here soon to help out.
1) Do you self-test, how often? If so, what type of machine do you use?
2) Have you considered another cardiologist, because damn? It doesn't sound like you're getting answers. Reading between the lines, I'm betting he/she is a douche (but I could be wrong).
3) Of course it has to do with your metabolism.
4) you got a good deal, but i don't understand why they ruled out surgery, given you have already had other successful procedures.

Take care, you've come to the right place.

 

[OzChrissy]

Thanks Agian, great to hear from you. Hope you were not blown away by the storm last night.

I think the docs are on a waiting game with the Warfarin, they have mentioned a heparin style of injection, on top of the Warfarin, but are just keeping an eye on me at the moment. Weekly testing and some times twice weekly. I go to see the Heart Team who did my replacement valve in October and I will definitely be pushing for some action. I have a local cardiologist who seems to not want to do anything unless he gets the approval from the Alfred Docs. I am this week on 8 and 8.5 warfarin dose, test again on Monday.

I wasn't well enough to get the open heart surgery and the valve the normal way because of the septicemia I got after the gall bladder op. It damaged my heart a lot and also my pancreas and my liver. My heart just was not in a good enough condition. There were not problems with my earlier surgeries, my cancer op was 8 hours and involved a lot of cutting, I spent 10 days in ICU but recovered well and my heart was back on track. Even with the chemo I didn't get much damage. But a bloody Gall Bladder opp going wrong, well that was the tipping point.

I realize how lucky I am to have the ICD - With the septicemia I actually had a cardiac arrest, but because I already had my device, it shocked me and I am still here. But unfortunately the damage had been done to my heart.

I hope I can get some suggestions with regard to the warfarin, I cannot take the other newer anti coagulants as they are not effective enough with this particular valve. I love the way you mentioned the "Warfarin Brigade", they sound like a very encouraging support.

 

[pellicle]

Hi

...
I realize how lucky I am to have the ICD - With the septicemia I actually had a cardiac arrest, but because I already had my device, it shocked me and I am still here. But unfortunately the damage had been done to my heart.

bloody nora ... sounds like you've been through the wringers mate ... glad to read you're still tikkin along through all the challenges.

I hope I can get some suggestions with regard to the warfarin, I cannot take the other newer anti coagulants as they are not effective enough with this particular valve. I love the way you mentioned the "Warfarin Brigade", they sound like a very encouraging support.

well if you have some questions I'd be happy to help. drop me a PM with your mobile and I'll call you for a chat if you like, I'm in Queensland (for now).

Best Wishes

 

[Protimenow]

It sounds like whoever is managing (or mismanaging) your anticoagulant therapy may have thrown you on the merry-go-round. They may not realize that it takes a few days for the effects of a dose to show in your INR - and by that time, they may have made ANOTHER change in your dosing.

Self-testing gives you a pretty good view of what your INR is AT THE CURRENT TIME. If it was me, I would first make sure that I keep track (I use a spreadsheet) of my dose, anything that you think might have had an effect on my INR, and my current INR. For the past week, I've tested every day or two because my INR for some reason dropped to levels that I was uncomfortable with. I also started taking an antibiotic, and this may also have changed my INR. Once I stop the antibiotic and its effects on INR (if any) diminish, I'll again do more frequent testing to verify my current INR (current at the time tested), and make MINOR adjustments if necessary.

Having your own meter, and being able to self test (and, in cases like mine) even to self-manage, gives you a sense of control over your INR (and your health).

FWIW - a few years ago, I had a TIA because a meter that I relied on to give me an accurate result DIDN'T. Now, whichever meter I use (and I've tested at least six different meters through the years and compared these to each other and to labs), I like to get a monthly blood draw just to confirm that the meters and lab results are relatively close.

Yes, as others said, we're here to help.

 

[OzChrissy]

lol Pellicle, you sound like a fair dinkum Aussie, "Bloody Nora" ROFL. I will do that, it would be great to chat with someone who knows about this stuff.

Protimenow, I really don't think we do any Self Testing here in Australia. I have never heard of it, and the doctors have never mentioned it. It would really make a big difference to my sanity I think. It has got to the stage though where I hate the blood testing days, as the time in between I can sort of forget about it, but on the day of the test I am very conscious of how vulnerable I am and the waiting for the results to come through is horrid. I knew I was high yesterday, I bled a lot from the tiny pin prick, but when I got the results it scared me even more. As for the doctors managing me with the Warfarin, it seems to be the Doctors attached to the lab, not one of my own doctors. Sometimes the doses they put me on seem weird and I logically cannot see how they can affect the adjustment needed.

I do keep a spread sheet of my levels and doses, have done for the past 6 months and have taken them to each doc. The real people who can make any changes are 150 klm away and I do communicate with them by phone, but they seem to not be too concerned. I will see them next month and will be taking everything and sort of be pretty persuasive to get something done. After 17 years of this heart stuff, I am pretty good, especially recently, of throwing my weight around, although there really isn't that much of me to throw around. lol

I have dilated cardiomyopathy Agian, and they haven't got a clue how I got it either. The old idiopathic label has been attached.

I can't thank you all enough for your responses, it is so encouraging.

 

[Agian]

Protimenow, I really don't think we do any Self Testing here in Australia. I have never heard of it, and the doctors have never mentioned it.

We do. Pel will explain.

Coaguchek XR and strips from medshop.com.au

 

[OzChrissy]

To say I made the right decision to join this forum in an understatement. I have just had the most brilliant conversation with Pellicle, and I cannot express my appreciation for his knowledge and attitude. I feel like a giant weight has been lifted off my shoulders and I have a goal and a plan. Thank you so much with your generosity in sharing your knowledge and time. Just so that you know I am a real human I am also sharing a video I did for Phillips Medical earlier this year. This was prior to appendicitis and also my TIA's. I am getting back to this level of health. This was 6 months after my valve replacement.

https://vimeo.com/171950464/d1fe07720f


Agian I am getting all my stats and information for my appointment in October. Look out Alfred here I come.

 

[pellicle]

Hey mate

glad to help

... Just so that you know I am a real human I am also sharing a video I did for Phillips Medical earlier this year. This was prior to appendicitis and also my TIA's. I am getting back to this level of health. This was 6 months after my valve replacement.

a course yer a real person ... who else would bloody type here ;-)

 

[Agian]

To say I made the right decision to join this forum in an understatement. I have just had the most brilliant conversation with Pellicle, and I cannot express my appreciation for his knowledge and attitude. I feel like a giant weight has been lifted off my shoulders and I have a goal and a plan. Thank you so much with your generosity in sharing your knowledge and time. Just so that you know I am a real human I am also sharing a video I did for Phillips Medical earlier this year. This was prior to appendicitis and also my TIA's. I am getting back to this level of health. This was 6 months after my valve replacement.

https://vimeo.com/171950464/d1fe07720f


Agian I am getting all my stats and information for my appointment in October. Look out Alfred here I come.[/URL]

He's a good man, isn't he?

Saw your video. You're basically describing a mitral TAVI. We're glad to have you here.

 

[honeybunny]

Just want to say welcome to the forum and I'm glad you are getting the info you need.

 

[Rachel]

WOW - Just saw your video, thanks so much for posting that, I love it! You are so strong and such a beautiful person, I can tell you live your life to the fullest. I don't post here as often as I'd like, but I'm really glad I caught your post and I'm really happy you joined and got connected to the amazing people here on this forum.

All the best moving forward,
Rachel

 

[OzChrissy]

Thank you so much Rachel, I really need the expertise of this group. I feel much better this morning, I feel I am gaining control back over my life. I have really got a lot of learning to do with regard to my valve and the Warfarin. Ignorance leads to anxiety for me, and I have been given an opportunity to learn, so I am really thankful to Pellicle for the time he spent and the knowledge he shared with me.

My brain is a bit sore :Face-Cool: but I know I will be able to learn.

 

[pellicle]

Hi

Pellicle for the time he spent and the knowledge he shared with me.
My brain is a bit sore :Face-Cool: but I know I will be able to learn.

as I always say:
http://www.valvereplacement.org/for...before-and-after-coumadin?p=865215#post865215

Knowledge is power

and power is confidence

 

[dornole]

I'm glad that you got the opportunity to try this new procedure since OHS was not an option. I'm particularly interested because I will need MVR at some point, and my cardiologist was on the first US team to do TMVR. Not that I'm likely to qualify (unless other things deteriorate) but I'm still encouraged that your procedure was successful. If Pellicle can help you get your Warfarin sorted that'll be another great thing. I wish you the best.

 

[OzChrissy]

Dornole, I wish everyone was able to get their valves done this way. That is part of the reason I was so keen on the trial, ok I needed it to give me extra time, but also I have benefited greatly over the past few years from new technology, and someone has to be the first. The selection for the trial is pretty sad though. You really have to be that sick that there is no other option. In my case one of my other options was a transplant, but I was too sick, because of other co-morbidity to quality for that. I am probably the youngest in this current trial I am participating in, and the man who was 2nd cab off the rank on the day of my surgery came into the prep room whilst I was still there. He was on a walker with oxygen and looked like death warmed up. He was older than me, in his 70's. I have since met him on other occasions at the Hospital and he is doing fine. He also though had issues with TIA's. The stats on my valve, TWELVE which was bought out by Medtronic, as of the time I had mine done was not very good. The previous trials had been run in Poland. There was about a 75% death rate. The Team that did mine had just finished the trans catheter aortic valve replacement trial and were very experienced with the concept and spent quite a while doing their research and also practicing for my procedure on pigs. However I am not one of those statistics, and I have had mine nearly 12 months and all is well. If they were able to do the trial on fitter individuals I am sure the results would be a lot more promising. The valve is working beautifully, no regurgitation whatsoever, and I healed from the procedure very easily. It is just that the damage to my overall heart is taking its time to catch up with the new valve. Hopefully time will be the decider in that.

 

[dornole]

Yes, I saw those sobering statistics . . .VERY glad you have done well. I wonder if this is you in this article. http://www.tctmd.com/show.aspx?id=133937 I live in Minneapolis, so I'm glad it looks like that trial is progressing well. Still like you said, I really DON'T want to qualify for this procedure unless I can dodge the bullet and delay intervention for several more years (unlikely), because I do know it is a last-ditch choice still. I hope you get many reasonably healthy years out of your new valve.

 

[Agian]

Chrissy, in the video you talk about being on the brink of, or actually at the point of, death, five times.
Did you see/experience anything?

 

[AnnaK]

Hi Chrissy, So great to hear from someone who has had the TMVR procedure- you're one tough cookie - so pleased it worked out for you. We're a few years from approval in the US. Can't help you with the warfarin issue but just wanted to say thanks for posting & wishing you the best going forward.