Carmel's Guestbook

Carmel Power  Hi Don. Nearly six weeks out and I am going well. Yesterday, over the day I walked 9kms. Slept well last night! I am still experiencing ocular migraines which I don’t get if I am quiet during the day but after speaking to my surgeon, I am better to keep exercising. The way you came through the surgery, I say you will be amazing at 6 weeks! All the best! C

Carmel Power  Hi Darlene. Thanks for the kind wishes. As I was very fit, I thought I would sail through the surgery but I ended up in ICU for four days due to low blood pressure. I also had a couple bouts of afib, a micro bleed due to the bypass and now have ocular migraines! However, my surgeon was able to perform an 100% repair (at this stage) using a minimally invasive technique. Two and a half weeks out I am doing pretty well. The migraines are manageable if I don’t overdo the walking and I am getting back my right lung abet with a lot of coughing. I am surprised that I am not that tired although I can easily sleep in the afternoon. Have been out to lunch a few times and have caught up with a few friends. Did you have issues early on with getting lung function back? C

Darlene Smith  Carmel, glad to hear about the repair!! That is great news. I actually developed post pericardiotomy syndrome and kept getting fluid around my lungs and heart. After 2 ER visits to my local hospital, I went back to Mount Sinai where I had my surgery, and they put a chest tube in and drained a liter of fluid in 15 minutes! Then I was on prednisone for a while and then off that and onto colchicine, and finally the fluid stopped coming back. The PPS was harder than the surgery itself!! Way way worse!! Once that was resolved, I was able to get traction with the spirometer and able to breath deep again. I didn't have a lot of coughing though. Sorry to hear about the migranes. That sounds dreadful. I hope they can get those under control. Do you have much pain? I had little to none, which still amazes me.

Carmel Power  Hi Darlene. Week three and touch wood, I think I may have turned a corner! I have very little pain and my right lung is now OK according to my GP. Haven’t had a migraine in a couple of days so hoping they might be on the decline. Luckily, I don’t have any residual headache from them, only fatigue. Still not walking that fast. Prior to surgery, I was a very fast walker. However, I feel for the first time that I will get back to my old self. My surgeon told me of one of his mitral valve patient who at three months out sent a photo from the top of K2. That’s inspiring! Hope you are fit and well. C

Don L  Hi Carmel, glad you are feeling better and progressing. I am just over 1 week away. Please continue to post and share.

Carmel Power  Hi Wanita. Thank you! I came home yesterday after being in hospital for nine days. Aubrey was amazing and able to repair my mitral valve. However, I had issues with low blood pressure and stayed in ICU for four days. Also around day 6, started having lots of migraines. An MRI later and a visit from Professor Gerrarty, head of Epworth neurology, revealed I had a “micro bleed” in my brain. No side effects, no memory loss and apparently very rare. He has only seen it twice before and in younger patients, He doesn’t know the long term consequences but has followed one patient for several years whose scans are unchanged. Other issues include trying to get my right lung completely reinflated and bouts of afib. But all under control and otherwise, I am doing well. Yesterday, I walked two flights of stairs and am just about to head out for a walk. How are you going? It’s a while since your surgery and I know you are back at work. All the best. C

Wanita Sherchan  Great to hear that the repair went well! Sorry you had these issues post surgery. Hope these settle down and you have no long term issues. I get migraines too so I know these can be terrible. However, (touchwood) I haven't had a migraine since the surgery. I am hoping this is going to be a little reward for me for going through
the surgery :-D

My heart is doing great so far (touchwood) I haven't had any complications related to the heart. However, I have had quite a few infections. I seem to easily catch respiratory bugs and even had uti recently. So I have had to have many doses of antibiotics. Having said that, I just came back from a 2 week holiday in Thailand :-) . Had an awesome time there and luckily had no health issues. The down side is again I caught something there and am now sick with cold and flu symptoms and am on another course of antibiotics. I sometimes wonder if my immune system is still recovering from the surgery :-)

Carmel Power  Hi Wanita. Bad luck about the respiratory infections - I hope you “grow” out of this issue in time. Great to hear your heart is performing well! Makes the operation worth all the pain. I had a hiccup today with afib which landed me in Emergency for the day. My cardiologist, Prof Ron Dick has changed my medication and I am seeing him this week. All good now so hope it is only another minor issue. I was so confident I would sail through this surgery but I have learnt that this is often not the case. Focusing on the long term outcome for now. All the best. Hope you aren’t too tired working full time and running after children. C

Carmel Power  Hi Sue. Thanks for the feedback! It is much appreciated. After having an angiogram which was all clear, I am having a minimally invasive mitral valve repair (95% confident is the Cardiothoracic surgeon.)The cardiologist who performed the angiogram said I have a severe leak and basically confirmed that it should be operated on sooner than later. I will have the operation on 16 Feb. Hope I am as good as you afterwards! My surgeon is Aubrey Almeida ( Melbourne, Australia) whom I carefully researched. All the best with your recovery Sue!

Wanita Sherchan  Yes, I had some symptoms -sob on exertion and when stressed. Most of the time I was okay and able to do everything - working full time, looking after 2 kids and household chores etc. I used to wonder whether I actually needed surgery right now. The period before surgery was full of doubt and uncertainty but I feel at peace now.

Carmel Power  Hi Wanita. You put into words how I am feeling! I have been given two different scenarios, one is to wait and see, the other to have either a repair or replacement. I don’t have many symptoms except for sob up a steep hill. But I do get tired. I’m 62years old.

Wanita Sherchan  I hear you Carmel. When to have surgery is a very complicated issue. I felt that having the surgery sooner rather than later was good for my peace of mind. The knowledge that I need surgery in the near future was constantly in my mind and I felt that I couldn't plan anything. As many people have said in this site before the waiting period before surgery is the worst. I had a couple of months between when I first learnt that I would need surgery and the actual surgery. I didn't enjoy this period at all. If you have been given two different advice by two people, then perhaps you should get a third opinion to help you make up your mind. Which hospital has been looking after you?

Carmel Power  Hi Wanita. How are you going? I hope you are managing the Warfarin and feeling better every day.
I am getting another opinion on my situation. My issue is am I going to feel worse or better long term after this operation. My heart is enlarged and the Cardiothoracic surgeon said it would be “sluggish” after the operation. Both doctors (who are Professors) have said my situation is not urgent as my heart function is normal. Can I ask if your heart was enlarged and did you have normal heart function? Did you see a cardiologist and a surgeon?
I’ve been to the Austin and St V’s for opinions.

Wanita Sherchan  Hi Carmel, I am doing well. Feeling better every day. Managing Warfarin was a bit tricky at first but my INR is in range most of the time, so now we are trying to space out the tests. I am doing my daily walks which leaves me feeling quite tired and need rest/sleep for a couple of hours. Overall, I think I am doing better than I thought I would be prior to surgery. My heart situation was similar to yours. My heart is enlarged as well. The left ventricle is mildly dilated and the left atrium is severely dilated. I haven't had an echo post surgery. The surgeon reassured me that it will take about a year for the heart to remodel and to go back to normal size. Have you had a stress echo done? I had severely reduced exercise performance for age. I could only exercise for 8 minutes and had to stop due to sob. There was no chest pain. Apart from this, rest of my heart was fine. I had normal ejection fraction at rest. The trigger for surgery was the stress echo and they suspected that I might have fluid/blood particles build up in my lungs. I got very sick earlier this year and was hospitalised twice when I had viral infections. They thought I had asthma (it was a new diagnosis) but my lung function test came back all good, so they decided that it must be blood particles build up in my lungs due to the mitral valve issue. My x-rays were all good and CT scan was good as well. One of the cardiologists thought that we could wait and see and there was no urgency but the majority of cardiologists and surgeons decided on surgery in a departmental conference. I decided to go with the majority decision. I had been a regular outpatient at Monash Medical Centre for years so they called me when they decided to put my case up for surgery discussion in the departmental conference. I was assigned a surgeon after the conference and then I met the surgeon for discussion. The surgeon was part of the conference team so he was on the same page. I saw another cardiologist later who thought my echo and stress echo didn't indicate any urgency but he didn't want to go against the advice from the cardiology conference as the conference team usually consists of 5-6 cardiologists and 5-6 surgeons.

Carmel Power  Hi Wanita. I am very grateful for your feedback as it fills in a lot of gaps I have in my understanding of the process. I hope you continue to get better and back to full health. Please keep in touch and let me know how are you are going.

Carmel Power  On the stress echo...no haven’t had done but I was doing “Spin Classes” until the doctors told me that walking was enough for me. I will need to have some iron tests and an angiogram done at some stage but again there seems to be no hurry.

Wanita Sherchan  Thanks Carmel. Heart surgery is a difficult journey. I never imagined that I would have heart surgery in my 30s. Even though I had known about my problem for a couple of years I imagined I would need to deal with it in my 60s. So it was quite a shock for me and my family. This year was a roller coaster. I am hoping things will settle down now but you never know what the future holds. Re the iron tests, I had them done prior to the surgery and they found that I had iron deficiency anaemia. I took an iron iv infusion and had to wait 4 weeks afterwards to get clearance for surgery. I didn't need blood transfusion during the surgery - benefit of the iv infusion. Please keep in touch. I would like to know how your journey progresses. This site has been a huge help specially before the surgery. All the posts that described successful surgeries gave me hope and strength during the tough times. The posts that described the challenges made me mentally ready for possible issues I could face. In the end each of us has to experience our own unique journey. I wish you all the best in your heart journey!

Carmel Power  Thank you. I feel l have made some friends which is the real positive in a difficult situation. I’ve known about my mitral valve prolapse for 40 years but have been pretty slack at monitoring it. Now back in the system. Let me know how you are in a few weeks. All the best C

Carmel Power  Hi Wanita. I hope you are going along well! Just thought I would give you an update. I have come to Sydney to see a Cardiothoracic surgeon who presented at the Mitral Valve Symposium in 2015 on early intervention for Mitral Valve Disease. (It looks like they have one every couple of years in Sydney as there was one this year). He recommended a surgeon in Melbourne -Dr Aubrey Almeida! I think this is who did your surgery?

Wanita Sherchan  Hi Carmel, I am doing well. I started cardiac rehab this week so looking forward to building up my strength :-). Yes, Dr Aubrey Almeida is my surgeon. I would highly recommend him. He is the best surgeon for MVR in Australia! I am very happy that I got him as my surgeon :-). His consulting room is in Epworth Richmond if you would like to meet him.

Carmel Power  Hi Wanita. From the information I’ve been given, you had the best surgeon which must be very reassuring. The Cardiothoracic surgeon in Sydney has written a referral to Aubrey for me so I am going to see him in the New Year. It doesn’t seem long ago that you had your operation so starting cardiac rehab is impressive!

Carmel Power  PS. Did you have minimally invasive surgery or a sternotomy? From my understanding, the former is an easier recovery.

Wanita Sherchan  Hi Carmel, I had full sternotomy. Dr Almeida performs robotic surgery as well so that could be an option for you. I have heard that it is much easier recovery and shorter as well since the sternum doesn't need to be opened. I couldn't go for that option as my insurance wouldn't cover it.

Carmel Power  Thanks for the information regarding the insurance Wanita. The guy in Sydney mentioned minimally invasive but I have see Aubrey first. Would you mind telling me if you have any issues post surgery. Some of what I read is pretty scary! Does Aubrey think you will get back to how you felt before the operation or better?

Wanita Sherchan  Luckily I have had minimal issues so far. I had a short 30 mins a fib episode in day 3 and then went back to sinus rhythm. I was prescribed Sotalol for it and they recommended I continue it post discharge. However, this week I had a review with the cardiothoracic team and my ecg showed a 1st degree heart block. They think it was caused by Sotalol (they consulted with the cardiologist as well) so I am off it now. Apart from this I felt pretty bad emotionally the first 2-3 weeks. But slowly things are starting to look good. The doctors said that I should feel much better after the surgery specially after the heart has remodeled. They also think that this valve will last me my lifetime and I would have normal lifespan. I am counting on this :-)

Carmel Power  Glad to hear that you will have a normal life expectancy as you are very young! And your children will need you fit and well. Thanks for being so honest about your journey. The Cardiothoracic surgeon in Sydney said I have Barlow’s Disease. I have a referral from him and am booked into see Aubrey this Tuesday. I hope to get a cardiologist through him. Will let you know how I get on!

Carmel Power  Hi Wanita. Hope you are still progressing well with your recovery. I saw Aubrey yesterday and he felt he could repair my valve, however, I still need a plan B which is either a mechanical or tissue valve. Still figuring that one out! Also,due to my age, I will have an angiogram and then be booked for surgery in February. The waiting period begins!
All the best for the festive season! C

Wanita Sherchan  That's great news Carmel! I hope you continue to get positive news in the new year. Hope this festive season provides you much needed rest and rejuvenation and get you ready for the challenge in 2018!

Carmel Power  Hi Wanita. How are you going? Hope you are trouble free and have more energy. I had my angiogram which showed clear coronary arteries and I am to have minimally invasive surgery on 16 Feb. Feel very fortunate that I live in this country and are able to have this done. All the best. C

Wanita Sherchan  Hi Carmel, so good to hear that your arteries are clear and you are good to go for surgery. Great news on minimally invasive option! Recovery will be so much easier for you. You will feel much better on the other side. I hope all goes well for you on Feb 16. As for me, I am feeling good. Had a bit of issue with pleurisy around x-mas new year time but all good now and have started work as well :-)

Carmel Power  Hi Wanita. Sorry to hear about the pleurisy but pleased you are back to work. Do you have more energy? I hope so as working and looking after little ones is pretty demanding. Hope you still continue to recover well. Will touch base with you sometime after the 16 Feb. Thanks again for being so generous with your the story of your journey. I really appreciate it. 😊

Carmel Power  Hi Wanita. Hope you are recovering well from your operation. Did you have a tissue or mechanical replacement?