Paul's Heart Valve Journal

2 months post Op.......

September 16, 2012

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.

Had a couple of sneezing fits that certainly highlighted the sterniotomy had not completely healed. Not sure if that is why my Zipper line is still crusty in a couple of places, or if it’s due to Warfarin slowing healing - so still not waterproof! Had a runny nose which seemed to coincide with the final weaning from the Pain meds but not sure if that was a cold or getting of the drugs – My Primary Care Dr did not know either. Either way I’m off all the pain meds and only on the Beta Blockers, ACE inhibitors and Warfarin. Unless I kick the Afib habit it’s a life sentence, or until medical technology catches up :-{

Rehab started yesterday (queue for Amy Winehouse song), the two month anniversary of my Freddie Kruger day Friday 13th surgery … A couple of controlled hours at the gym, starting with an nice easy warm up followed by treadmill, stationary bike, weights, rowing machine, weights, and stationary bike, cool down and relaxation session. Still feel as if I have an anchor being thrown out behind me, but they have been in the heart business longer than I have – and I will be patient, a new experience. The automated pulse detection on the equipment struggled with the Afib. Heart rate steady at 120 ish during exercise with sudden excursions to 180 as it could not handle the Afib sessions. Good news on blood pressure side as it dropped 5 during the exercise, but I assume that is also helped by the Meds. Cardio Nurse was not sure if I would be able to return to SCUBA, and if I did, I might be depth restrictions – Is any one still SUBA diving after an Mitral Valve repair, if so are you under any restrictions?

7 weeks post op - met Surgeon and....

August 31, 2012

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 : -)

I feel extremely lucky to have been the beneficiary at an NHS sale, where do I start: I ended up with 8 new Kevlar Chordia, 5 sternum wires visible under X-Ray, a 3 for 1 deal on sections of my mitral valve repaired and Mr Wells plus his new Senior Registrar for my consulting review at Papworth yesterday plus an annular ring (also visible under X-Ray) and the zipper line to complete the set!

After the consulting review we drove from Addenbrook (a sister Hospital where Mr Wells uses consulting rooms) over to Papworth to deliver Chocolates for the Nurses, I started to look for Fiona and Kevin at the Critical Care Unit and several of the Nurses recongized me and greeted warmly as they remebered caring for me following my Freddie Kruger day surgery (Friday 13th), I asked how they knew me as I recalled that there were the only two Critical Nurses looking after me in one of three beds, what a surprise hear that there 32 beds served by over 200 nurses in that area, I'm not sure what proposals I made whilst sedated! I was then greeted by the High Dependency Unit nurses on Mallard with the comments nice to see you but what are you doing back here, then smiles and a catch up when it was a non-emergency chocolate deliver;-)) Both CCA and HDU were touched that we called in, and appreciated seeing their work standing in front of them looking much, much healthier. It was great to say thanks again to them.

5 weeks post op – instructions…. slow down!

August 17, 2012

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!

Apparently 50% of the Cardio Rehab Teams time is spent pushing people in rehab, the remainder trying to keep overenthusiasm in check – I fall under the latter! I need to change my approach to walking exercise – goal now is to walk shorter distances faster, concentrating on talking as we walk to the point where I have to concentrate on breathing and start to get breathless, then back off – so my strolls in the park are now to be replaced with quicker walks with Joan.

I have been using www.geodistance.com for finding out just how far I have walked. It is easy to use and can quickly work out the distances (yds, miles, KM) all you have to do is enter (mouse click) your route.

My strong painkillers are now down to 2x 30mg Dihydrocodeine per day with a personal goal of being off them completely next weepk. Next step will be weaning off the weak ones (currently 8x 500mg Parecetomol per day). The pain management regime has worked really well.

Fingers still tingling, but improving ;-))

All in all not a bad week!

4 weeks post op

August 10, 2012

It 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.

Fingers on my left hand are still tingling but starting to feel a little more normal – am I getting used to it, or is the nerve repairing?

Still do not like my trips in the car (to date only weekly 15 minute drives to surgery) as the bumps feel like I’m being gang tackled, I find these short drives really uncomfortable and am not looking forward at all to my two and a half hour (each way) trek to meet with the Mr Wells (Consultant/ Surgeon) on 30th.

I occasionally zone out watching TV, talking or reading and then realizing I have no idea what was going on for the past few minutes – I am blaming the drugs. Memory and concentration both fuzzy and it was a good job that I asked the Cardio Rehab Clinic to send written confirmation of my appointment as it is on the 16th not the 18th! Rehab starts with 6 weeks of 2x week visits to get me back up to speed.

Sleeping is improving, as I get plenty of practice! Looking to reduce the strong pain meds this week 

Walking up to 1.5 miles each session and sometimes twice per day (OK I did it once) – although the hills bring me to my knees and Joan has said I am not walking as much as strolling, just a little motivation!!

Have received a gold medal from Heather and Pat for my efforts to date – will get a picture uploaded.

INR now back under control at 2.2 and trying to get my Iron in place and out of Anaemia, as Joan ensures I get all the right foods.

Starting to enjoy the benefits of being an ex-regurgitator and looking forward to further improvement.

3 weeks post op

August 4, 2012

Three 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.

In addition someone has stolen all my cognitive reasoning, I spent an hour trying to enter a payment for car insurance on line and just could not get my password and numbers entered in the right boxes – so frustrating, will try talking to a real person tomorrow! It just might be those drugs!

On the positive side I have cut back further on the strong pain meds and my INR is back under control. Started the diet changes to try and increase my Iron levels to combat the anaemia. The Cardio Rehab clinic called me and set my first meeting for the 18th,I think, and just in case I’m wrong I asked them to send me written confirmation as memory is quite short right now.

17 days post op -last few days up and down

July 31, 2012

Upside, 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.

Pain management is working well, and is good enough to start to back off the Dihydracoedine now down to half dose.

Downside, apparently I am anaemic with my iron down to 12.1, My GP said that this could be due to the surgery and that I should eat red eat meat (I don't do this often), green leafy veg or a vitamin supplement. So Joan started my red meat regime last night. I will just have to watch Warfarin and the INR levels – INR at 4.1 last Friday although the Anticoagulation Clinic have reduced the Warfarin dose and will be rechecked again this Friday

Have times when I struggle to project my voice, only way to describe it is as if there is not enough air accelerating across my vocal chords and feel a little breathless? Getting up first thing in the morning can also be challenging, woke up last night doing an impression of a beached whale, on my front and well and truly stuck. After a little rock and role managed to right myself!

Next step is to join Cardiac Rehab clinic

Caught out again....

July 27, 2012

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. 

My recovery is moving along, not as fast as I want but still better than I could of imagined. Yesterday recorded my longest walk day so far at over 1600 steps, my wife alongside the whole way. Still felt the cold in 28C, ~85F. Taking it easy today as a reward.

I have beeen contemplating a late entry to the Olympics and started to wean off the painkillers in advance of drug testing just in case,  albeit a little too quickly and promptly paid for it last night with a kick in the rear.  Repeat note to self, only try and give up 1 pill at a time! That is the second time I have been caught out, I should have learned by now!

Received a suprise call from Papworth Cardiac Support team today to see if i was ok and how everything was going. Two weeks after operation and one week after discharge. Perfect timing as I had a few concerns that were quickly answered.  They really do have wonderful staff there, but I guess you knew i thought that already.

Photos and some self mis-diagnsosis

July 25, 2012

Posted a few photos of Hospital stay. Nothing gory and now somewhat surreal

NR at 4.1 oops.... quick reduction in Warfarin plus another visit for INR check scheduled for Friday.

Getting invincible days indispersed with the overwhelming teenager syndrome... do I really have to get out of bed..... 1,000 steps program stalled as it's just too hot to go outside, unless in the car with air con.

Had an emergency meet with my MD (Primary Care in US) yesterday. I was deep breathing and felt a strange sensation, difficult to describe other than akin to water mooving inside a sponge through my body as I inhaled or exhaled while lying down. Brain worked overtime on way too many potential causes,.. and lots of not so positive thoughts went shooting through my head.... My conclusion .. there must be fluid on my lungs.. not bad without a stethoscope,...... did I say I like these pain killers... MD checked me over. clean as a whistle, no fluid but you might want to try these laxatives as had not been for three days... after reassurance much calmer now and much releived (I know way too much information!).

Wounds looking good, and aches easing, except when chauferred in the car. Oversensitive, all the bumps are huge, mountain climebers seen practicing on some and much bigger that I recall.. did I say I like these pain killers.. Now need to start Agile planning for elimination of the meds.

Still have the tingling in my left hand pinky and ring fingers. Had it from the opeartion onwards. Registrar said probably some nerve damage associated with the sterniotomy and with time it would ease. Has any one had anything similar?

Looking forward to the start of the Olympics and proxy participation.

First days home, first steps out

July 22, 2012

Back 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.

Eating like a horse at this point but really do feel the cold. After the shower you would have thought I had been in mid winter conditions the way I shivered.

My excercise and stretch routine has started - my goal to add 100 steps a day (and modify if too much/ little). Longest walk was last night at 750 steps breaking a 1,000 step day for the first time.. Celebration was to sleep like a log !

Tommorrow is first INR check since leaving Hospital Friday.

Home at last

July 20, 2012

Just 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.

Going to bed early tonight to see if I can sleep past midnight at home, not sure if it was a coincidence that midnight was the last meds round and i was always wired for the next 4-6 hours. l

Day 7 - escape committee. - approved exit today !!!!!!!

July 19, 2012

The escape committe has been working feverishly on several approaches:

1) Keep pain levels under control allowing sleep and faster recovery. This allows more energy for...

2) Training to walk enough yards under you belt to climb up two flights off stairs. you will feel invincible at times, usually just before being figuratively kicked in the rear end for overdoing it.

3) Don't hand over total control (ok on some bits you have to, really difficult doing the technical surgeon Bits) - you are one very important patient who is part of the get you well team with lots of wants, but sometimes others needs should be addressed first

4) Listen carefully, tiny mistakes can be avoided and directions given by Consultants and other specialists to the ward staff. If you think that it was misinterpreted, do not get intimidated, it's easy to just ask and they will get clarification and you will feel more in control

5) do practice those annoying and sometimes painful breathing, walking and stretching ,exercises. Your body will thank you very quickly

6) realise you (the patient or the visitor) are on separate emotional roller coasters, and that some innocent things said can just be totally devastating to those close to you, tbut those blues will pass.

7) getting good news is often as just emotional as bad.

8) Health Care staff are tremendously undervalued. They do a fantastic job and take any chance to remind them of that.

9) having an independent advisor, Jerry, who you can trust and will cut through hospital speak and translate the answer into digestible facts

10) having a "Nicky" for her daily visits and keeping Joan sane at night.

Checking out of the Heartfix hotel is the end of the start of a new beginning. All my checkout papers are complete and now it's time to stand up and thank all the team at Papworth for everything they have done for me and so many others over this last week, They have been inspirational and are without doubt dedicated heroes.

Thank you also for the support of my friends, family, work colleagues and HVJ who have been invaluable and especially my wife Joan who has been my rock throughout.

Days 6 - in it for the long haul

July 19, 2012

Rough 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.

By the end of the day decided to keep an ECG on all night to make sure I did not go Brady again. In the middle of the night muscles started to spasm in my back. Got even better drugs (morphine) but they didn't help.. Pain subsiding, suspect it was break through pain as some of my meds were unintentionally cut back by me when asked 1 or 2 ... the irony, as i was fully intending to stay at max for at least a couple of weeks, full strength now and feeling much better.

Took the two flights of steps challenge from physio and flew through. Which only left the echo... Fantastic shots, hardly any regurge, can see some of the artificial chordia and yet again a woNderful,feeling. trying to get a couple to post on the blog.

Still in Afib, but did not like the efficacy of maze or ablation, and wanted to try the valve repair first, allow remodel and then let technology catch up on it. The Afib site has loads on maze, ablation and others, it is interesting to see that long term is often not well defined. And really why put more scars in now, when technology is moving so fast 

Next meeting with escape committee is Friday

Will the real day 5 stand up now please So I can escape

July 17, 2012

I 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 :-)

Just met the Mr Wells Registrar and I still have proximal Afib, but the valve repair has no leakage..  I am having the pacing wires removed today and will leave most likely tomorrow pm for R & R.

I will be posting all the Photos of exterior and theatre shotswhen I get home. But need Microsoft not iPad for that.

Thank you all for proving me and Joan so much support. It has been very assuring knowing I have the best in my corner I am literally in tears just now  I have been on a real roller coaster and it just hit me.

For all of you who are preparing. Hope everything works out as you expect if not better. Rember that it is light at the end of the tunnel and not a train, but occasionally surgeons making more tunnel for you.

Paul

Day 5 should really be day 4 after surgery as I can't count

July 17, 2012

Pacing 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.

Still have AFib, but it looks much better to a layman... and loads more energy to boot. Need the heart to remodel, but that will take months not days , I'm more than willing to give it a go.

All the catheters, drains and wires removal has been wonderfully pain free. The final wires come out tomorrow, then the homework starts. Still have the tingling in my left hand.. Hopefully that gets fixed too.

Training started, 2 loops of 150m and heart rate did not budge. Recovery great. Feel soooo much better

Pictures will be loaded after I get back home, unless anyone knows how to upload from the iPad 3 to this site?

Day 4 still - never more like singing the blues

July 16, 2012

Hardly 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!

Now all fixed and all but the pacing wires removed, get those out tomorrow and drp the fluids of as I'm up 4 kg (9pounds for US). Scare is over for now, can't help thinking what a lucky escape. Oh and just for kicks managed to 50yards and in planning with the escape committee

Day 3

July 15, 2012

Catheter 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 3

July 15, 2012

I'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.

The difference really is lday and night. Don't be put off by your watching others go through it. It's your journey, you have control. And this wonderful community to fall back on for support.

Stats B/p 103/72. Pulse 77

Day 2

July 15, 2012

Tough 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.

That first bed bath really does the trick, looking forward to getting the catheter out....

So stats BP 111/61. Pulse 72, and most the time in NSR... Will it last is the question

Day 1 after surgery

July 14, 2012

Mr 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.

Chest drains are out without pain (thanks to Fiona and Kevin), they used laughing gas :-). Have photo's but too dopy to load them - so will have to crop before posting

So many thanks to you all, and especially the teal at Papworth.


Paul

Final Countdown

July 11, 2012

Less than 24 hours to check in at the Heart Repair Hotel (AKA Papworth).

My wife came down with an upper respiratory infection last Friday and is now sanitising everything in site - she peers at me through a facemask as she coughs !

I have not succumbed yet and I'm really hoping that I don't. I am not sure how well I would handle surgery being postponed for a second time.

Hopefully Friday will be lift off and not Papworth we have a problem!

Pre-op and Salmon!

July 3, 2012

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.

Took a few attempts to find my B/P at 95/60 and pulse around 62 -- the wonders of meds. I did raise alarms with the Anaesthetist when I declared a Salmon intolerance. I used to love it but had a one bad meal and from that day on it turned me into a bivalve (vomiting and diarrhoea) whenever I eat it. The worst event ending up with admittance to ER for dehydration and ended up with 5 litres of saline pushed intravenously in 24 hrs! So what’s the issue if I do not handle Salmon well and have OHS. There is a connection…. The explanation goes along the lines… apparently Heparin is given prior to going on bypass to prevent clotting and a drug (can’t remember its name) is used after to negate the Heparin and that contains some Salmon extract. After additional tests to ensure I do not react to the drug it I’m now in the clear – best to get that out of the way before the operation - scare over as it would be some other non standard drug needed!

Now back to counting down to Fiday 13th….. oh and still avoiding Salmon 

Friday the thirteenth July -- a date with an MVP repair

June 25, 2012

Well 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?

June 18, 2012

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 question

May 16, 2012

I 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.

My consultant is not an advocate of Maze as there does not appear to strong clinical evidence to support the success claimed by Maze practitioners. He is running a clinical trial, but it’s a 50:50 chance that I get the procedure.

I have tried researching he web and have been following the Yahoo Afib Support group

http://health.groups.yahoo.com/group/AFIBsupport/

Most patients on the site appear to end up having multiple Ablations and even then do not resolve the problem – so many scars on the heart does not sound like a good idea

The results claimed for Ablations and Maze do not seem to stand up to clinical rigour. So I’m left with the conundrum to Maze or not to Maze, or wait for medicine to catch up a little more … hard to decide what to do. Perhaps more patience, but that would be like a leopard changing spots


If you suffered from MVP and Afib, then had valve repair did your Afib resolve itself?

Shoulder pains and meds?

May 5, 2012

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.

It all started 8-10 months ago when I went on the medication (ACE inhibitors, BETA blockers, Diuretics and of course Warfarin). I really wonder if they triggered the problem or are purely a coincidence.
My left shoulder and arm are uncomfortable most of the time at best and shooting pains when I overextend at worse - close to 7 out of 10 on the close to tears side, but then again I have yet to experience the cracked sternum recovery.

Having protected it too much I am apparently heading for a Frozen Shoulder, You can hear the muscle sinews creaking across each other as I shrug, stretch or just move my shoulders…. Starting physiotherapy next week, but still keep taking the meds

Playing the waiting game

April 22, 2012

Having 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

Consultant number 1: Went out on stress leave the day of my scheduled surgery, must have been the seven pages of questions at our first meeting - my wife cringing at some of them. Had conducted over 350 operations. Really pleasant person - do hope that everythin is OK with him. The surgery was cancelled 15 minutes before I was scheduled to leave the house en route to the Hospital,

Consultant number 2: Declined due to compexity

Consultant number 3: Great specialist but on Aorta and less so on Mitral Valve. After 30 minutes said she knew a great surgeon to recomend me to and did. At this point can not thank her enough.

Consultant number 4: Mr Frank Wells at Papworth. He has conducted over 5,000 MVP suregeries in his career. On his wait list but it is long - happy to wait though.

Currently trying to decide if I should participate in a Maze clinical study. The upside I help the medical research, the downside ... I could be in the blind group a 50:50 shot - really struggling with the answer..