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MVP, Regurgitation, AFIB
The Patient's Guide
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1st year anniversaryHi to all my HVJ friends, it has been a while since I last posted.
6 Months anniversary todayBelated Happy New Year to all.
4.5 months post repairApologies for not updating for a while, but not had much to Journal!
Post Zap report and I’ve got Rhythm….Yesterday I visited Papworth to have a DC Cardioversion – a synchronised shock to stop your heart and then let it restart in rhythm. For it to go ahead my Blood had to be within the INR 2.0 to 3.0 range for 6 weeks, now to say I cut it fine is an understatement as the blood test just before I was allowed to go to theatre came back at 2.0! The Junior Dr that was to perform the procedure (under supervision) was not quite in panic when he found out, but was not sure whether to move forward, a quick consult with the Senior Registrar and it’s a go! Next piece of fun came when the trainee Anaesthetist attempted to insert the Canula – two attempts and a great bruise later I’m ready to go.... My good deeds for medical training as a little repayment. Next two iced contact pads were then stuck to me, one to the right pectorial and the other to my waist on the left. Then General anaesthetic applied and I was out. While I was asleep I was belted with 200 Joules of DC current, to put that in perspective it’s about half that needed to start a large Diesel engine! After my heart was shocked, it rebooted into Normal Sinus Rhythm (no AFib) on the first try. Well I can now say that (time to sing along)…
Frank Zappa day scheduled.....I now have my Cardiversion appointment scheduled for 1st October at Papworth, over 2 hrs drive each way and I have to be there for 8am :-( for a day surgery that will be truly shocking! The zap is intended to kickstart my heart electrics into rhythm using a direct current electric shock and hopefully back into NSR. I will be under anesthetic when they apply the paddles and shout "clear"....
2 months post Op.......Got no Rhythm! Mr Wells has referred me to a Papworth Electro Physiologist consultant who has been out for a couple of weeks and is just getting back – I seem to have now collected a few consultants and seem to pick them that way! So still waiting to schedule in for a heart re-boot and hopefully back into NSR (Normal Sinus Rhythm). I assume that I will have to go for a face-to-face before that.
7 weeks post op - met Surgeon and....We met with Mr Wells and his Senior Registrar yesterday, it turns out that my procedure was more complex than anticipated, but I am luckily and extremely grateful that I had one of the best surgeons in the world who would not give up on the repair! He is very pleased with my progress to date. I will be undergoing a Cardioversion in the next couple of weeks to try and put my heartbeat out of AFib and back into sinus rhythm now that it has started to heal, literally shocking! A day procedure where I am sedated and shocked to hopefully get get to Normal sinus rhythm NSR. If it doesn't work I will have to stay on meds. That said he did say that I can expect to return (not straight away) to doing all of all my travel and sports activities I did in the past (from High Altitude Skiing to SCUBA and all my sports inbetween), only better:-)) I am also now cleared to start rehab and pleased to stop the Amiodarone : -)
5 weeks post op – instructions…. slow down!On Thursday met with Sue from the Cardio Rehab Clinic team. She has put me at ease over some symptoms and reset some of my expectations. Initially I will be on a 12 week “level 3 plan” starting after my meeting with Mr Wells (Consultant Surgeon) on 30 August, if he says OK to go – I am expecting him to. Sue made it quite clear that I need to slow down and not push as hard – the objective is to rebuild body and heart fitness at the same rate and not over push things, doing so is counterproductive. Sue warned me that I am likely to get very frustrated with not being able to push quite as hard as I want, but that I need to go steady and get there on a plan that will be optimised – I will comply! If Mr Wells clears me I get to meet my personal trainer week after next!
4 weeks post opIt is hard to believe that 4 weeks ago today (Friday 13th), I was just leaving the Operating theatre with a broken heart repaired. So glad I am not superstitious ( touch wood)! It feels like yesterday, but so much is changing daily although doing the two steps forward and one step back tango. Have to be careful if I have been sitting down for any length of time and stand up quickly or pushing it too much uphill on the walk – either can end up with a light head for a while.
3 weeks post opThree weeks post-surgery and still on the roller coaster. Still have the annoying pins and needles in two fingers (pinkie and ring) on my left hand. Feeling as if I am treading water and getting nowhere - not sure if I have been pushing too hard or not enough. The last two days I have taken easy and still exhausted, I have not felt like doing anything other than sleep, no energy and lackadaisical.
17 days post op -last few days up and downUpside, now at 17 days post op and walking continues to improve; made it to over 2,000 steps (just over a mile) in a single stint today (the last 700 flying solo – amazing Birthday present!) and felt good enough at the end to have continued walking:-) The exercise seems to help me get to sleep.
Caught out again....INR moved up to 4.5, Warfrin reduced to 2.1mg daily, retest appoint scheduled for next Friday. It used to be rock solid at 2.1 INR on 3.0mg. Talked to Papworth and they assured me it is OK, but to follow up next week.
Photos and some self mis-diagnsosisPosted a few photos of Hospital stay. Nothing gory and now somewhat surreal
First days home, first steps outBack home a few days now and my rate of posting the Journal has slowed - all to do with sleeping from midnight to 8am versus working on my iPad.
Home at lastJust had a three and a half hour ride back from Papworth to home in some abysmal weather and traffic. it usually takes less than two. Joan was a nervous wreck trying to make a super smooth drive in traffic with some real idiots on the road and a less than confortable passenger. She had intended to come back home midweek to get ready instead of staying. I am glad she didn't as she has been great support picking my spirits up with ease.
Day 7 - escape committee. - approved exit today !!!!!!!The escape committe has been working feverishly on several approaches:
Days 6 - in it for the long haulRough night. The first setback was to be told that I needed to stay for a couple of extra days while they run a study to see if I reacted to Biisoprolal and aminadrome. Both were being taken simultaneously with forisamidel. Have to forgive my spelling here. They want to iliminate the options goiing forwasrd. The Biisoprolal depletes potassium which seemed to have been a contributor. I am hooked to ECG and have pacing wires still in just in case I crash. I'm hoping not to.
Will the real day 5 stand up now please So I can escapeI know everyone was warning about there being the potential to get a little muddled, but this is ridiculous I went in on Freddie Cruger day for a zipper installation and removal of regurgitation and came out with that plus a mitral valve repair, the inability to rember what day it is AND I can't count to boot. So officially today in the UK (5 time zones ahead) is July 18 less July 13 = 5. I think it's time to start weaning of the other drugs while I can...... ok next week... I wasn't hallusinating, but all functions are severely impaired.. Hopefully normal service will resume soon :-)
Day 5 should really be day 4 after surgery as I can't countPacing has been turned off now on monitoring for next 24 hrs with a halter.... eating critical care food turns out is not bad after all. Occasional forays in the anti-vomiting drawer work wonders and paid dividends. As is taking all the meds to help my body sustain repair versus fight the pain.
Day 4 still - never more like singing the bluesHardly slept all night listening to to pacer beeping away. that and struggling to write the blog. Woke up with blurry eyes and bradytacic (sp?) pulse, alarms going off everywhere. You not supposed to have a 25-34 bpm, especially after surgery. Dr scared the hell out of me saying I would need a pacemaker. Tuned out that the furosemide removes potassium, and that goes to Afib and Brady!
Day 3Catheter out without pain. weaned off dopamine and just can't stop smiling. Fleetwood Mac come to mind singing "don't stop thinking about tomorrow"
Day 3I'm sitting or rather lying in CCU and listening to the rate machine keeping me in NSR. In some ways soothing, but can't sleep with a watch in the room let alone this incessant clicking.
Day 2Tough night sleeping, lots of fluids passed and lots of checks all night so much so that they had to supplement my potassium. Now the exact opposite. Staff really are amazing, great attitude, can't help enough.
Day 1 after surgeryMr Wells and his team did a fantastic job and as promised left me with a repair not a replace, just after 4 hours later fixed from Severe to none!. I was so utterly relaxed when I went down to theatre, in large part due to the HVJ community! I feel so very much better.already, it is incredibly humbling.
Final CountdownLess than 24 hours to check in at the Heart Repair Hotel (AKA Papworth).
Pre-op and Salmon!Today I had my battery of pre-op tests at Papworth. The whole team there were fantastic. I could not have felt more comfortable. All tests done followed by a Video of a typical stay and what to expect.
Friday the thirteenth July -- a date with an MVP repairWell I've got a date for my Surgery at last. Friiday 13th July at Papworth. Wondering if I should ask for a video - I'm not too superstitious and eirily calm..... Waiting for the nerves to kick in at some point, but currently just happy to have a date and hoping it does not get cancelled at the last minute again. Going for pre-check on the 3rd.
Recovery from Afib after MVP repair?Has anyone had a Mitral Valve repair and subsequently recovered from long term persistent Afib? I have been in Afib with MVP and severe regurgitation for a year now and wondered how often anyone escapes Afiib after surgery?
To Maze or not to Maze that is the questionI am in permanent Afib with severe Mitral Valve regurgitation, apparently as a consequence of my left ventricle deciding to enlarge. My conundrum is whether to elect for a maze procedure while my chest is open or just stick with the Valve repair and hope that my heart beats efficiently and hopefully without Afib if the ventricle reduces in size after surgery.
Shoulder pains and meds?My GP examined by shoulders and said no problem, but I know my body better than that. As most males do I promptly put off doing anything about it until my wife set up an appointment with her Chiropractor. He had worked wonders on her. So today I had my first visit with a Chiropractor to try to fix my shoulders before the still to be scheduled OH surgery.
Playing the waiting gameHaving worked my way through 4 Consultant Heart Surgeons over 8 months, I have at last landed with one of the best. Now awaiting the date for my Mitral Valve Repair
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