Ros aka Sivakami's Journal

Hi, I wonder if anyone amongst you has any experience or helpful advice/info with regard to my current situation??? That would be very much appreciated! It\'s been almost 4 months since my surgery and I got back from India in mid August feeling pretty brilliant! But just to fill you in with subsequent events: since my surgery I had my heart rhythm go irregular (AF = Atrial Fibrillation) TWICE at 3 and 4 weeks intervals. (Prior to my surgery I had a very occasional \'Atrial Flutter\' which I had been told years ago was nothing to worry about.) AF is apparently quite common, particularly after surgery and if it is \'recent onset\' can often be reverted by cardioversion (electical shock treatment) So I had cardioversion twice and after the second one I was back in normal \'sinus rhythm\' for about 5 weeks and back in the UK when it happened again! - I woke up and my heart started racing in the middle of the night and was very loud and irregular again! Dr Jawali, my heart surgeon, who had kindly offered to continue monitoring me by email & phone, suggested to increase the Amiodarone which hopefully MIGHT get the sinus rhythm back (I am also on Digoxin, Dytor (diuretic) and Fecontin (iron)...however, almost 3 weeks later, although the symptoms are reduced by the amiodarone, the heartbeat is still irregular and I have to decide whether or not to have a THIRD cardioversion here in the UK. However, it MAY be that as I had \'Atrial Flutters\' before and due to the trauma & handling of the heart during surgery, my heart will not respond much to this third cardionversion either and/or return to AF again after a few weeks as before... If I go for a third cardioversion, then I understand it\'s the sooner the better, before the heart gets used to the irregular rhythm...so this could well be my last chance - before I accept lifelong medication on sinthrome (like warfarin or coumadin) and digoxin and verapamil! Having looked at interactions and side effects of taking these medicines long term, I am feeling rather \'disheartened\':) and am turning to \'my heart valve family\' for hopefully some good info/advice with regard to (1) the decision I have to make and with regard to cardioversion (2) taking (or not taking?) the lifelong cocktail of medications suggested for Atrial Fibrillation or (3) maybe any other options??? NOT treating AF at all apparently means an increased risk of stroke - although I would be in the lowest risk group, not having anything else wrong with me so far. I would LOVE to hear from anyone with any useful thoughts/info at all! X ROS X

Hi again! I know, by now you\'ve probably ALL given up on me ever posting more info in my Journal but here I go: I am happy to let you all know that the bladder infection disappeared after the course of antibiotics, and I\'ve felt much better since then (no doubt, thanks to taking loads of probiotics and vitamin C - thank you for your support & advice, Don and Fran!) Coming back to a more detailed report of my surgery on 26 May: First and most important of all, with regard to the remark in the message posted on 28 May that my \"mitral valve surgery took longer than expected due to some complication\". I checked with Dr Jawali who said that this was not at all the case and was probably due to some \'information gap\' or miscommunication. In fact, mine was a \'classic and straightforward case\' and the actual surgery took about two and a half hours. After being anesthetised various check-ups & tests are normally done and you are sometimes left waiting for some time before the actual surgery and, then again, after the surgery is completed, which accounts for the extra time in the OT. At about 1pm I was shifted from the Operation Theatre to the Cardiac Care Unit - CCU (or ICU) and at about 3pm I was apparently still on the ventilator under the influence of anesthesia. I was moving my head a little and was expected to return to normal consciousness over the next four to five hours, which I did at about 7pm that day. At about 10.15pm I was taken off all life support machines including the ventilator. I had 2 nurses allocated to me at all times while in the Intencive Care Unit and felt I was under constant excellent obervation & care and everyone spoke sufficient English to make sure that my every single need was taken care of! Plus there seemed to be a very relaxed atmosphere with plenty of smiles around... which you\'re very sensitive to when in a vulnerable situation like that.... On 27 May, I attempted to walk a little - I recall initially having some problem with my digestive system which felt \'totally blocked\' but after a dose of \'Cremaffin Plus\' (a laxative) all was resolved within 10 mins and I was moved back to my \'Royal Suite\' on the 6th floor. I must mention here the amazingly comfortable Alpha-air-bed/mattress that I was kindly allowed to bring with me to my room from the ICU on my request. I have no idea if this is commonly used in UK or US hospitals but it certainly made all the difference to how I felt - no backache or discomfort at any time (which I had actually expected). Looking down at myself was not too much of a shock - the main wound/scar was hidden from view under my right breast with a couple of little tiny ones from the drainage tubes. I was obviously feeling very weak but was pleasantly surprised at how (relatively speaking) little pain I had and how much movement in my right shoulder there was. The most uncomfortable thing of all (I\'m not joking) had been that I had contracted a cold/cough 2 days prior to my surgery and had frequent coughing fits which were very painful(although one of the physio exercises was coughing - so that took care of that!:) which was in addition to the sore throat from all the tubes. However, thanks to my famous \'secret magic\' H2O2 treatment (gargling with a diluted solution of it and putting a couple of drops in each ear to kill the infection) which Jagadish managed to locate for me, all that disappeared in less than 24 hours and made my life much easier. So, as you know, I was discharged on 2 July and moved to The Woodrose some 2km from the hospital where I still am and loving it! I\'ve had several follow-up tests and changes in medication according to the test results. At one stage I was low in iron and then potassium (the latter from the type of diuretic I was on which was subsequently changed). Then on 30 June - I had just extended my stay by 2 weeks - my heart beat turned quite irregular again which I did have prior to my surgery, but then only the occasional flutter - a good thing I was still in Bangalore because it all worked like a dream... There\'s a very good chance of rectifying the irregular heart beat by a brief and minor procedure, called cardioversion where an electrical shock is delivered to the heart to convert the abnormal heart rhythm back to a normal rhythm. I was admitted into Fortis hospital straightaway for a few hours on Monday 5 July and had that done. I never felt a thing! In fact, when the anesthesiologist said \'Good Morning Ros, wakie wakie!\' I couldn\'t believe it was already over and thought he was joking.... The procedure was successful first time and my regular sinus rhythm has returned - which feels really good. My energy levels are getting better, my appetite is good, my scars have healed neatly and I feel almost ready to go home.... except that by now I am loving it so much over here that I might stay on even a little longer... I feel my whole experience over here with Fortis Hospital, the nurses, the whole system and above all my surgeon, Dr Jawali, who did a perfect job(and you can\'t even see a scar!) provided me with exceptionally good care during my stay at the hospital and even afterwards, keeping me under observation and fine-tuning my medication throughout! When I return I will take sufficient supplies of all medications for about six months with me - I hear from friends that the NHS in the UK is not very interested in looking after you if you\'ve had surgery abroad - so I will be independent of all that. I plan to return to Bangalore in the next 6 months for another check-up and to spend more time with my great friends from the Shivabalayogi Ashram - having them around, meditating and going to the weekly programs has been absolutely essential in my recovery... I think the good treatment I received may also be indicative of India as such and I find that we\'re having to update our ideas of India as a Third World country... I was watching one of Ted\'s talks the other day: http://www.ted.com/talks/hans_rosling_asia_s_rise_how_and_when.html ...and I feel I was observing the microcosm of the global situation of India within Fortis Hospital and comparing it with my personal experience of mainly the UK and to some extent Germany and I came to the following conclusion: I am personally amazed and inspired by the efficiency & teamwork and good communication, the passionate commitment and focus of the doctors I had personal contact with, the sensitive & caring approach of individual staff, the relaxed (& smiley) and very respectful interaction between all levels of staff and a sense that each individual felt strongly about \'serving humanity\' within whatever role they are playing without being merely motivated by money as in the West - which is ALL bound to produce the absolute best results on every level! These are my observations without knowing the statistics... We can all learn from this I feel as, to my knowledge, all of this is largely absent in the UK where the priority seems to be to concentrate on personl careers & administration and complaints about the limitations of \'the system\' which accounts for the general sense of appathy, stagnation and decline there. Another essential point seems to me that in India there is this \'ease of dealing with chaos\'.... just look at the traffic!... and yet no more accidents than other countries... To any \'Westerner\' the first impression is that there is total chaos everywhere in India - but everything runs astonishingly efficiently & smoothly, which is crucial in a big hospital, for instance. \'Chaos\' to us looks threatening and disabling and we therefore over-regulate everything, killing any possible motivation for large scale improvements in the process - and the idea that \'rules are there to be broken - for the greatest benefit of all\' and \'keeping the bigger picture in mind\' sadly does not seem to exist... So, yes, I can say nothing but the best about my surgery done by Dr Vivek Jawali, Director & Chief Cardiovascular & Thoracic Surgeon, and my general & follow-up treatment during my time at Fortis Hospital, Bangalore, India, AND I CAN ONLY RECOMMEND IT!

Well, feeling quite nauseous and weak due to being on antibiotics for a bladder infection (apparently quite oommon after surgery) - and feeling a bit sorry for myself, too... This will hopefully clear it within 7 days after which I should get my strength back...

Just to let you know I\'m fine and everything went well. I will post a more detailed message tomorrow. I was discharged from Fortis Hospital on 2 June and haven\'t had internet access since then - sorry guys! I am now staying at the Woodrose Club some 2km from the hospital which is ideal in every way. You get a special deal coming from Fortis Hospital, it\'s clean, air-conditioned, excellent service with a little shop on the premises for all your essentials and a peaceful, relaxed atmosphere (just what the doctor ordered!) - breakfast on the balcony overlooking green lawns and a swimming pool! Mr Souhas, the Relations Officer at Fortis, organises a chauffeur driven car to and from the hospital if required for physio or more tests etc. AND they have wifi here and I have now rented a laptop - Tip: best to bring your own small laptop to India and not rely on anything else! Thank you, each one of you, for your concern and support - it means a lot at a time like this! More detailed info from me tomorrow! x Ros x

Hello, I am Jagadish writing on behalf of Sivakami. I am very happy to let you all know that Dr. Jawali told us day before yesterday afternoon that Sivakami\'s Mitral Valve surgery was successful. I am a devotee of Shri Shri Shri Shivabalayogi Maharaj and thus a friend of Sivakami, since she visited us at Bangalore in 1988. A few tests and procedures were carried out on Tuesday although it was termed a REST DAY. Sivakami was taken to the operation theatre at about 8:00 AM on wednesday and we expected the surgery to be completed by about 11:00 AM. However, it was only by about 3:00 PM that Dr.Jawali came out of the OT and told us that the operation was successful. I learnt from Dr. Deepshikha that it turned out to be a complicated Mitral Valve Surgery. Sivakami recovered normal consciousness by about 7:00 PM on that day and by the time I could speak to her in the ICU at 10:15 PM, she was taken off all life support machines including the ventilator. She even tried walking yesterday. She was moved from the ICU back to her \'Royal Suite\' yesterday. She is on liquid diet since day of the operation. The duty doctor in the ICU told me that it was indeed a Minimally Invasive Surgery. Everything turned out to be exactly as Sivakami wanted!

this is Kumar... every thing went well with ros/sivakami and she is back from intensive care unit!!! .... the next message will be posted by myself or by Mr.Jagadish as soon as possible...

I arrived in Bangalore on Thursday after a smooth and comfortable flight with Jet Airways (even the food was good!) Due to the cyclone in Andhra (was that actually mentioned much in the international news?) the temperature here is a \'cool\' 28 degree C which is very pleasant... I had forgotten what the traffic is like in India - sitting in the car felt like watching a James Bond movie - until you realise you\'re actually \'in it\'! It\'s great to be back actually, with all these amazing people - can\'t believe I\'m here - I feel totally taken care of in every way! Jay SBY! I had arranged to meet my surgeon on Saturday (yesterday) and was very impressed with Dr Jawali himself, who is very focused, direct and absolutely unassuming! Will be admitted on Monday to have the angiogram and have the actual operation on Wednesday. The admin side of things was a little chaotic on my arrival at the hospital - mainly, I think, because it was a Saturday and Dr Deepshikha Raj was not there in person... The accommodation looks very comfortable - totally air-conditioned, of course, with a large window with a lovely view, a fridge and a computer... I was given a strong diuretic to take over the next 2 days to get rid of all the fluid prior to the operation - and am only allowed to drink just about one litre of liquid (counting ALL liquids like water, tea and juice) - so I\'m feeling pretty thirsty right now - but chewing gum seems to do the trick for now! Unless the angiogram reveals anything unexpected, it will be a straightforward Mitral Valve repair job (incision under the right breast) and possibly discharge from hospital the following Wednesday. Then at least one week\'s physiotherapy (possibly longer) at the Fortis Hospital while staying with friends in Bangalore... That\'s the plan, anyway - now let\'s see what happens....

AT LAST! My flight is booked for this Wednesday evening, 19 May, and I\'m all ready to go - but there\'s still a small chance that the \'Volcanic Ash Cloud\' over Britain may cause cancellations and airport closures in London that day - depending on which way the wind blows (just a little reminder that we\'re not in control of very much at all!) Since my last entry I\'ve spoken to Dr. Deepshikha Raj (the International Patient Care Co-ordinator at Fortis Hospital, Bangalore) quite a few times on the phone as well as emailing her and she answered all my initial and more general questions. Some 10 days ago, I spoke to Dr Vivek Jawali on the phone which gave me the opportunity to ask all my more technical operation-related questions and I am very happy with everything so far. I first saw & heard Dr Jawali in Robin Steele\'s video \'Mitral Valve Repair In India?\' on the Heart Valve Journal Page - THANK YOU ADAM FOR YOUR BRILLIANT WEBSITE! - you can also find it on: http://www.youtube.com/watch?v=6GBC85o6Ds4, to save you searching for it... Thank God, the severe shortness of breath, pain and fluid retention I had initially (when only vibhuti helped) hardly trouble me at present ever since the diuretics and my excellent herbalist\'s tinctures seem to have kicked in, and I have sufficient energy to get my trip organised... Isn\'t it wonderful how an event like this focuses our mind on what\'s REALLY important?! I seem to have more time (and a real longing) for meditation, peace and reflection and, strange as it may sound, I feel actually blessed to be having this experience: never before in my life have I felt so grateful for what I (already!) have. I am amazed and deeply touched by the heart-felt support from all my friends and Family of Shivabalayogi Devotees in the UK and in India! And also to hear from other people I don\'t even know personally - amazing to realise we\'re all connected by ONE Heart! (Incidentally, it turns out that the new Fortis Hospital branch where Dr Jawali is, is on the same road as Swamiji\'s ashram - and Bangalore is a big city...!) I am so looking forward to spending the first few days prior to the operation in the company of my spiritual family relaxing and meditating and singing bhajans \'to my heart\'s content\' (what could be more healing!) that I find to my surprise I hardly seem to think/worry about the operation itself... If everything goes to plan, I should have the cardiac catheter and TEE Tuesday or Wednesday next week and will let you know when the date for the operation is set. Best of luck to All of Us!

Hi Everyone, I spent the past 2 weeks basically doing a lot of research into what options I have available... After not getting anywhere with the NHS who just put me on a 18 weeks waiting list and realising that I would have virtually no choice/control over who the cardiac surgeon would be or whether I would have Minimally Invasive Surgery or the conventional 12 inch scar down my chest (No thanks!) OR over whether I would have the recommended valve REPAIR or REPLACEMENT (with valve replacement you\'re then on rat poison (Wharfarin) for the rest of your life...) it became very clear that I had to find something else. Well, private treatment in the UK is around £50-60,000... So, after a lot of internet research I have decided to go for Dr Vivek Jawali at Fortis Hospital in Bangalore, INDIA! He has pioneered minimally invasive MV ops in India and comes highly recommended at a fraction of the cost of private treatment over here. I am now what they call a \'Medical Tourist\' I believe... Fortis Hospital is one of the 10 top internationally recommended hospitals and about 50% of their patients are Americans... Ever since I made that decision (and I\'m in extensive email correspondence with them) I feel very okay about it all... almost looking forward to it... As many of you know, I was at Sri Shivabalayogi\'s Ashram in Bangalore over 22 years ago... so it definitely feels right and a bit like \'home\'... Hoping to fly out as soon as possible and get the operation done - haven\'t finalised the actual dates yet - but any time after 11 May... will keep you posted:)