Penny's Heart Valve Journal

7 years ago today I was in surgery but is seems much longer and the memories have faded along with my scar. I'm so glad this website is still going strong, it made such a difference to me and my family at the time of surgery and the months post op recovery.
I had several episodes of AF over the last five years but nothing longer than 3 days until a prolonged bout in May last year put me back in hospital, but electro cardioversion sorted that out and my new meds since then have kept me in sinus rhythm. For anyone interested I'm on 5 mg bisoprolol (beta blocker) once a day then 400mg dronederone ( antiarrhythmic) and 5 mg apixaban (prevents blood clots and replaced warfarin) twice a day. Do your own due diligence and Drugs.com is a fantastic website to check for interactions, cautions and side effects. I am fit & healthy and still working full time. I exercise daily and love to dance rock n roll still...
I'm thinking of all of you who will be going into surgery soon and sending positive energy your way!
Love to all my HVJ friends out there.
Penny from Scotland

I really didn't mean to post again so soon but reading a guestbook sign in from a HVJ friend who is 4 weeks post op and bemoaning that he is only walking 2-4 miles a day prompted me to read my own journal again. I couldn't remember being anywhere near as active at 4 weeks and on reading through I had got that right but there was so much that I had forgotten. So I have copied and pasted from this site into word and saved as my HVJ diary. I bet that you are all super efficient and doing that anyway!

Well of course because I'm vegetarian! You probably have to be English to get it as spam is a type of processed meat here...Where has the time gone? I am feeling absolutely fabulous, working my eyebrows off, no recurrance of atrial fibrillation, totally drug free, you wouldn't really notice the scar at all and yes I do wear low cut necklines again! I will never forget the comfort that I (and Steve and Georgie) found on this website. Grace and favour to you all - I love you! xxxx Penny in Scotland

Getting an update from Steven (Calgary) reminded me that I haven’t updated my own journal…
I finally found a decent local cardiologist in Aberdeen and saw him last week for an ECG and echo. Valves are working 100% and he took me off the beta blocker and diuretic that I had been back on since February. My Steve keeps me on track for fitness and heart health – he oversees my 45 minutes on the stationary bike 3 times a week, walking the dogs 30 minutes twice a day most days, and TRX system for strength training. Yesterday I was out on the mountain bike for about 15 miles with no difficulty at all. I am so pleased with myself! Hopefully I’ll only have to see the cardiologist annually for a check up. I’m flying again 4 times over the next 2 weeks so will be able to add to my research data, fingers crossed I’ll be proved wrong with my theory of flying and AF.
For those of you about to have surgery, my best advice is to develop a network of friends on HVJ as quickly as possible – just make contact with anyone on HVJ, any where in the world, who has just had what you are about to have – they will help you and your family through more than you would believe possible. You are then in a wonderful position to pay it forward. Thanks again Adam for making this possible!
Best wishes
Penny (Scotland)

I missed the opportunity to update my journal for Valentine's Day AND 26 February (my one year anniversary mitral and tricuspid valve repairs and ablation). It’s because, apart from my scar, I forget that I was a cardiac patient! Business is frenetic, I’m walking hills, strength training and up until 5th February, I had been free of atrial fibrillation and all medication since October. Imagine my surprise then when on a trip to London one month ago I felt my heart jolt back into that mad rumba rhythm that I remembered so well. I had a cold (which is rare in itself) and we had only returned from a conference in Las Vegas the week before. We had congratulated ourselves on avoiding jetlag by fasting on the flight and only drinking water – it truly works – and we were feeling ready for a little business but mainly pleasure and catching up with friends for the weekend while staying in a 5* luxurious hotel (a plug for the Gloucester Millennium here). I had popped in to see my GP on the Thursday morning just to check that I didn’t have anything catching and he felt sure that I had nothing more than a feverish cold that was on the way out. On the one hour flight from Aberdeen to London I experienced a few dizzy spells and felt momentarily unwell but it passed and as I had felt something similar on our first day in Vegas I put it down to the virus that may have been incubating. Steve went off for his business meeting on the Friday and I opted to stay put after sending out to the pharmacy for some Beechams all in one for colds and flu. Well, I stayed in that bed until Saturday night with several calls to housekeeping to come and change the sweat soaked sheets. By midnight AF had kicked in and Steve made the emergency call for an ambulance. I know that you can imagine how panicked I was feeling but as soon as the paramedics arrived, I felt reassured - they were fantastic. Leaving the hotel on a gurney through the main lobby past the very full bar into an ambulance with flashing blue light wasn’t how I imagined I would be spending our Saturday night in London! Within minutes we were in Chelsea and Westminster A&E and I was looking at about 15 young faces in scrubs as they transferred me from the ambulance apparatus and hooked me up to their monitors while they neatly went through the admittance procedures and checks. Then it got funny, I couldn’t help laughing – they were all standing around the bed watching the monitors above me and they collectively gasped as my heart rate spiked at 260 bpm and then sighed with relief as in ‘troughed’ at 90 bpm. And they kept doing this gasping and sighing as they followed the AF pattern!!! I told them that they had warm hands but they had to work on their facial expressions! Georgie was due to fly to London on the Monday for business and was able to get on an earlier flight for the mad dash to the hospital early on Sunday. It’s horrible that Steve and Georgie have to go through this. The doctors and cardiologists never figured out what the cause of my fever was although they got really excited about our recent visit to USA, and tested for cultures but within 24 hours nothing had developed and my heart rate was back in sinus rhythm. They kept me in for another 48 hours before letting me go with my packet of meds, including beta blockers, although thankfully they substituted warfarin with aspirin. So, not as dramatic as Duane, but like him I’m back on the rounds of cardiologist, ECGs and blood testing. And like him, trying to figure out a single cause and effect. Steve is convinced it the Ephedrine in the cold meds but I have my own theory. When I look back over the 10 years that I have experienced intermittent AF the episodes have always begun within a day or two of flying flying. I’m not sure whether to believe that it is the physiological effect of cabin pressure, dehydration or stress – I always make us late because I am always working frantically up to the last minute before we have to leave - but I would be interested to hear from any of you that can make a similar link. I won’t ‘take it easy’, it’s not in my nature – but I can and do keep up my strength training and I will increase the duration of my aerobic workouts (but not the intensity until I am off the beta blockers). My left ventricle shows up on scans as enlarged but my valve repairs are both 100% perfect. My eternal gratitude to Steve and Georgie for their love and care, Frank Wells, my surgeon and our dear friend Peter Faber who works alongside Frank and is a constant source of support. And to my girlfriends Lorinda, Jac, Alex and Sue who are all amazing. And I'm so grateful to you, my friends from this HVJ community who are a continual source of inspiration. I’ll keep you posted! Lots of love and hugs xxxx

...I may keep turning up! Just a quick update as I went down to Papworth last week for an echocardiogram, chest x-ray and an intelligent conversation with my wonderful surgeon Frank Wells - it's worth the 900 mile round trip for that alone. He was so pleased to see me looking radiant (his words), off all medication, in normal heart rhythm and leading a full and active life 7 months after surgery. I try not to take my present physical and mental health for granted, but it's easy to do and it gets harder to remember just how ill I was 12 months ago - just my scar as a reminder really and Steve's well meant nudges if he thinks I'm working too hard and not exercising enough.

It was Cheryl's sign off that prompted me to visit my dear old friends on the HVJ recently and I was so sad to read of Lori's death. Our heartfelt sympathies and love to the family.

So, I have learnt a lesson and won't say goodbye again but til next time.

Love and hugs from Penny (Scotland)

Scots Gaelic for goodbye (isn't Google the best!). I have just passed my 3 month marker, feeling good, everything going to plan and I feel it is time for me to say 'fae ye well'. All of you have been fabulous companions on my journey over the last 5 months, I know that I, and my family, would not have bourne it so well without you all and of course none of us would have this support if it weren't for Adam. Thank you again.
I haven't got much more to add to my own story - I have an appointment with a local cardiologist next month to monitor my meds - I'm down to 20 tabs a day... but I should be off all of them in another 3 months. I see an endochrinologist in July to check on my underactive thyroid and my liver function improves each week (both problems a result of amalodorone). I haven't had an episode of AF for weeks and have had one more bout of pleurisy in the last 10 days but it hasn't affected my life this time round. I can walk and climb stairs at a fairly fast pace and still hold a conversation - my high heels are the only thing to slow me down now (guys be grateful).
For those with upcoming surgery, stay calm and strong in your beliefs and for those on the recovery road remember baby steps for at least the first 6 weeks.
Love and hugs
Penny (Scotland)

First, thank you Adam for featuring me in your blog, I am honoured! Steve drove me back to Papworth Hospital in Cambridge on Thursday to see Mr Wells for my 6 week post op check. We had stayed in an hotel the night before so I headed into their gym before breakfast at 7am, onto the treadmill (under Steve's watchful eye), and walked for 30 minutes at 5 km per hour on a slight incline. It wasn't too easy but I felt great afterwards. Then off to the hospital for a chest x ray before seeing Mr Wells. He told me that he was so pleased with my progress after what he described as a complicated operation, and he was clearly overjoyed that my heart was still in normal rhythm. I stay on all of my current meds for 3 months, and should aim for a training heart rate of less than 110 for exercise during this period. I will see a local cardiologist (a new one)in June and will probably be able to start reducing medication to nothing between July and September. We celebrated that night with dinner with friends and the next morning I got back on the treadmill for 30 minutes again - it felt soooo good! We came home on Friday with my S.African sister-in-law and her sister who are both keen walkers so Saturday morning we set off for a one hour walk and this morning 90 minutes on small hills! I really do feel normal! Oh and I have been sleeping on my side for the last week - no more snoring! So apart from a slightly skew blood result for liver and thyroid and still a tiny bit anaemic I am better than new. Thank you so much for your support, I wouldn't have done so well without you all. I will probably post next at the 3 month mark unless anything significant happens before. For those of you about to have surgery or in early recovery, stay strong, have faith and just follow everything that you've read in Adam's book plus the advice from the wonderful patients on HVJ! Love to you all xxxx

Couple of pics showing scar 5 week post op. I am quite proud of it and what it represents (I survived)- it's better than a t-shirt!

Thank you for all of your good wishes and love! I haven’t got round to the pin up pics yet but have been practicing different poses in the mirror and trying not too look erotic (erratic more like). The best news for me was that last Saturday my heart went back to regular rhythm and has stayed except for a brief flip back to AF yesterday. I had a minor set back with a bout of pleurisy this week but the antibiotics have sorted that out quickly and my breathing is a lot easier today. My latest blood tests still show abnormal thyroid results (have to meet with the Endocrine Team!!!) and Gamma-glutamyl transferase (GGT or 'gamma GT'). This is an enzyme that occurs in liver cells. A high level of this enzyme is particularly associated with heavy alcohol drinking. (the liver breaks down and clears alcohol from the body and this enzyme is involved in the process.) I DON’T THINK SO. NOT IN THIS CASE!
My weight has dropped down more than 8 kgs in 5 weeks but still on fairly high doses of diuretics. My one stint on the exercise bike last week resulted in all of 3 minutes at 50 rpm and still no walking outside because of the weather. Even the easiest exercise leaves me weak and breathless and I know it’s a Catch 22. I was feeling a mite sorry for myself until I caught up on everyone’s journals this morning and it really bucked me up - with the exception of Michelle – I am so sorry to hear what that bastard has done but even that news made me count my blessings all over again.
We had around 4 ft of snow fall overnight mid week, unable to dig ourselves out because of the drifts and no electricity for 2 days which proved interesting but Steve (and Georgie next door) managed with woodburner fires and camping gear -amazing how much we take for granted. It was very romantic after sunset with candles burning all over the house and the fire crackling. That reminds me of Dawn’s post – the answer I guess is whichever month you don’t need to garden in – my bet would be November!
I did get the all clear to drive from my GP this week but no inclination to go anywhere just yet and with a new SUV I need time to get used to it. Maybe on the drive down to Papworth on Wednesday I can take a turn at the wheel. It’s all motorway so should be easy. We are picking up my sister-in-law for the trip back, she is visiting from S.Africa with her sister and will stay with us for a few days. I have started making business appointments for week beginning 12th April, and some social catch ups – I have to get my life back on track! I have become boring! Will post next when back from Papworth, thinking of you all and sending much love your way.

Must admit I did have visions of being further on in rehab than I am but felt better after one of the cardiac nurses from Papworth phoned today to see how I was getting on and said just to start from day 1 again - ah pressure off! My doctor has been great looking after me but he does love taking my blood! My INR is still above 3 so I reduce the warfarin to 3mg tonight and now my liver function test shows irritation so I stop the amiodarone as of today and go back on Monday for re tests. I have my 6 week post op date at Papworth for 8th April and will have an xray and echo. Not sure about electro cardio version but have been told to take an overnight bag with me just in case. The digoxin has slowed my heart rate down so much that I can barely feel the AF, feels like a slow irregular heart beat now. I will get Steve to take a photo of my scar on the weekend, once I figure out how not to over expose! It is still icy cold here which put me off walking outside today, more snow is predicted. If it doesn't warm up I will try the exercise bike tomorrow, even if only for 5 minutes (approved by physio). It is an effort, I seem to be able to sleep all day and all night - I have to really give myself a talking to, to get moving.
Here in the UK they offer a guide to help in the goal for improved fitness as to when you can start/resume various sports post op:
Bowls - 8 weeks
Dancing - 8 weeks
Swimming - 10 to 12 weeks
Road cycling- 10 to 12 weeks
Racket sports - 12 weeks
Fishing - 12 weeks
Golf - wait 12 weeks before starting the full swing. You can walk the course and putt from 4 - 6 weeks
Driving - 4 to 6 weeks after surgery providing you get clearance from your doctor. The strap line is 'Remember - Action makes the heart grow stronger' nice one!
Till next time, you all take care and keep this club of ours going strong! xxx

Well, what can I say except thank you to my darling friends in this community of ours. Your support and prayers and good thoughts have done so much to keep me, Steve and Georgie bouyant over the last few weeks. I came home again last night after they were able to stabilise my INR, checked my thyroid again and got a 2nd opinion on my latest echo. There is still some fluid around the lungs and heart but they want the duiretics to do the job and not run the risk of draining. My thyroid may be out of sync due to the Amiodarone. Bearing in mind that this is our local State hospital, they haven't done too badly although I only saw a cardiologist once when I was admitted to CCU. They are a bit bewildered as to why I went all the way to Papworth for my surgery but after talking to the surgeon who came in to check my wound (it looks fantastic)he admitted that they only carry out 20 such procedures a year, whereas Mr Wells does that in a week. Mr Wells is back next week from Ethiopia where he is doing charity work, and I look forward to catching up with him. I had to go to the Docs this morning for my blood tests and Georgie and I took the opportunity of walking up and down the high street. Not far but it's a start over. I don't think that this set back was due to anything that I did or didn't do, just one of those things... Got some good info on when you can do what after heart surgery that I will post up tomorrow. Keeps our eyes on the horizon!

Not sure if it was a little too much, too soon...but soon after my last post, Mum went from bad to worse. Friday morning began with rushing her to the doctors and from there it was a speedy blue-flashing lights ride to hospital in an ambulance.

She has fluid in the lungs, inflammatory marker is high, and thyroid has gone to sleep...but apparently the last symptom is not unusual after surgery...all things considered.

It's not been pleasant, with blood tests for cultures taken 3 times a day for the last 3 days. We are hoping for the results tomorrow and a detailed consultation with her consultant - it is just here or does nothing but the bare minimum get done in hospitals on the weekend??

But today I am delighted to tell you that having seen her this afternoon, she is much improved and looks way too good to be in the cardio unit!

Fran & Capt Bill - Mum is thinking of you both! We look forward to hearing how you get on this week.

Love & prayers, Georgie

Hi Folks – it’s Georgie back at the keyboard for now. I have just caught Mum up on all your guestbook sign-ins - thank you thank you thank you! You make all the difference to her day and I could not possibly not post an update. Mum’s having a tough time at the minute as she has severe anemia which means there is little oxygenated blood circulating around her body which means she has next to no energy to do anything. It also doesn’t help that her INR is 1.3 and that her heart has to work even harder to pump that thicker blood around. Increasing the warfarin should ease that in the next day or so. AF persists, but we’re going to ask the surgeon whether the anemia could be a cause of this as an irregular heartbeat is a symptom of anemia.

Having gone in to hospital within the healthy range (12-14), she was discharged with a hemoglobin count of 8.2 (just 0.2 above the level requiring a blood transfusion). She saw our local GP on Tuesday and is on a course of oral iron tablets…unfortunately this is a very slow option of getting the iron levels back up and will take a few months. Her food diet is already rich in iron from non meat sources and at least her appetite has come back to something approaching normal.

BUT it’s not all doom and gloom! Mum is managing to walk up and down her 20meter hallway 6-7 times a day (too much snow and ice still lying around to venture into the forest), and today managed to have a very small team meeting in her lounge for an hour; however she was absolutely bushwhacked after that and slept for 2 hours.

Breathing exercises are a challenge but she is trying and will persevere. The recliner is an absolute must if you are one of those waiting in the wings for your surgery. It is a godsend and the only way Mum can get a few hours of solid sleep. Her wound is looking fantastic, with the top 3 inches very neat indeed. Of course the sternum is tender enough to be taking mild painkillers, but nothing time won’t mend.

Mum feels she is doing a little more each day without realizing it but is taking the time to rest. She hopes to be back at the keyboard again early next week.

Steve is taking strain but coping extremely well with the burdens of work and home.

Take care, love and prayers.

This is really aimed at those with surgery upcoming or my friends who want ALL the lowdown.

Overall the experience wasn’t nearly as bad as I had imagined it would be. I expected pain especially in the first few days post op – and I haven’t had any yet from the wound or sternum area. Removing the pacing wires on day 5 – now that was sore! The other uncomfortable bits were all cosmetic:
• I wasn’t used to wearing sleep clothes so nothing was comfortable. PJ pants get caught up all sorts of places when you get in bed then end up round your knees getting out of bed! I kept with the theater gown for the whole time and as I had a room with ensuite I didn’t have to spare anyone’s blushes.But that led to a bit of sheet burn from the starched, sandpaper like fabric that I had to sleep on (plan to give the hospital some feedback)
• In Adam’s book his essential packing list says pillow, and I thought that I knew better – wrong! If possible would recommend taking your own, it WILL contribute to your sleep health.
• Heightened sense of smell. This was the biggest contributor to my nausea – not necessarily the smell of food, that was bad enough, but the different perfumes and body creams that every member of staff wore. I kept my window open 24/7 and that also discouraged the staff from staying too long. They complained that my room was like a freezer!
• Muscle weakness – considering how fit I was in October and that I kept walking up to Zero day I didn’t expect the degree that my quads would ache once I started to walk from Day 1. My legs still feel like I have been on the first really long downhill ski run of the season. My abs were strong from situps and I am so glad for that as it helped that I could sit up in bed from a prone position without using my arms (OK Steve had to hold my feet down once or twice!)
• You may want to pack some disposable baby wipes, that cheap hospital toilet paper doesn’t help your comfort level none, plus it is a difficult spot to get to in the first few days when you are still feeling fragile!
• My long hair drove me crazy, it became lank and greasy really quickly and I couldn’t wear it ‘up’ as the back of my head was on a pillow most days. Not sure what the answer is, I didn’t want to get it cut so it is a case of ‘the grace to accept’.

The good things that I didn’t expect:
• How much the guest book sign ins meant to me, Steve and Georgie. I can’t thank you enough.
• The degree of pain free movement that I would still have upper body post op.
• I only coughed about 5 times in all, and was sick once. I stopped the anti nausea tabs as soon as it became apparent that it may be causing depression.
• Depression - this was such a totally alien feeling for me on Day 3 and 4. When Mr Wells visited on Day 5, he told me that he does try to avoid visiting on Day 4 whenever possible for that reason but he did have a twinkle in his eye so I think that he wasn’t serious!
• That no matter how punishing his schedule for the day (and sometimes night) Mr Wells always popped in with a sympathetic smile and a very gentle ‘how are you?’

What a wonderful feeling when I walked in the front door. We had a really smooth ride all the way and I am constantly surprised so far at how pain free I’ve been. As ever my personal support team of Steve and Georgie were fantastic. Steve’s sole job was to drive and Georgie’s was to look after patient and driver in that order. They both excelled. Steve was assisted by the top of the range Mercedes that we hired for the 8 hour journey…I wore compression socks, we stopped every 2 hours for loo breaks and a fairly fast (for me) walk round the carpark. We drank plenty of water and fruit juice. I am feeling fine, my appetite is back, no nausea and still no pain. I slept for 2-3 hours at a time last night and am quietly typing away before Steve wakes up and tells me off for not resting – but this is therapeutic and essential! Thank you very much from the centre of my heart for your guest book sign ins, you are all so supportive. I get happy tears reading them. I would never have imagined the positive difference that feeling part of a community online could make to your mental health. Facebook is not for me, but HVJ – wow! I am keeping this short but I am working on my compressed version of the last 14 days to post for those of my special mates on the blog who are signed up for my journal. I just love everyone this morning – ain’t life grand?

Pen slept well last night until just after midnight when her AF returned, yip its back, but the positive she was 12 hours without it and stands her in good stead for a re-try in 6 weeks time on a return visit.

Her HR is not as high during AF which is good. She got her discharge just after lunchtime today and has been resting in our rented house just off the grounds of the hospital. She seems more relaxed today (had her best friends visit), again it’s me who is tense trying to wrap her in cotton wool at any given chance!

Well she is lying up in front of me right now like Lady Muck in a zebra duvet and recliner ready for sleep, with that said Pen will be writing the next post on Monday evening once back home, thanks to all who have offered prayers and kind words during this testing time,

Kind regards

Steve

Another very restless night, not in too much pain, still a bit nausea and weak, 5kg down in weight (mostly fluid one would think).

Been fasting since midnight last night for the cardioversion this morning (not that she has eaten anything anyway). She seemed pretty calm considering, it was me who was on edge, the doctor spoke us through the procedure and off she went into OR.

The procedure had her away for about an hour, on her return normal sinus rhythm after one attempt, wow what a relief; even if her HR was running a bit high it was steady which we hope will settle over time.

She lay up in bed mostly for the rest of the day with some of that time on monitors. Tonight she had some crackers and hot water, had a short walk down the corridor and back, and then started planning her D-Day for tomorrow.

Again my heartfelt thanks to everyone for your ongoing support and prayers it means a lot, she can’t wait till she can get replying to you all in person.


With D-DAY looming I’m off to bed quietly satisfied …feels like Christmas eve …

Good night

Steve

Two steps forward today and one step back, Pen had a very restless night last night with very little sleep in between the coughing bouts the sweating and the uncomfortable bed!

She ate a bit of fruit for breakfast just so she could stomach her meds, she then had a physio session with the requirement before you get hospital release that you climb 2 flights of stairs, determined not to stay any longer in hospital she did it, very breathless but determined, go girl!

It was then back to bed to rest, very tied, not much to eat at lunch, a bit of boiled rice, then I turned up ready for the walk to feed the ducks just what she needed after running a marathon!

I organised a wheel chair and pushed her most of the way, it was lovely to get her outside into the warm sunshine and fresh air, she managed to walk some way then back in the chair and into bed.

Later in the afternoon nausea took hold; maybe it was just too much! Mr Wells (her surgeon) appeared unexpectedly to say he would be doing cardioversion on her sometime tomorrow to see if he could reverse her AF, just what she needs another general anaesthetic however she is keen but a little apprehensive.

She is certainly taking a battering at the moment, we read her the guestbook posts which she loves, she still has blurred vision which makes reading difficult but is itching to get back to you all ASAP, once again thank you for your prayers and ongoing support, it brings light at the end of this dark tunnel, thanks.

Good night,

Steve

Thank you to everyone who continues to offer prayers, posts and thoughts for Pen in her time of need, it is most appreciated.

Well this is the first time I am writing on behalf of Pen, it has been a very emotional time for Georgie and myself as caregivers and I guess more to come however good news today her pace wires were removed which on a scale in pain terms was a 9 out of 10, whew, well done Pen!

She is now machine free, with a bit of her old self showing through this evening. We are going to attempt a short walk outdoors tomorrow to see the ducks with a wheelchair as backup, not much calories going in at the moment so don’t expect much energy going out!

She has started her physio exercises, and if all goes to plan we should have her out of hospital on Friday afternoon ready for the 10 hour drive back to Scotland on Sunday, not looking forward to that!

Let’s hope tomorrow brings another small step in the right direction, thank you again so much for the posts, it really does mean a lot to us, until tomorrow, good night.

Steve

Penny says thank you so much for all your posts and prayers, it really means a lot. Right now she has blurred vision so can’t read them for herself, but we hope that will pass soon.

On the upside, Mr Wells visited Mum this morning and said that the wire jungle could be disconnected so: catheter out, dopamine out, a-line out but pace wires still in and compression socks firmly attached! Mum shuffled 100m this morning with the physio which was impressive, but a coughing fit this afternoon set her back some – incredibly painful. No spirometers here in the UK just deep breathing in, hold for 1 second, breathe out. She was up in the chair today as it’s better for the lungs.

Important tip when walking and sitting: remember to keep your head up as hunching over will ‘scrunch’ the wound and it’ll hurt when you try straighten up again.

On the downside: Still no appetite – a total of 5 mouthfuls of food the whole of today - very weak and rather Dopey (and Sleepy, occasionally Grumpy, and Bashful will definitely rock up if Sneezy arrives! But as long as we get to see Happy, I don’t mind).

Nausea continues to plague her not helped by a heightened sense of smell...and the Papworth diet continues to pile on the kgs. Total weight gain is up to 4kgs since she was admitted. We’re hoping for an echo tomorrow to check that the fluid is not settling where it shouldn’t be. X-rays were done today after the a-line was removed, as Mum had a tightness around her neck, but all looks fine.

Steve & I are trying to keep our spirits up but flagging a little today. It's a long journey ahead and we hope for a bigger improvement tomorrow.

It’s not the dopamine but the anti-sickness drugs that are making Pen so sleepy, so trying alternatives but no real change to her feeling very sleepy all the time and not being able to stay awake for more than 10 minutes or so.... Is that normal?

We also maybe whooped a little too soon about the AF as today her heart was back in AF but not as bad as it had been previously, so we’re still hopeful that it’s not permanent, but won’t know for a while yet. Pen’s still on what seems like a massive cocktail of various drugs:
1) Warfarin for the next 3 months
2) Heparin injections while she’s not able to move
3) Paracetamol and aspirin and other mild painkillers
4) Potassium (a very bitter fizzy drink)
5) Anti-sickness
6) Dopamine
7) Glucose drip

Pen made huge progress today in other areas, managing to endure a chair wash and sitting upright for a few hours at a time. But getting in and out of bed seems like an ultra-marathon and pretty exhausting. Still no appetite and she’s put on 2 ½ kgs on the Papworth diet so we certainly wouldn’t recommend that to anyone! Apparently weight gain is normal post op due to fluid retention...and she’s already on limited fluid intake to 2l a day.

Her O2 stats were low this afternoon so the oxygen is back as she is finding it difficult to get enough air into her lungs with the deep breathing.
At least she’s in a quiet room (you were right about the quietness over the weekend!) and is loving listening to the classical radio station on her headphones. We’re hoping for an even better day tomorrow – Steve & Georgie

Mum managed to sleep from about 11.30pm last night until 4am this morning and then on and off. The only thing she fancied for breakfast was jello and apple juice. The nausea is pretty bad, and sipping water seems to trigger it. Her chest drain was removed at 8.30am this morning but the pace wires, a-line and catheter are still in place with oxygen through the nose pipe. Pace wires are in place just in case her heart rate drops too low, and right now it’s rocking steady at about 100 bpm.

They stopped the morphine last night when the ventilator came out - Mum opted out of morphine for pain management due to previous bad trips. So instead she’s using paracetamol and tramadol (sp?). Her pain level is at a 6 with an uncomfortable ‘band’ around her chest (where her bra strap would be).

She can’t stay awake for more than about 10 minutes or so, shifting between wakeful and dream states. We think that’s the dopamine (sp?) which is standard protocol over here to help with keeping calm and restful. Mum’s had about 4 doses of anti-sickness drugs and again had jello and apple juice for lunch and supper! (I sense a theme here...)

At about 11am this morning they moved Mum from the bed into a recliner in preparation for moving back to her private room, and for those of you who haven’t experienced that yet, here are the dance steps to practice:
1. Move bed into 90 degree seated position and lower the bed.
2. Swivel legs and butt to the left until legs are hanging over the bed.
3. Butt shuffle to the edge of the bed (squeeze those cheeks!)
4. Bend knees as feet make contact with the floor (if your feet don’t touch the floor, make sure you ask them to lower the bed even more); and slowly stand up using your legs.
5. Don’t forget to breathe....
6. Take two steps over the wire jungle
7. Complete a shuffle twirl and lower yourself into the recliner like you would sit down on the loo. (I kid you not, that’s the expression they used).

We saw Mum again tonight and still very little change to her sleepy state, but she’s able to have proper conversations in between sips of water because of her dry mouth and we think she is doing incredibly fantastically well! Couldn’t be more proud. Until tomorrow...g’nite, Georgie & Steve

If this journal had sound you would hear me singing the Halleluja Chorus! It’s been a really really really long day, so Steve is sitting here next to me as we recap the timeline of today (it’s also for Pen to read later as she will want to know the detail), but firstly thank you so very much for all your prayers and thoughts and well wishes in Penny’s journal. We feel so special to have you as a part of this journey.

8.00 We left the hospital as Pen was being wheeled down to theatre. The registrar working with Mr Wells reckoned it would be 3 hours max, so we headed back to our little house for a break.

10.30 We headed back to the hospital to wait in the relative’s rest area (which is a bit ironic as in that situation, rest is the last thing possible!). At about 11.20 we saw Mr Wells coming out of critical care but didn’t manage to stop him to chat to, but we knew Pen was out of surgery by then.

12.45 They let us in to see Pen, she was in bed 1 and on the ventilator but had good colour. She had the usual drugs, drains and pacemaker but seemed to be resting easy. The medical staff said that everything had gone well and seemed normal.

14.00 We left Pen still sleeping and attached to everything. At this time she hadn’t shown any signs of waking up from the morphine induced sleep. As we stepped outside, the phone rang with a message from Mr Wells saying that the surgery had gone incredibly well and that he had REPAIRED the mitral valve AND the tri-cuspid valve and that the Maze procedure had worked and that she was no longer in AF. Woohoo, no replacement valve required! Which means no warfarin, no verapimil, no fruesimide (excuse the spelling!). It’s early days, we know, but are hoping huge here.

16.00 Pen was still as we had left her and still asleep. The doctor decided to reduce the morphine in the hope that it would help wake her up. At 18h00 they started a IV paracetamol to work in tandem with the reduced morphine dose, but even as we left at 19h00 there was still no change to her sleep state. A little concerning but all her vital signs were good, albeit with very low blood pressure.

20.30 We returned to find Pen excubated (sp?) and on an oxygen mask. She was still asleep!!! But snoring and frowning..probably at her own sound. We sat with her for an hour and as we were leaving she opened her eyes and said in a tiny whisper: “ have I been done yet?”. She was able to string a few sentences together, have a sip of water, smile, do charades/sign language and write a couple of words down – okay, so maybe we’re exaggerating a little but it was good to have her back in the land of the living!

22.00 It was time to leave Pen in the care of the amazing critical care staff for the night time rituals of rolling, bathing and bed change. And here ends the really really really long day. Sleep well.

It's all on the go this morning, in fact as I type! Mum was wheeled into theatre just after 8am this morning and should be in there for a maximum of 3 hours.

So you'll know how Steve and I are feeling! I just had to prise Steve's shoulders away from his ears what with all the tension and me? I'm just throwing myself into work. We're heading back at 10.30am to wait in the relative's area and I imagine it will be a few hours after until we can see her in ICU.

Mum was in good spirits when we left her, giving instructions and reminders - I have a written list! Will update again later today.

Well, you knew that I wouldn't relinquish the keyboard for long! Thank you for your prayers, thoughts and messages, they mean a lot to me, Steve and Georgie. Thought I would share the latest recovery recipe with you - pizza, cheesecake and 2 glasses of merlot! I was feeling really disappointed at having my surgey cancelled today but it is rescheduled for 8am Friday (GMT)which meant I could have a night on the town. Within half an hour of leaving the hospital, sitting in a really nice restaurant with candlelight and crystal glasses - I started feeling a lot better! I had permission to have the wine as I have been off warfarin for 5 days now! And after a 16 hour fast the food tasted out of this world...
It does mean that when I go back in tomorrow at 2pm I have all the tests done again and have to go through all the paperwork again in triplicate - well this is England don't forget. Mr Wells has been fantastic, he came in early this morning to say that he would do everything possible to keep me on schedule today but they had a shortage of beds in critical care plus a virus on one the wards which made them short of staff. Then tonight he came in to apologise but explained that he had 2 special cases which both took much longer due to the nature of the surgery. He had still considered operating on me tonight but felt that his team were getting tired and it wasn't worth the risk. Steve was so relieved as he didn't want me to be last in line for that reason. Someone else has been cancelled on Friday to make room for me and I do feel for them. For those like me that like the intimate details, the tests that I had yesterday (to be repeated tomorrow) blood pressure, weight, oxygen saturation, blood for cross matching, kidney & thyroid function, urinalysis, chest x ray and ECG. I had a good book with me, earplugs and eye mask (good tip Joe)and radio with headphones. Slept solidly from 10pm until 4pm then napped on and off the rest of the day. Steve and Georgie came for an hour at breakfast and lunchtime, then Steve stayed on til I was discharged. Georgie saved Amy and Richard's journal updates for me off line so that I could read them myself - there is no wi-fi access in the hospital as well as no phone signal. I am off to bed now as it's midnight but I am looking forward to reading through all the latest journal entries in the morning. Nite nite xxx

Hiya, Georgie here having wrestled the keyboard away from mum. Okay, so let me catch you up on where we are now. Yesterday the admission process went smoothly...right up until we saw Mr Wells at about 6.30pm...and he said that the surgery may not go ahead today. There seems to be a bottleneck in ICU and we won’t have the green light for sure until they actually wheel her into theatre. Limbo-land is not a very pleasant place to be, but when we left mum at 9.30am this morning she was scrubbed and sterile and in good spirits, ready to bounce with the orderlies at a moment’s notice. Mr Wells popped in just before we left and said that it looked like she was in with a fighting chance so fingers crossed it goes ahead today. Very strange to be ‘excited’ at the thought of open heart surgery being on track! But you know what I mean. Had another excellent conversation with Mr Wells last night on the choice between mechanical and biological valves – and after serious consideration, mum has chosen the biological option. Thank you for all your messages of support! I am under strict instructions to check the guestbook and journal updates every day and bring her your news, so keep posting. I’ll post again either later tonight or early tomorrow morning with outcomes from the day.

Arrived in London at midnight after a last minute panic when our flight was cancelled (and our carhire with it) due to adverse weather. After pulling the sympathy card “ I am scheduled for open heart surgery” we managed to get 3 seats on the last flight to Heathrow. Although Steve did turn a shade paler than me at the cost – we could have all flown to LA and back for the same price of a one way! I slept well and am showered, hair washed, nails clipped and about to enjoy a last lunch for a while – Georgie has made me crusty bread and salad sandwiches with fiery ginger beer to wash it down, my choice given that I could have anything I wanted today! Steve went out on his bike for a ride round and Georgie is working remotely from her office - they both have to do what they have to do to keep anxiety at bay. I just have to do my bit and get the job done now. Thank you for your guest book notes, I love reading them and will be looking forward to hearing about your escapades over the next few days. Georgie will take over my journal tomorrow until Sunday then I should be back at the keyboard all being well, otherwise you will see very brief notes from Steve if I am slightly delayed! Warmest wishes Penny

I think I am almost happy with my preparations! All items on my lists are checked off, I'll do a final business handover to Wendy and Robina tomorrow morning. Today is ipod day - getting my music and podcasts updated - and packing. The new recliner is in pride of place and Steve is allowed exclusive use this weekend cos when we come home he won't get a look in! Steve and I went for a longer walk with the dogs late yesterday afternoon and a big herd of deer were drinking from the stream.
Then I was up early this morning, before sunrise, and the sky was clear, full of stars and the milky way clearly visible. Now the sun's up and it is a glorious day. We are having a get together for dinner tonight with Georgie and Bruce (did I mention that they live next door, it's so great!)I have posted some photos. I have always been a very positive individual (thanks to growing up with my parents continual praise)and I am taking time out today to be grateful for my life and the love I have from Steve and Georgie, family and friends.
At this point can I please request that you don't send flowers and cards? Be kind to the environment and sign my guest book instead - it will mean so much to me.
To the fellow patients and caregivers from this website - you are all just amazing. I have learnt so much from all of you and I look forward to carrying on with my journal post op and into recovery. I want to be one of the boring patients who just plod along, nothing alarming or unexpected to spike your blood pressure! I am planning that it will be so uneventful that you will want to unsubscibe pretty smartly (yawn).
I plan to write up one more journal on Tuesday morning before admission, so until then, have a fabulous day. xxxx

Just seen the most amazing film of my surgeon with open heart surgery live on TV. Cut and paste the link into your browser:

http://www.channel4.com/explore/surgerylive/surgical1b.html

My admission is set for 2pm on Tuesday 23rd February with my surgery scheduled for 24th. I am expected to stay in Papworth Hospital for 7-10 days. There is no phone signal in the ward! Steve & Georgie will be texting close family and updating my journal as soon as possible after surgery. The three of us will fly down on the late flight on Monday 22nd.

I feel like I am being super efficient for someone else! I am doggedly working through my lists and so far I can check off:
Insurances - Medical (yes will cover all costs), Life (all in order), Travel (paid £90 extra premium to cover my travel worldwide in current condition for 12 months),Pet (they will pay up to £70 of kennel costs), Will and Living Will (need to go in this week and sign Power of Attorney)
Flights,car hire, kennels, accomodation booked.
Highlights done, manicure,pedicure and dentist booked for next week.
I have finished reading Adam's book.
Still to do: Buy recliner and new PJ's.
I have a stock of books to take with me but may borrow Steve's ipod with my favourite tracks on - a kind of dessert island discs. From my overnight stay last week I know how noisy the hospital is at night, even in a private room.
Thank you so much for all your words of encouragement. I plan to update again next weekend, so until then...

Wow, I have only been away for 3 days and so much has happened to all you guys and girls! Firstly so pleased to read that Duanne, Richard, Janet and Barbara are doing well. There are so many updated journals to read that I'm going to have to schedule 'journal time' into my usual working day! Thank you for your notes on my guestbook and yes Captain Bill, we do have more than 40 different types of Scotch, your friend doesn't lie!
OK BIG BREATH,ny date for surgery is 24th February!!!!!
I flew down to Papworth Hospital near Cambridge with my daughter Georgie for my TEE on Wednesday - absolute piece of cake, didn't feel a thing - wasn't aware of anything at all after they sprayed my throat and I was so worried about it! The anaesthetic was quick - didn't have the chance to practise my relaxation techniques. Dr Rana was just fantastic, her special interest is imagery of the heart, especially 3D modelling. She explained that my mitral valve regurgitation was moderate to severe and coupled with persistent AF and heart failure made surgery compelling. Also because of clear signs of rheumatic calcification of the leaflets that repair probably would not be an option. Because I had some periodic tightness around the chest (felt like I was wearing a tight bra when I wasn't at all)she wanted me to have an angiogram (groin to heart) later that day to check no blockages. It was clear. We met Mr Frank Wells, he was really kind and thoughtful, answered all of my questions (Georgie wrote his answers down) and said that surgery was necessary to correct the AF with Maze procedure and to replace valve. We discussed the mechanical vs biological valves. Because of AF I would probably have to stay on blood thinners for ever anyway so mechanical would be my choice as I never want to have to go through this again. I instinctively trust him and his team. He has carried out more than 3,000 valve replacement procedures and is recognised as being one of the best in the world. I am so fortunate to have been able to get him as my surgeon.
Was kept in overnight so that they could check that I was OK before flying home last night. My groin was sore! I think more from the contraption that they strapped over the wound for 2 hours after the procedure than anything else. They had warned me that if I started to bleed I had to lay flat on the floor and apply pressure - could imagine that sparking security at the airport! Couldn't have managed without Georgie with me, the crowds parted like the Red Sea as she ferociously wheeled our cases like there was no tomorrow and she had to do all the lifting and carrying of hand baggage on board. She encouraged me to keep my log of events up to date as I found that most of the day was like recalling a dream. I repeated myself frequently (what - dementia now to cap it all!). Had garbled conversations with Steve, as he had to cope with staffing issues back home as well as the worry for me. Before we left Papworth we met with the rehab physio to see if there was any exercises that I could do to get fitter for the op (no, just walking as I am now)and also the accomodation officer who showed us a nearly new house a 2 minute walk away that is for patient family use. Really nice - great kitchen and utility room,big lounge, bedrooms ensuite all for £20 per night. We can book the rooms for as long as we think we may need for Steve and Georgie (10-12 days), so just left to book our bears into kennels, book flights for going down and arrange to hire big comfy car for the 8.5 hours drive back. Although I had set my mind on late February for the op I can't believe that it is actually going to happen...

I have taken Adam's list and added some of my own, if you can see any obvious omissions please let me know!

Do you think I need surgery? Why?
What type of surgery do you recommend? Why?
Will PV Ablation be routinely performed also?
Are there any other less invasive opportunities to consider? What are they?
How long have you been performing heart valve surgery for?
How many surgeries have you performed?
Has anyone ever died from that surgery? Why?
What do you consider my greatest risks from this operation? I have heard that stroke is common and kidney failure a possibility – how do you minimize the risks?
What do you expect is the best outcome from this operation?
What else should I know about you or this surgery that might help me make up my mind?
Balancing the risks and expected outcome of surgery, is managing my condition by medication only a possible option at this time?
Am I taking the right meds and dosage now after what you have seen today? Verapamil 360mg, Frusemide 80mg x 2, Warfarin 5mg (INR 1.9)
Should I bank blood prior to op?
I had serious problems after what should have been straightforward surgery in 2008, discuss, do they have my medical history?
Scarring – can I have a plastic surgeon to close?
How often are post op visits required to Papworth?
We live in a remote area of Grampian Highlands - who do we contact post op if concerns?
Powerbreathe exercise – is it safe to do as a daily exercise right now to strengthen my lungs?
When walking pre op, how strenuous can it be? I can walk on the flat fine but hills are hard. (At rest heart rate average 135 - persistent AF - and can get breathless without exertion)

Sharlene has just emailed me 10 weeks post op! Can't believe that I have a message already - shows that I need to get a wiggle on to get the story up to present day - I do talk too much...

OK - I didn't want to ever go back and see that cardiologist again (it hurt even more that I was paying him as a private patient)meantime a close friend's husband (cardio thoracic anesthetist) was transferred from Aberdeen to Papworth Hospital near Cambridge and he encouraged me to send him a copy of my latest echo to show to the senior surgeon. The upshot is that I am going down to Papworth on Tuesday for my TOE (I think that's a TEE in US)and looking at mitral valve replacement in February. I'll let you know how I get on. The reason I wanted to start a journal through Adams web was that I have found so much useful information and questions to ask on these pages that I wouldn't have thought of. I hope that documenting my journey will also be of help, especially to women as we seem to be in the minority here!

My cardiologist was not due in until Tuesday 17th but the staff in the cardiac care ward put me on an IV of Frusemide (duiretic) with Digoxin and Warfarin tablets. Lung function improved almost immediately, slept all night for the first time in weeks (even in an open ward with 12 snoring women)and spent a comfortable weekend in the hospital. The nurse had to eventually turn off the heart monitor though as the alarm kept going with my AF peaks and troughs - it didn't bother me but it was scary for my visitors!
My cardiologist eventually saw me on Tuesday 17th and discharged me, telling me that one of his (male) patients was still flying planes and lifting bullocks (I kid you not)and that some people cope better than others. He finished by telling me to keep taking the tablets and he would see me in 2 months or so.

Had several check ups in the last month,I could feel that I had deteriorated during and after our holiday. The cardiologist confirmed that a trivial mitral leak had worsened but that surgery wasn't something I would need to think about for the next 5 years or so. Continued to feel worse, called the Dr out at one point as I couldn't breath and hadn't slept for a week. Every time I tried to lay down it felt like I was drowning. Both the Doctor and the cardiologist spoke to Steve and felt that I was becoming 'over anxious'. They would never say that if I was a man! By Friday 13th I felt that I may die if something wasn't done soon. Steve took me to A&E in Aberdeen (60 minutes away by car but much quicker than waiting for an ambulance)and Georgie came straight from her work and joined us there. Chest X-ray and ECG confirmed that I was in heart failure with significant fluid build up in the lungs, abdomen and legs - I has gained 7kgs in weight in 5 days. The medics were told to 'dry her out and slow her down'

16 October 2009
Woke up at 2am and could feel that atrial fibrillation had kicked in again (very fast irregular heart beat, something like calypso rhythm) Hadn't had an episode for a while, not concerned but started on baby asprin as a precaution. Once Doctors surgery had opened, phoned and made appointment same day for ECG. Also phoned cardiologist to check ok for me to fly to Spain next week for our holiday.