I've followed your progress - so glad you're doing better & better!
...Vicki D.
Paul Rose Hi Vicki thanks! I see from your journal that you are near the start. The HVJ is a great forum for ... Read more
Paul Rose Hi Vicki thanks! I see from your journal that you are near the start. The HVJ is a great forum for support, I'm sure everyone will be pulling for you.
Paul
On July 27, 2012...
Hi Paul, My daughter has to take coumadian, and since she has moved to Georgia not her new doctor told her that Warfain was a generic drug for coumadian and it makes your INR go all over the place. While she lived in Virginia she was having trouble with it being to low or to high. Check this out with your doctor and what he says.
Getting there
LInda H
Paul Rose Hi Linda, thanks I had not thought of that but now definitely a question I will raise
Paul Rose Hi Linda, thanks I had not thought of that but now definitely a question I will raise
Paul (ex regurgitator )
On July 27, 2012...
Paul,
My afib is completley gone, the few times that I thought I might still have it I went to my doc and I had to wear the halter monitor 3 times becouse I was afraid of my own heart beat, but all 3 times there was no sign of afib, apperantly it was just me freaking out. :) . YOu have to wipe down the shower after using it? why?
That's what the scrubbing bubbles foam cleaner is for! you have been totally domesticated, lol, lol.
Regards,
Patricia De Leon
Paul Rose Hi Patricia, that is fantastic, hopefully it is heart remodelling that gets me there. I did not have ... Read more
Paul Rose Hi Patricia, that is fantastic, hopefully it is heart remodelling that gets me there. I did not have a maze or ablation.
My wife got a kick out of the shower wipe down comment and the totally domesticated piece:-)). Use technology if it wins anytime. We are after all living examples of it.
Paul
On July 26, 2012...
I had some numbness on my thigh after surgery, a year later is almost gone, sounds like you have a great sense of humor, keep it up and stay positive!
Good to hear that the numbness has dulled and that is something I will look forward to. I am Amazed at the referred pain, so far I have used it to my advantage.... getting away with not wiping the shower down due to numb hand, I think I might be rumbled with this posting ;-))
In your journal you said you had Afib, has this also moderated following you heart remodelling too?
Paul
On July 26, 2012...
So glad to hear you are at home, nothing can beat being in your own home and surroundings, trick is not to over do it so keep doing as you are told. How is the patience game going?
Best wishes to you and Joan
Nicole
Paul Rose Hi Nicole! You are right about feeling better at home, even if there have been a few not quite so con ... Read more
Paul Rose Hi Nicole! You are right about feeling better at home, even if there have been a few not quite so confident moments.
Joan is keeping the get back regime on track, back from this mornings 500yd marathon ;-) quicker than yesterday and still air in my lungs to boot. The difference is mind blowing... Oh yes and I have started my get off the meds program, so far so good.l
Only destroyed two packs of patience cards, just kidding, as can't concentrate long enough to loose it ;-)) I must be getting mellow!
Hope all is going well
Thanks for the support
Paul
On July 25, 2012...
Hi Paul,
Thanks for the pictures - you looked.......comfortable? I'm glad you are home. I was told it will take 6 months to feel completely recovered and "normal". My mitral valve repair via sternotomy is in 2 weeks. Hope to join you on the other side!!!
I definitely feel comfortable provided the pain is appropriately managed. ie do not let the pain meds base level drop too much. Although the nurses ask if you would like to reduce the strongest ones I found that staying with the max prescribed for the first couple of weeks was the best advice I received from the nurses and Doctors . I learned very quickly the mistake of saying yes to reduce the meds, my base level dropped and even with oral morphine it took a good few hours to get the pain back under control. It is almost as if the protocol requires the nursing staff to ask.
It does not help your body to be in pain, everything tightens up and it becomes a virtuous loop. Everyone is different and only you will know if you are hurting, no need to be heroic, if it hurts say so and the appropriate meds will be provided.
I was very calm when I went down for surgery. I watched the video of Dr Wells doing the exact (MVP repair via steriotomy) operation, and did plenty of research. I was ready and "happy" going down to theatre
It is amazing how quickly you start to feel better with the repaired pump. It is great to be an ex-regurgitator :-)). there will be some bumps along the way and yes I did feel vulnerable but they did pass.
I am not sure on the 6 months for recovery, Is that getting back to doing most of the things you did before? We are all different, and I think in 6 months we can look forward to being much better, but still on the recovery road.
Look forward to you climbing your mountain. I along with many others on the HVJ site. will be pulling for you all the way and look forward to you become a full member of the ex regurgitator club
Warm regards
Paul
On July 25, 2012...
Great photos! As usual, you are looking dashing and handsome. We are in Montreal for a few days. Linda, Les, and little Autumn joined us to celebrate B's bd. HI, JOAN!
Helen & Borden
Paul Rose Hi Helen, flattery gets you everywhere. Have a great time in Montreal and plenty of celebrating.
Paul Rose Hi Helen, flattery gets you everywhere. Have a great time in Montreal and plenty of celebrating.
Paul
On July 25, 2012...
Hi, Paul --
Re the tingling fingers....my right thumb has been tingling since surgery (May 25). They say it will pass. I've also got no feeling on the left side of my right breast -- I expect it's all related to the contortions they subjected us to on the operating table.
Selma
Paul Rose Hi Selma thanks! I hope it does settle down as I can't fret chords properly on my guitar, the pinky i ... Read more
Paul Rose Hi Selma thanks! I hope it does settle down as I can't fret chords properly on my guitar, the pinky is totally numb. I was going to use recovery as a time to practice, . Then again wasn't very good before so my expectation may be misplaced :-))
I hope your recovery is going well and the feeling returns soon, happy for mine to follow.
Paul
On July 25, 2012...
Hi Paul, hope all is going well - Relax and take it slow and steady - don't try to rush.
You made some very insightful comments in "Day 7 - escape committee. - approved exit today !!!!!!!" particularly point 7.
At this stage your mental health is as important as your physical health. You and Joan both need to say positive and focused.
Chin up. Back straight ... and don't over do it in this heat.
Paul Rose Thanks for the positive comments, albeit they are anonymous.:-) The mind races but hopefully my head ... Read more
Paul Rose Thanks for the positive comments, albeit they are anonymous.:-) The mind races but hopefully my head will rule my body in the slow and steady stakes. I am surprised how much and how little you can do.
Paul..
On July 22, 2012...
Paul,
Great to hear you are making such great progress. Even better news to hear you are now home and are making great (750 even) steps to recovery. Keep up the good work and keep listening to the medics and Joan...enjoy the Olympics on the TV. Speak soon
Rob Evans
Can't believe that I am counting steps, but there had to be some KPI! Took it easier yesterday as that 1,000 step day really did tire me out. That said already have my halfway mark done for the day. It's hard to know just how hard to push but Joan is making sure I do not push too hard
Can't wait for the Olympics to start as daytime TV is torture.
Paul
On July 22, 2012...
Paul,
Glad to hear that you are home. Slow and easy is the way to go. Speedy recovery.
Thanks, I think both of us will need to apply that plan.
Loking forward to a face-to-face visit as soon as we are both up to it
Take care and talk when you get back
On July 21, 2012...
Hi both
Glad the escape committee has approved your request. Hope you have had a good nights sleep? take care because its a whole new world recovering at home. It's more comfy but dangerous because you attempt too much and get very tired.
Take care will speak soon as off to Father in laws for weekend in New Forest xx Angie and rebels
First night sleep completed and only problem was really slipping down the bed ! I'm working on it. But it felt like I managed more hours last night than the whole time at Papworth excluding ICU time.
Have a great time in the New Forest, hope the weather cooperates
Thanks... Paul
On July 20, 2012...
You are going to do just fine. Just listen to your body. When you over do you will know it and say oops. Sounds like you got a new fuel pump, where I will get a valve job. The valves are all corrided. Maybe I will be getting some new spark plugs too. lol Hang in there
Getting there
Linda H
Paul Rose Hi Linda, thanks and good luck with the new valves. I'm sure they will give you many years of high p ... Read more
Paul Rose Hi Linda, thanks and good luck with the new valves. I'm sure they will give you many years of high performance :-))
I have a habit of ignoring my body saying slow down.
Great to hear that you are getting there too
Paul
On July 20, 2012...
Hi Paul, Welcome back home. Its always good to get back. But now the real work begins and that is to get stronger. One day at a time. Dont overdo. Good luck to ya.
Getting there
LInda H
Thanks and yes I'm looking forward to a long haul and have been warned about too much acceleration. I hope my timing allows a healthy balance of work, meds, and rest and recovery to remain a former regurgitator
Paul
On July 20, 2012...
Hi Paul,
I'm back in UK now and glad to hear you're progressing well. Also very pleased there are no photos on your blog. Keep doing as you're told. Speak soon.
James R
Paul Rose Hi James glad you had a good trip and a safe return
Between Joan and Dee I don't have a lot of opti ... Read more
Paul Rose Hi James glad you had a good trip and a safe return
Between Joan and Dee I don't have a lot of option!
The photos are actually not that bad, but I will use some discretion
Speak soon
Paul
On July 20, 2012...
Hi Paul, Hope you are recovering well. Read your journal and guest book; too much information - feel sick myself now!! glad tohear you had a bath, won't be looking at the photos. Just wanted to wish you the best and tell you to get your ass back to work as soon as you can. We have planned you in on a few projects so you'll be pretty busy when you get back. We put you down for 150% now as you should be able to improve your performance, but we will give you regular reviews and feedback.
Joking aside - best wishes to you and Joan, will keep in touch. HeatherS & Murray
First few entries now in the book. a real topic of conversation on the wards. Heather a great idea although many bribes already accepted by the final judge ;-)
I expect that you will have finished many of the projects before I get back so no problem...
Thanks for the best wishes
Paul
On July 19, 2012...
Hi Paul
Glad the operation went to plan..but sorry you have not had such a good day. Probably you trying to get in a bit too much physio and the drugs can't keep up!
Please try to keep the recovery at a normal pace after all its a marathon not a sprint.
Take care
Lots of love Angie and rebels xx
Paul Rose Hi Angie thanks for your thoughts. I think you have it on the keeping up meds side! I had just let ... Read more
Paul Rose Hi Angie thanks for your thoughts. I think you have it on the keeping up meds side! I had just let the level of pain meds drop too low and once the pain starts it is then difficult to get back under management . I am pleased to say that it is now and when the experts ask 1 or 2, it is really only being polite, just take the max meds level for the first few weeks, then and only then start to think about managing off.
Talk soon
Paul
On July 19, 2012...
Hey Paul....... Soooo happy that the op went to plan.. Anna told me you were going for it, but cant believe how quickly it has come around.....
Keep going handsome :) you are doing amazingly well, sending love and hugs to both you and Joan.....
Love always Tracy
Paul Rose Hey Tracey great to hear from you! Thanks for the hugs and best wishes, it's been a roller coaster, ... Read more
Paul Rose Hey Tracey great to hear from you! Thanks for the hugs and best wishes, it's been a roller coaster, but the outcome so good far. Difficulty is taking the recovery slow and gauged versus the usual full speed ahead and damn the torpedoes.
Love Paul
On July 18, 2012...
Hello, Paul (& of course Joan),
Enjoy the free drugs while you can. We arrived in Boston today & a miracle happened. It's raining, FINALLY!!! Would you be able to watch some of the Open action tomorrow?
Take care.
Helen & Borden
Not sure how much I will get to see tomorrow, but have it on good authority that I have severe restrictions on what I can lift , and for the first weekend it's the remote!
Good to hear you made it safely and Sorry to hear its raining in Boston, but please don't send any more over here. We are totally waterlogged.
Paul
On July 18, 2012...
The Papworth team need a medal for looking after you! :-) , can't think of worse patient , bet you even offered to supervise the whole procedure through your drug induced haze. Heaven knows what you must be like on drugs lol Great idea to keep a journal, even better knowing you are on the mend. Keep the updates coming.
Paul Rose Paul says in response,
The team will need a rest, I was just a part of a very busy day to them. John ... Read more
Paul Rose Paul says in response,
The team will need a rest, I was just a part of a very busy day to them. John the registrar was brilliant, exuded confidence, great bedside manner and new how to communicate really well. The haze is starting to rise and I only left a trail of collateral damage at other hospitals:
Consultant out on Stress. "..........................Check
Consultants dropped x2. .............................Check
Consulants, registrars, Nurses, physio's.
Pharma, ICU, CCU and staff at Papworth ......"..............".......................................... Priceless
On July 18, 2012...
Hey Paul!
Glad to see you have kept that great sense of humor through your initial recovery. I know what you mean by the days running together. I'd always have to count in my head a couple of times before posting an update.
It will take some time for the heart to recover as I am sure you have read and heard so many times. I had SVT, A-fib and junctional rhythm the days following surgery, but like most patients it cleared up within the first week or two.
Congrats on all the progress so far and keep up those walks. Best of luck Paul!!
-Thomas H.
Paul Rose Hi Thomas , I can now take a little time to smell the roses and not rush the recovery. I will keep u ... Read more
Paul Rose Hi Thomas , I can now take a little time to smell the roses and not rush the recovery. I will keep up the exercise and slowly increase. I am looking forward to the next few and hope it goes to plan with the Afib clear up
Thanks again for the support
Paul
On July 17, 2012...
Great update Paul! You have a great way with words. I also had trouble with nausea/vomiting, it stopped as soon as I got off the strong pain meds and switched to tylenol and ibuprofen on the 2nd day. I hope you get some more sleep tonight, it is very hard to sleep in the hospital though! Thinking of you!
Holly P
Paul Rose Thanks Holly! Managed to avoid nausea and vomiting pretty much. But I do get to try all these drugs ... Read more
Paul Rose Thanks Holly! Managed to avoid nausea and vomiting pretty much. But I do get to try all these drugs legally and for free and it's the first time for both. Although if we could have gotten the same results without an op, I would have gladly given up both these opportunities. I am sleeping a little, but there are So many here, and some looking for complete transplants. It puts life into perspective with a swift kick in the rear
On July 17, 2012...
Hi Paul,
Glad that the surgery went well and you are on the mend. Isn't modern medicine wonderful? With your positive attitude, wit and cheery disposition, you are ensured of a speedy recovery! All the best to you and Joan.
Lancy & Pat
Paul Rose Hi Lancy and PAt! Great to hear from you and many thanks for the good wishes. Looking at all the fe ... Read more
Paul Rose Hi Lancy and PAt! Great to hear from you and many thanks for the good wishes. Looking at all the fellow ex-regurgiators around me in CCU tonight you can not fail to be impressed, medical technology is working at a phenomenal pace and every now and then each of us gets to benefit from it.
Paul r
On July 17, 2012...
Hi, Paul,
you sound great, as usual. A wonderful Medical staff makes the hospital stay a very positive one. Hopefully, you will get some sleep. I can't sleep now, getting exited about going to Boston on Wed (fly to Toronto tomorrow, Tuesday).
Helen and Borden
Paul Rose Hi Helen and Borden, have a wonderful time in Boston and many thanks for all your support, those tra ... Read more
Paul Rose Hi Helen and Borden, have a wonderful time in Boston and many thanks for all your support, those transatlantic skypes really do matter. Yes, like your team the staff here are with out doubt remarkable.
On July 15, 2012...
Hey Paul, I cant wait to see that view myself. I am just hanging in there with a valve at 1.1. Not that I want to get the big fillet lol. but just want to feel better. Maybe tomorrow will be the day who knows. Keep doing good and enjoy the other side. I will see you there someday.
For the long haul
Linda H
Paul Rose Hi Linda hang in there the results are really worth it. I'm sitting in CCU and the mountain is great ... Read more
Paul Rose Hi Linda hang in there the results are really worth it. I'm sitting in CCU and the mountain is great from this side. The difference is like day and night. Don't be put off by your watching others go through it. It's your journey and you have control. My father had repeat surgeries 10years appart.
Regards
Paul
On July 15, 2012...
Yay Paul!!! That dang catheter....but in just a few more days and you're back home. I'm so happy for you and I'm praying for your speedy recovery. Regards, Lee Castro
Paul Rose Hey Leo, it's amazing how many times it gets tugged accidentally. Thanks for your thoughts.
Paul
On July 14, 2012...
Congrats Paul!!!
Great update!
Keep on tickin!
Adam Pick
Paul Rose Adam, you deserve a medal for this site. Your support to the community is without doubt exceptional. ... Read more
Paul Rose Adam, you deserve a medal for this site. Your support to the community is without doubt exceptional. It is so much easier to go in with knowledge and understanding, then there is no fear only colly wobbles ;-)
Hopefully no clicking just lot as of tickin.
Thanks... Paul
On July 14, 2012...
Hi Paul, That is pretty fast. Welcome to the other side of this mountain. Heres to a speedy recovery, but that sounds like you have a pretty good start on that. Keep up the good work.
For the long haul
Linda H
Paul Rose Hi Linda, and what a view from this sie of the mountain it is so much better view. I'm hoping that t ... Read more
Paul Rose Hi Linda, and what a view from this sie of the mountain it is so much better view. I'm hoping that the Afib will settle ina few months
Thanks again Paul
On July 14, 2012...
Welcome to the other side Paul! Wow! you are doing awesome! I can't believe you are posting already. Keep up the hard work of recovery, walk, walk, walk. The next few days will be hard, but you can do it!
Holly P
Paul Rose Hi Holly I am so pleased to get to this side. I have strict instructions not to push things too hard ... Read more
Paul Rose Hi Holly I am so pleased to get to this side. I have strict instructions not to push things too hard. Had my first walk this morning a whole 30yds pushing the drug and electronics stand
Thanks again Hollly
On July 14, 2012...
Congrats Paul! Awesome news. Mighty impressive you are already posting. Sounds like you had a relatively pain-free surgery and ICU stay...must be a great team at Papworth if they are that diligent about pain management :-).
All fine here with the wound healing. Not nearly as much excitement as you are having right now. Keep up the great work and look forward to your next post!
-Thomas H.
Paul Rose Hi Thomas and thanks for your support. Tthe pain management is excellent. The zipper line is still c ... Read more
Paul Rose Hi Thomas and thanks for your support. Tthe pain management is excellent. The zipper line is still covered but the dressing comes off today.
Paul
On July 14, 2012...
You are posting the day after surgery?? Man, they must give you some GOOD drugs in the UK! So glad you got a repair as you had hoped.
Welcome to the other side.
Selma, former regurgitator.
Paul Rose Thanks Selma, Yes, I am amazed, the drugs really are GOOD and I just can't put into words how pleased ... Read more
Paul Rose Thanks Selma, Yes, I am amazed, the drugs really are GOOD and I just can't put into words how pleased I am.
I love the former regurgitator. Role, can I plagiarize
Paul
On July 12, 2012...
Hey Paul. Man, time flies. Can't believe your day is already here! Wishing you the best of luck and hope you can stay healthy and get some sleep Thursday night.
-Thomas H.
Paul Rose Thanks for your thoughts Thomas, I have been sleeping like a log for the past few days, getting prac ... Read more
Paul Rose Thanks for your thoughts Thomas, I have been sleeping like a log for the past few days, getting practice in. Hope you are fully recovered from your last Op !
Paul
On July 11, 2012...
Hi Paul,
Good luck on you mitral valve repair on the 13th. My family is praying that all goes well with you.
Good luck tomorrow, Paul! I'll be sending healing vibes your way.
Summer
Paul Rose Thanks for your thoughts Summer, I'll channel all those vibes towards a positive outcome !
Paul
On July 11, 2012...
Hi Paul...
Will keep you in my prayers as you climb the mountain.....
Thinking of you & your family
Connie T
Paul Rose Thanks for your thoughts Connie, I'm ready for that mountain !
Paul
On July 11, 2012...
Good luck and blessings tomorrow Paul, you will be in my prayers. Look forward to hearing from you from the other side of your mountain!
Linda Dixon, AVR 3/13/12
Paul Rose Thanks for your thoughts Linda, I'm looking forward to skiing down that mountain !
Paul
On July 11, 2012...
Hope you watched "Heart vs Mind: What Makes Us Human ?" last night (Tue 10 Jul 2012 21:00 BBC Four ). Always good to see Frank on the TV.
If not check it out on iPlayer or Thursday night @ 23:10 !!!
Good Luck.
Paul Rose Thanks I just watched it on iPlayer! Frank has also starred on Channel 4 doing a Mitral Valve repair ... Read more
Paul Rose Thanks I just watched it on iPlayer! Frank has also starred on Channel 4 doing a Mitral Valve repair, it is also UTube.
I get to experience the MV repair operation first hand on Friday 13th
Regards
Paul
On July 10, 2012...
Hi Paul,
Our surgery day is getting close, just want to wish you the best and a fast recovery. (My surgery will be the same day and I know God will be there with both of us) Gbu.
Jeamary
Paul Rose Hi Jeamary, Thank you and I wish you all the very best for your surgery too.
Paul
On July 3, 2012...
Hi Paul..
Just wanted to send my best wishes to you as you prepare to "climb your mountain"....I hope your recovery is a smooth & uneventful one!
I will be watching for your updates..
Take Care!
Connie T
Paul Rose Thanks for the wishes Connie! I'm definitely up for the climb and just have to try to remember to b ... Read more
Paul Rose Thanks for the wishes Connie! I'm definitely up for the climb and just have to try to remember to be slow and steady.
Paul
On June 26, 2012...
Hey Paul!
Thanks for the response below. It's quite interesting to hear another patient's perspective on a condition that's so similar.
I think I misunderstood your comment on video taping the surgery. LOL. For me, I actually wanted the surgeon to record mine so I could have something to scare the future grandkids ;-) Seriously though, my plan was that it would be helpful to have a video record of the procedure should I ever need a follow up surgery down the line.
Regarding your question about my NSR, I actually met with the cardiologist today to go over my latest Holter monitor reading. Heart function was normal, EF was 60 to 65%. The results were better than the previous week when I was on Metoprolol. This time I had no abnormal stops (previously I had a one instance for a few seconds where my HR dropped to 26 bpm). The latest readings showed a slightly low HR while sleeping (lowest was 47 bpm), with an average in the 60's. He also mentioned that at night there were a few instances where my heart switched back into junctional rhythm, which he explained means the heart beat comes from the center of the heart (AV node?)versus the top (sinus node). The Holter also recorded 1400 PAC's and 23 PVCs over the 24 hr period. It sounded like this is something that improves over time and does not affect the heart function. He is generally pleased with all these findings since we are still only 40 days from surgery, but as a precaution wants me to follow up with an electrophysiologist. At this point there is no indication I would need a pacemaker.
That's great news that your switch resulted in being transferred to a very experienced surgeon. As I'm sure you've read, studies show this is the most important factor in the success of valve surgery. Like you, I had the ability to wait, and scheduled my 5/17 surgery back in early February.
Will be eagerly awaiting your updates as the date gets closer. Wishing you an enjoyable and stress free journey these last few weeks. Take care!
Thanks for the comments and really good to hear you are in NSR plus improving results and avoiding a pacemaker.
Will post updates as the date gets closer. Staying busy at work so I don’t have time to stress about the op!
All the best
Paul
On June 25, 2012...
Hi Paul,
Just wanted to follow up on your question about videoing the surgery. I think this may definitely be n option you can request. I consulted with 3 surgeons on mitral valve repair surgery. The first 2 agreed to video tape it, but the 3rd, Dr. Gillinov at CCF, did not want to make a video record because he said the camera was obtrusive. In the end I didn't feel this was a big enough issue to affect who I chose for the surgery, and so I stayed with Dr. Gillinov and dropped the issue. I wrote about it in my journal if you want to read a few more details.
It's interesting to see the differences in our health care systems. I have heard we pay much more for surgeries in the US, but it does seem much easier to schedule a procedure in comparison to what I have read here from UK heart valve patients. Do you have the ability to change the date if you want, or would you have to get back in line and wait another month for a different date? Just curious bc my wife is superstitious (I'm not) and wouldn't let me have my surgery on a Friday the 13th.
After reading your note below on why you decided agains a cardioversion, I was intrigued. Because the cardioversions were able to return my heart rate to SR on the first "shock", for an extended period of time (14 months the first time, and for the 5 mnths up until MV repair surgery), I assumed the cardioversion option was a simple choice for anyone in A-fib. I was also under the impression that having the heart stay in A-fib increases the possibility of a blood clot forming in the atrium, but I might have misunderstood my cardiologist on the issue. Since you are now within 3 weeks from surgery, would they consider doing a cardioversion, or is it tha once you elect out, do you no longer have that option? Maybe this is another difference between the US and British health care systems.
It's great to hear that you have finally gotten a date set. These final weeks will really fly! All the best to you and your family and feel free to send me a guestbook note, or email me (tom8hunt@yahoo.com) if preferred.
-Thomas H.
Paul Rose Hi Thomas,
Many thanks for the note and where do I start..
On videoing my surgery, the surgeon Mr We ... Read more
Paul Rose Hi Thomas,
Many thanks for the note and where do I start..
On videoing my surgery, the surgeon Mr Wells already has an amazing video of the surgery he is going to perform, it was a program special on one of the television channels in the UK http://www.youtube.com/watch?v=1duI_ycUORk&feature=related
It is definitely interesting to see the differences in the health care systems. I lived in MA, USA for 20 years so have good and bad exposure and pros and cons for both. The surgery costs if you go private appear similar and can be scheduled to be more convenient. My Private Health does not cover me for a pre-existing condition, it’s all in the small print, although in MA it would have been covered…. go figure. In the UK the procedures appear to be generally scheduled within 12-18 weeks or so on National Heath by the same surgeons who do it privately – so quality is same, indeed any complications seem to drop into the National Health. I had the miss/good fortune that my original surgeon had some problems which resulting in my surgery being cancelled 15 minutes before I was due to go to the Hospital. Not his fault, but I have ended up with a much more experienced consultant:-)Dr Wells has a long waiting list, but not many surgeons have done as many MVP repairs, so worth the wait. I could move the date out, but may have to get back in line.
As with you I’m not superstitious. By now I’m used to number 13’s and my wife just wants it out of the way. My father was born on Friday 13th at 1pm (1300 hrs) and we lived at house number 13. He also had 2 sets of valves replaced 10 years apart and all on the National Health. The second set was literally an emergency where he was admitted only hours after his medical and operated upon next day – in the good old days when it took close to 12 hours to conduct the operation!
I looked at the success percentages that stayed reverted when deciding against a cardioversion and it was not long until I was due to be admitted, so at the time moot, but I had not accounted for my surgery being cancelled and finding another surgeon. I discussed it with the Consultant who said I was not incorrect based (as I recall) on my amount of LV enlargement and severe regurgitation. It is good that yours stayed in SR on the first "shock" -- are you still in NSR? My understanding is the same as yours and the statistics seem to show that having the heart stays in A-fib increases the possibility of a blood clot forming – the risk is reduced by the a regime of drugs. As I’m within 3 weeks of surgery at this point I will just stick with the plan.
So for National Health versus Private, I have not experienced much difference in the quality and when you need it Specialist Centres run very efficiently and as fast as required. My scheduling has had much to do with how urgent it is relative to others. Not a hefty price to pay – in this instance the National Health system Dr has over 5,000 procedures and very good stats.
Thanks Again
Paul
On June 20, 2012...
Paul I also cannot speak for long term recovery but I had my mitral valve replaced along with a maze and have been afib free for five months now.
Paul Rose Thanks for the reply and wonderful to hear your results - I hope you continue to remain free and it b ... Read more
Paul Rose Thanks for the reply and wonderful to hear your results - I hope you continue to remain free and it becomes a really long time recovery!
Paul
On June 19, 2012...
Paul,
Can't speak for long-term persistent A-fib, but I did have two occurrences of it in Oct '10 and Dec '11, that were both resolved with cardioversions. I was told these were most likely caused by mitral valve prolapse/regurgitation which was discovered by the A-fib.
When I went for the surgery with Dr. Gillinov at Cleveland Clinic, he basically explained to us what you have learned, that surgeon's aren't sure if the MAZE procedure really fixes A-fib, or if the mitral valve repair is responsible for fixing it since the stress on the heart from regurgitation has been reduced. They are currently researching this as part of a 2-year study being done at a few top hospitals in the US (maybe the same study you were told about). I agreed to participate in the study, and had a 25% chance of getting a MAZE, 25% chance of gettting a pulmonary vein isolation (mini-MAZE?), and 50% chance of getting nothing except the atrial appendage clip (which is done for all three procedures). I was randomy selected to get the full MAZE. Its only been a month, but ever since I was 24 hours out of surgery, haven;t had any reoccurrences of A-fib (knock on wood).
I am required to do 1-min Holter readings once a week and then a 30-day reading every 6 months for 2 years. Not much of a commitment/distraction.
Hope this info is a little helpful. I assume they have tried cardioversions with you and that has been unsuccessful. Sorry to hear about the extended wait and wish you the best in getting your surgery done as soon as possible. If you had any other questions, please don't hesitate to ask.
-Thomas H.
Paul Rose Hi Thomas, Thanks, really helpful and it's always good to know that someone has tried this out before ... Read more
Paul Rose Hi Thomas, Thanks, really helpful and it's always good to know that someone has tried this out before. Fantastic news that you are Afib free, long may it last.
I think the study is a separate one, it's 50:50 chance of Mini Maze or control group. My consultant is really not convinced, and as you say not clear what is the driver. I'm still undecided even at 50:50
I elected not to have the cardioversion some time ago, the success rates I looked at where pretty low and at the time it looked as if my surgery was very close (weeks). The surgery was delayed due to my surgeon going out sick. I then found another consultant and started my next wait. In hindsight electing out of the Cardioversion was probably not my best decision - but you can't go back.
Thanks again
Paul
On May 23, 2012...
I'd had a few bouts of AF in the summer of 2005 but it was not until mid-October that I went into continuous AF and after a week ended up in hospital too weak to walk more than 20 yards at a time. Until that point I was unaware that I had a heart problem. They tried various drugs and in the end cardioversion which reset the rhythm. Investigations revealed MVP with approx 38% regurgitation. After a week in hospital I was sent home on amiodarone & warfarin. The operation was second week of Feb 2006, so I was on the waiting list for about 14 weeks (including the Christmas period when Drs on holiday). The doctors described the AF as a "cry for help" from the heart, indicating an underlying problem. In the last 6 years I've had palpitations and a few brief AF episodes when over tired or stressed, but these have all resolved themselves.
I did ask to be on the cancellation list in the hope of getting an earlier operation. I think it probably did save some time. I'm not sure what the current maximum NHS waiting time is for this type of operation now - I phoned Papworth several times to try to get a date. The waiting & not knowing is unpleasant. In hind sight waiting another month would have not made any difference to anything.
Luckily for me youtube was not full of "interesting" videos the way it is now.
Try to keep occupied and plan for what you are going to do afterwards.
I am still waiting and time is certainly dragging on the appointment but hopefully will hear soon. On list for 8 weeks now and no sign of a date. Trying to stay positive though.
On May 22, 2012...
Good luck Paul you are in the best hands.
I went into AFIB in 2005, ended up in hospital while they tried to stop it and that was when I found out that mitral valve was damaged. MVP/MR.
In Feb 2006 Dr Wells repaired the valve :-)
Still alive.
Paul Rose Thanks.... Can you share how long you were on Mr Wells list, I've been waiting for 6 weeks and coun ... Read more
Paul Rose Thanks.... Can you share how long you were on Mr Wells list, I've been waiting for 6 weeks and countin... also did the repair result in the Afib resolving?
On April 23, 2012...
Hi, Paul, another passenger in the same boat here. I'm scheduled for MV repair on May 11th with Dr. David Adams. He's a world-class leader in mitral valve repair and echoes exactly what you said -- you want to go to someone who has performed literally thousands of surgeries.
He also has an amazing web site:
http://www.mitralvalverepair.org
I learned a huge amount about our diagnosis there.
Best,
Selma Kaplan
Paul Rose Thanks Shelma, another great site (not for the feint hearted - no pun intended) is
http://www.chann ... Read more
Paul Rose Thanks Shelma, another great site (not for the feint hearted - no pun intended) is
http://www.channel4.com/services/videoplayer/popup.jsp?name=surgerylive_highlights_1
This is Mr Wells live doing a MVP repair..
My Surgeon in action,,, it certainly put some of my fears to rest
All the Very Best on the 11th
Regards
Paul
On April 22, 2012...
Hello Paul and welcome to the Heart Valve Journals. I agree that finding a specialist on MV was a good thing. I was offered to be part of a study to have the "Maze" procedure done to correct my AFib. When I asked my cardiologist about it he recommended I decline to be part of the study and that I should have the procedure done while they're replacing my mitral valve. I wound up going with another surgeon who told me that he would perform the Maze procedure. Essentially, they cauterize the heart, creating scar tissue, which then sends the electric current to sinus rhythm. I believe the ablation does the same thing in correcting Afib but I don't think it requires open heart, whereas the Maze procedure does. If you're having minimally invasive mitral valve repair, the ablation might be a better option but you still have to make the decision to be part of the study or not be part of the study. Please feel free to take a look at my journal entries and photos. I'm almost one month from my surgery. Cheers. Lily Cardlin
PS This forum is a wonderful resource for emotional support and practical guidance from others "in the same boat". I suggest you ask lots of questions.
The study in question is indeed on the Maze procedure. From the web most people who have had it appear to improve, the study is trying to validate it.
I really like the surgeon and have lots of confidence in him. His sucess ratios at repairing Mitral Valves versus replacing are amazing and he does not pad his stats by taking all the easy operations. He is very confident that he can repair and it will be open heart surgery as Mr Wells "does not do" non-invasive. I am on his list and looking forward to getting my date.
The repair is a real must for me as my father was part of pioneering surgery in this area in the UK 30-40 years ago and had his valves replaced twice. I witnessed his lifestyle and do not want a replacement. That said it is incredible just how much has changed in this area over the past few decades..
Good luck with the surgery
Cheers ..... Paul
Paul Rose I read f"rom surgey" too quickly and after reading your wonderful blog have to congratulate you on su ... Read more
Paul Rose I read f"rom surgey" too quickly and after reading your wonderful blog have to congratulate you on sucessful surgery and humerous blog
On April 22, 2012...
Hi Paul,
You are very smart for going with the dr who has MVP experience.
What approach are they going to take?
Lots of info on this site from people with situations similar to yours.
Mr Wells is going to repair the valve (a must for me) via open heart surgery. If I participate in the clinical trial I have a 50:50 chance that he will perform the "Maze" procedure :-) or get the placebo :-( I am going to request that regardless of the trial that I have the Maze
I've followed your progress - so glad you're doing better & better!
...Vicki D.
Paul