Barbara Helen's Journal

When the nurse came in later, she wondered how come my bed was so 'high'......( yes I know they can climb I said, but it made me FEEL better I said, when asked.) . Most of us are aware of the terrible fire in the London flats..... well on the morning of my admission when watching the news.... it was mentioned the various number of schools and hospital authorities at possible risk. I had mentioned this to my daughter who somewhat scoffed at my over imagination!!........ so.......?? on about the 8th night, the fire alarm goes off....... some minuets later, having seen everyone calmly owing about their duties......I peeped out of my sideward to ask if perhaps. We should now be meeting for a roll call at or nearest exit poīnt . " Oh No, said the senior member of staff.... we have just had a phone call to say that there IS a fire, But the ward doesn't need to be evacuated!!!, the alarm went on or a good 20 mins...... during which I let my daughter know that my 'ramblings' ad not been completely without substance. It wasn't the best thing to experience on any ward, least of all a surgical cardio thoracic ward!!, oh! and yes! We were told that someone making toast had left it too long and it had set fire...... but it was a good distance away, hence we didn't need to evacuate. we just thought we had all gone deaf when the alarm was finally switched off......... Phew!!! . .

Whilst self caring and waiting for my i.n.r to reach an acceptable level.....4-5 days.....I was in a side ward on both the step down and the final ward. The various designations of staff came and went, during which I got my meals ,drugs etc. The rest of the time...I became increasingly bored.....I watched a particularly big spider travel at on side of my ward to ......??it didn't come out the other side of the bed????!!

Once home, my joy at getting to sleep in my own little bed was sheer bliss. However the second night.... less so..... restless, fidgeting due to restlessness leg syndrome..... The third night, discovering aches and pains I never imagined possible........😓. I am taking sufficient pain relief, but I always wake at some stage, disorientated and woozy. I eat well in the day, and drink enough, . The Bowels........(shudder......haha , taking Senna, 2at night.They don't always work, leaving me feeling nauseated an bloated. My gp has written me up for some anti emetics the stop the nausea. She tells me my blood pressure is still quite low. The hospital have sent me home on Frusemide , but have taken me off my Amiodarone, my Anlodopine, and my g.t.n spray. on Friday this week, I visited for my i.n.r , and it was 2.6!!. My dressing was redone(the removal of one of the pacing wires has left a small sloughy area,.... but with the exception of the swelling at the top of the scar , it all looks good. I am told the soft swelling is fine and usual and will go soon. All things going as they should. Others can hear my mechanical valve..... but not me!!. I have had about three small intervals of palpitations since leaving hospital, and though worrying at the time ,have been thankfully brief. My daughter has her presentation of her Law degree at Oxford University on Friday 21 st.........its early days, but I hope I will be a lot more mobile and have lot less sternum and general discomfort if only for that one day!!!!😊, and I will be so proud. My family have, as I thought they would, turned up trumps, and nothing is too much trouble....... however, it Has to be said , that when it comes to those moments when it is just you ,your 'aches' and your trusty cushion...... haha..... you cant help but be sorry for yourself.Then tomorrow is another day you should feel so thankful to be alive, and so you bounce back in the only way that recovering heart valve patients DO. My little dog was sooooooooop pleased to see me again, and sensing my vulnerability, manages to offer just the right amount of love without hurting my already delicate person, haha. I am very tired now, so please forgive me for going now, but I will be back to update things. I will just wish all my heart friends the very best...... and like me, those of you facing surgery soon, IT IS worth going through, after all ,without surgery ......our prognosis can appear definitely grim.
With the surgery over, at least you can tackle each day as it comes,,. I found it hard to believe, as you do, but each day improves in one way or another, For every discomfort since my surgery, I have only to look at my family around me and I know that its worth every squeak and 'ouch', Keep faith, my love and best wishes, Barbara.xxx I hope to put a new photo on site soon..

Hello everyone, how are you all?.. As most of you know, on 3rd July I was admitted for Replacement aortic Valve and also reduction aortoplasty. Prior to surgery, I was set to have a mechanical valve, but which one??. Under anaesthetic the camera showed the Mitral valve was not so necessary to work on as the Aorta., which was more extensive than origanly thought. A 23mmOnX was put in... .Following the surgery I made a very good recovery and they were very
pleased with me, (apparently, my daughter tells me .......and anyone else that will Listen..... that I was hilarious recovering from the anaesthetic and because my voice had gone completely after the airway etc were removed, I was trying to converse with everyone I mime!!!. On my second day, I was taken to the 2nd day. Here, was positively ecstatic , I felt on top of the world...... haha. In the evening, with no pain, and feeling so good...... the nurse came in the evening to do my obs'.it revealed my temp was up and my blood pressure an O2. Were worryingly lower. When they were repeated ,they were worse........ yet I felt so good ( yes, I realise NOW that it was the remains of theanaesthetic, anyway, before I knew it, drips went back up tubes etc were back in, and they were taking. blood cultures etc. I felt sooooooooo ugh, But blood cultures were all clear, my temperature was down by the morning, ,blood pressure and O2 levels remained on the low side until discharge. I bounced back better. On the 5th day, I was told I could go home if my warfarin levels were at 2.3.....well of course......? in was 1.6, then 1.7 1.8, 1.5 and finally 2.3. by the 10day!!!!. However, on Wednesday, I was released with the inevitable T.T.Os. .

I am enjoying a leisurely Saturday trying to keep occupied writing a list of all the hiding places that I can find once they tell me its all stations go!!!. Underneath the bed comes to mind,buttttttt, far too easy to find me.......... . I am practicing mind over matter, and determined to get beyond this..... and look forward to a whole new heart healthier me. To every one else facing up coming surgery, I wish you all well , My very, very best wishes to everyone. Tomorrow....I. am going to Stratford-upon Avons River Festival, so that should help to take my mind of next week!!!!:'. Going with my eldest son, and my Cavalier King Charles ( Kai), Keep safe, keep well, and above all, Keep optimistic.xx

Hello everyone. I got my thyroid blood test repeated today, as the Anaesthetist wanted results as close to op as possible.... as it seems the Amiodarone I am also on is notorious for upsetting thyroid levels!!, they can go from one extreme to the other.... as mine has been doing. I stopped my Warfarin on Monday... as instructed.... to stop 7 days before surgery. Just been wondering , though....I have Osteoporosis of the spine, for which I take Aludroxin, and Vitamin D . Is the Osteoporosis likely to make my Sternum take longer to heal,????!!. I am hoping. That my meds will mean that my sternum will heal normally. (Xrays showed my hips are clear of Osteoporosis , so hopefully my sternum is........!!!! .).

Thank you to everyone for helping me sort my date of surgery and photo out..... not sure if I still have it right?????, hopefully!!!. Guess I will lose the cleavage after surgery, haha!! But at least its good to feel loved by so many of you....😊. Xx

I don't think anyone loves me on this site..... Why you ma y all ask????. Well!!, it seems that according to the sites up coming surgeries.........I am not down to have surgery on the 4th July 2017. !!!!!!, what do I need to do, to get a mention??????. please, 😞😖, please...... its bad enough having surgery coming up fast, but to not be included .......WELL!!!! ; I'm sad...😞😓😢😡😖. Am I the only one ????!!!. Good luck , best wishes an d prayers to all those mentioned.xxxx

Well ,it IS getting nearer 😖, The Surgeons secretary rang this morning ,to confirm that I am being admitted to Coventry University Hospital on the 3rd of July, ready for surgery on the 4th JULY!!!!,. She tells me that I need to still ring the day before(just in case!). I am also told to stop taking my Warfarin one week before surgery. I am having my I.N.R checked on Thursday this week, because it was 1.6 on Thursday last week so I have been inn more Warfarin since then. Just off now to check on the hospital bag.....😐😓,.......?and the countdown.......I think it really sink in , once I get my letter of admission which the secretary has told me is now in the post .......😐😞😓.xxx

Hello heart colleagues, I had my second dentists visit yesterday....... and should have the all clear by next week. Today it was the trip to my local surgery ......2 separate appointments. When I had my pre-op, the Cardiac Liason Team said my Thyroid levels were too high when I had bloods done at pre-op......sooooooooo, first app was for full bloods to check my thyroid levels, and because I am boarder line diabetic , I had my blood sugar checked, but no results yet. Appointment 2, was for my I.N.R . Last week it was 2.0 , but today....I was back down to 1.6!!!😒. My target I.N.R is 2.5., So its back next week for it to be repeated....... after an adjustment to my Warfarin. Meds. I am watching what I eat...BUT!!!, still eating like food is going out of fashion...( better watch my weight next...haha. Oh, and I am still chain chewing Imperial Mints...... help!!. How much longer till July 4th anyone????...........

Hi everyone, I have just updated my story......... having. Just read. It back it has the wrong date of surgery????!!! and WONT let me correct it?????, it also wont let me put in that my surgery will be done at the Coventry University Hospital, Warwickshire. Is it because I am from Great Britain...... and that my surgery is on JULY 4TH. ( Independence Day ). I find a certain irony in this, because as on that day...... my body will be working independently of my heart for at least an hour??????....xx.

Hello fellow heart patients, I hope that each of your journeys are relatively trouble free, and any 'hiccoughs' being sorted out soon. I am busy trying to get in peak condition for my pending surgery( not that I am ever going to be in peak condition with a wonky heart... haha,😖.) Packing in my bag , all the 'useful' bits and pieces I might need......... which may cause a hernia with its weight ( I wonder if they can fix that at the same time??????. Did any of you have a 'yearning' for eating something different to your usual food..... but you don't exactly know what????. I feel restless, but if I start to do things, I come up against being breathless and sooooooo tired 😔. Well, enough of my meanderings of a pre-surgery patient, I am off now to continue chain sucking my mint imperial!!!....... no, I have never smoked, I just cannot stop sucking mint imperial!!!........ For any concerned readers out there ,who may be worried about the possible laxative effects......I am finding my amiodarone has the opposite effect!!!!!. so I guess that is a plus.?????. My love and prayers for Cheryl, Debby, Marie, Martha ,

Thank you to all of you, each and every one, for replying to my questions. Sometimes you don't like to ask in case your asking a seemingly easy question, however, as I am sure so many of you WILL agree, it is such a godsend to have so many friends who can put your mind at rest.

After finding out that I am having a mechanical valve........( I'm told they really ARE much quieter these days!!), I was reading that someone on the this site found it a problem at night and needed to use her pillow to ' cushion' the sound. Can I ask anyone else if they find times when their mechanical heart makes them aware of its presence......??, and the interesting, even if obscure, ways they ' shut out the noise'.. I am happy to go ahead, after talking to my surgeon..... but..... fore warned is fore armed so they say... haha. Please help me to know if I will have to resort to being fitted with a silencer too. How much are the family aware!? haha???!!!

After finding out that I am having a mechanical valve........( I'm told they really ARE much quieter these days!!), I was reading that someone on the this site found it a problem at night and needed to use her pillow to ' cushion' the sound. Can I ask anyone else if they find times when their mechanical heart makes them aware of its presence......??, and the interesting, even if obscure, ways they ' shut out the noise'.. I am happy to go ahead, after talking to my surgeon..... but..... fore warned is fore armed so they say... haha. Please help me to know if I will have to resort to being fitted with a silencer too. How much are the family aware!? haha???!!!

Hello heart friends, Yesterday was very busy and tiring, My daughter and I arrived at Coventry University Hospital ready for my 11 am app't. First stop was to book in at the clinic. where it was height, weight, and a swab of nose and groin. Out into the clinic we were almost instantly called in by my Consultant.... Mr Parmer. Introductions over, this very pleasant and approachable gentleman..got started asking me copious questions., and then an examination of my chest. THEN the decision making......😖 , questions, .....😒. Well, it seems that I am having an Atrial valve replacement. a repair is out of the question at this stage, ..Using a mechanical valve. I hope mechanical valves really are much quieter these days??????? . I am already on Warfarin for life, so I guess it was the obvious choice.. haha!!. I also discussed the Ross technique, but it was explained that this wasn't an option in my circumstances. My consultation at a close, he handed me a packet containing lots of forms that all had to be signed off, once the respective tests had been performed. First stop.....E.C.G. The very pleasant operative, trying hard to get me to relax??!!, Strange....I didn't FEEL anxious , but given that not 5 minuits before I had just had an in depth explanation along with diagrams on how my surgery would be done,I guess it was only to be expected. She noted at the top of the respective E.CG form, that the enclosed result was the best that could be achieved given the patients nervousness!!!!!. Next it was off to XRay. Here, it. Was on with the gown, and a chest XRay.......get dressed and then on to the Respiratory depth, where with a tube in my mouth and a peg on my nose, I was asked to take a deep breath in and then hastily blow out.....??. After various attempts where I either left too bigger gap between the in an the out breaths, or that my tongue was in the way........., another form was marked down as the best that could be got after varied attempts. I was feeling a bit 😓 by now, but it was then off to the haematology depth to have bloods done.... a lot of bloods....... . on arrival, we were called in an told to go in the curtained cubicle bay 2. an anxious wait, when a nurse appeared and asked what we were doing and had we actually been called through????. Apparently, the girl who had called us through, but then got called to the office...so I had been left under the radar...haha. Tests complete, we now had to make our way to the first floor, the Coronary Care floor. We meet the ward sister , called Lisa. Having handed in the test results, I was give another packet in its place, this time with information about forthcoming surgery, breathing exercises to practice in the weeks spent waiting. Lisa asked more questions.....(apologising that I may have already answered the same in other departments,,,,,,). Everything was well explained, and she told me she looked forward to seeing me when I was admitted. I was given the chance to raise any concerns and then .........head for the exit..... somewhere...... if we could only find it!!!. We had managed to find all the relevant departments,...... so how was it, that now we could escape..haha...... we got ourselves lost....... . Well, after, once we finally made our way out..... my daughter and I had a much deserved meal and then a quick spot of retail therapy, . After a journey back home , me to Wellesbourne, and my daughter to Northampton, .She went back to revise for her Law degree, and me?????......a much deserved sleep in the arm chair with Cavalier Spaniel snuggled close by. A quick phone call from daughter, lets us both know we are back safe..... then its back to sleep...haha!!!. Watch this space for up and coming date of surgery?????..

Hello fellow heart family, on Monday the 8th May, I have my pre-op, when I get to me my surgeon for the first time. Also I will be having blood tests , e.c.g, chest Xray, and echocardiogram. Along with my appointment came a very comprehensive questionnaire which includes everything you could wish to ask about the surgery with appropriate gaps too fill in the answers as you go along, and any thing else you might need to know. There is an opportunity to visit the I.c,u, etc , so you can familiarise myself with your wards, staff etc. . I know that you would generally take a family member or friend with you because there is so much to remember ,and of course they can offer much needed support. However, this is the first time I have been told that IF I DONT!!!! They may refuse to see me 😞!!! My daughter will be coming with me as I am divorced. She will be coming armed with folders and revision notes as she is in the run up to doing her Law degree at Oxford University, With a proberbility f having to do lots of waiting around whilst her Mother is dually checked out....... she hopes to revise...... bless her. When I have my surgery(as yet, date unknown!) she may be in the thick of exams, but still intends to visit. Whilst my eldest son will take time off work to look after me, run the home, and try to explain to my little Cavalier King Charles.... that his mistress wont be around . Walkies, cuddles, and company will be his task !!haha. My other son will be visiting and doing hospital phone duties......( he runs his own 3 business's ) and so there will be major upheavals ahead........... They are all remarkably. capable..... so I shouldn't be stressed........ well, that's it for now......I will let you know how I get on, next week.x😓😖.

Hello everyone, I am waiting now to see the surgeon and then have surgery for A.V.R. A very good friend of mine had this heart op lasts year. I will be under the care of the same Consultant....... although, she actually was put on a heart/lung machine.....(which I am quietly dreading the thought of.......😖), she has told me that this Consultant does 'beating heart' surgery!!!!. I understand that recovery is often quicker in this type of surgery, but if I turn out to be an appropriate candidate for this, can any of you tell me what this involves???. I will of course be discussing this with the Consultant, at Coventry Hospital, Warwickshire. Have any of you had beating heart surgery..???. I would be really grateful from a patients prospective.

Had my angiogram yesterday, everything went well. I am still going to have to have my aortic valve replaced, but no other blockages or problems showed up. My Cardiologist has now referred me to my Heart Surgeon at Coventry Hospital, and the ' wait' . My Cardiologist has taken me off Flecanide and started.me on Amioderone!!!!......I don't know why??, my Flecanide was giving no problem , since starting it together with Warfarin 18 months ago. Now it would appear that I must cover up in day/and sunlight...... wear hats....... apply generous amounts of factor 50 !!.....just what I need for summer I don't think. I am on warfarin, AND thyroxin ......both of which will be effected by the Amioderone!!!???. Can anyone tell me if this is usual prior to impending surgery.....I thought it was only prescribed afterwards?. On the upside, my angiogram went just as it should, and at least I only have to have an A.V.R as no further blockages or problems found. So, basically apart from my new found need to avoid sunlight/daylight ⛅and have discovered I have as of this morning...lost my sense of taste!!!, I'm fine...... haha 😂 ☀🌄. my angiogram took an hour, then two hours rest and orbs, a further half hour sat out of bed, and then if orbs ok (they were), I was allowed to get dressed and head home....... minus the delightful paper knickers , which are a must for every self respecting angiogram patient........😂😉.

Hello, I'm Barbara. I was found to have a mitral leaky valve whilst having a routine check for my under active thyroid. Over the last 12 or so years, I had yearly echo's and saw my Cardiologist at Warwick Hospital, U.K. As the years passed I have steadily become more tired, and more breathless, until more recently, when I began having increased breathlessness, and increased tiredness, and .......a steady ache across my shoulders and down to. My left elbow.......!???! . in December last I had my yearly echo..... followed by a check with my Cardiologist. My aortic stenosis ( has.now gone from moderate to severe. The gradient of the valve has gone from 54 to 72. The mean gradient going from 32 to 49., however, I apparently have a good systolic function. I do have ventricular hypertrophy. I have high blood pressure too, . He asked me too sign on the dotted line for consent of an angiogram. My prop for my angiogram was on the 16th of March, and my angiogram is on the 30th March and is being done by my Cardiologist. I believe he will then decide what else if anything needs to be done in surgery, at which point I will be transferred to they surgeon, either at Coventry University Hospital or Birmingham...... depending on the type of heart surgery I need. My reasoning I give myself to reassure myself, is that if my uncle (and Godfather) could go through two heart transplants 7 years apart, the second lasting till he passed away a good many years later from natural causes....... then surely I can cope and recover from ' standard' heart surgery too. (if Adam Pick is interested, or anyone else, my uncles heart transplants were performed by Mr Magdi Yaccoub.).

Hi I'm Barb, I have a pre-op on Thursday 16th of March 2017, and then an angiogram on the 30th March. As a retired nurse of 66, I know I am supposed to be more cool, calm, and collected about this ......BUT you have heard the saying of a little bit of knowledge!!!!!..... so it has to be said that I am quietly panicking...... haha, I know......I shall now be on the receiving end. I am so pleased to get to know you all, and though I don't have my surgery date. (though an aortic valve is a certainty.... but bypass etc, only the Angiogram will tell.......). love and best wishes to you all, Barbara. Xx😖