Guestbook of Susan McNally

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Susan McNallygot a new guestbook post

2412 days ago

John Formby posted a note for Susan that says:

Hi Susan I live in Suffolk and my story is quite similar to yours. For a number of years I had been having 6 monthly echo’s to monitor and assess my “leaking ...Read more

Hi Susan I live in Suffolk and my story is quite similar to yours. For a number of years I had been having 6 monthly echo’s to monitor and assess my “leaking aortic valve” .I was initially told that I would need a replacement aortic valve operation in my mid to late sixties ( i was 55 at the time) but for now I would continue to have six monthly scans. I went for an echo in March 2017 and with no real change to my condition was told to that I would receive another appointment in 6 months. How things change!! In September 2017 I had my scan just before our summer holiday and on my return I attended the pre arranged consultation with the cardiologist in early October. I told my wife that there was no need for her to come along with me as they’ll be telling me to come back in 6 months!! Despite there being no change to my health or fitness and following my holiday, I was feeling really refreshed, the cardiologist advised me that the valve had degenerated significantly during the last 6 months and my aortic stenosis was now sever and therefore i would need to have a AVR within 12 months !! By good fortune I have private health care and given this news I made the decision to take ownership of the situation and manage the next phase myself. I’m happy take you through the journey if it’s of interest but the result was that I had a aortic valve replacement operation at Papworth Hospital on 29 January 2018 (just after my 59th birthday) It’s now some 9 weeks post op and I’m really well. Ive been discharged by my surgeon and am waiting to see my cardiologist. I still have to take care when lifting heavy items, but I’m on my cardiac rehabilitation course now and I will be returning to work in the next few weeks. If I can be of any help in any way by sharing any experiences or answering any questions please do not hesitate to post me a note. Take care John

Susan McNally Thank you John. I am glad you have sorted your situation. I don't have private health care and feel ... Read more

Susan McNally Thank you John. I am glad you have sorted your situation. I don't have private health care and feel a little at the mercy of the NHS. I know the moderate measurements are not as scary now but I was told it was a clerical error that I still haven't been heard by the MDT. I just want to know where I am ie if its watch and wait with 6 monthly echos, then I can plan, sort of. Or if I go on a waiting list now its an 18 week list and once again I can plan. Not knowing is the worst but also is the 2 year clock ticking yet? Im glad you're already feeling well. Im just a scaredy too.

John Formby Hi Susan - I’m sure everything will work out ok but remember you’re not alone and there is plenty ... Read more

John Formby Hi Susan - I’m sure everything will work out ok but remember you’re not alone and there is plenty of advice and support out there for you. If I can help in anyway please feel free to contact me.

Ps - I’m a wimp as well 😁

John

Susan McNallygot a new guestbook post

2501 days ago

Susan McNally reacted to this

Jennifer McInerney posted a note for Susan that says:

Thinking of you. Hope all is well. I am originally from England transplanted to Ontario, Canada but lots of family still in England. We are at a similar stage ...Read more

Thinking of you. Hope all is well. I am originally from England transplanted to Ontario, Canada but lots of family still in England. We are at a similar stage with our "heart" stories so fell free to contact me if you want to vent or share info. Take care. Thinking of you.

Susan McNally Thank you Jennifer.where in England do your family come from? I have family in Ottawa, Toronto? Stra ... Read more

Susan McNally Thank you Jennifer.where in England do your family come from? I have family in Ottawa, Toronto? Stratford and Halifax. One of my cousins danced for Le Grand Ballet Canadien and lives in Bew York. Also I have bought a house in Stowe Vermont so very close to the Canadian border.

Jennifer McInerney I live in Niagara wine country, close to the u.s. border. Our house is on the shore of Lake Ontario ... Read more

Jennifer McInerney I live in Niagara wine country, close to the u.s. border. Our house is on the shore of Lake Ontario. My family is in Abbotts Langley (close to Watford) and Cambridge. I come over to see them every few years. I love England and really enjoy my visits.

Susan McNally Niagara on the Lake is beautiful. We have old friends of my in laws who live in St Katherines.

Jennifer McInerney We own a rental property in St. Catherines. I love Niagara on the Lake. Its very close by and we re ... Read more

Jennifer McInerney We own a rental property in St. Catherines. I love Niagara on the Lake. Its very close by and we really enjoy going there. I had my first dizzy spell today. It has left me wondering if my symptoms are starting. I hav decided to wait before calling my Cardiologist to see if it happens again. Hoping it was just the result of rushing around too much.

Susan McNally I had a dizzy spell over a year ago and then another one a year later again. They don't think its co ... Read more

Susan McNally I had a dizzy spell over a year ago and then another one a year later again. They don't think its connected as so far apart. So if you decide not to do anything, at least do something if it happens again in close proximity to this one.

Jennifer McInerney That was my thought too. So annoying being in limbo "is it a symptom or is it not". The "waiting" onc ... Read more

Jennifer McInerney That was my thought too. So annoying being in limbo "is it a symptom or is it not". The "waiting" once you know your AS is severe can be stressful. Most of the time I try not to think about it and just live my life but then a dizzy spell sneaks up on you.

Susan McNally Over the last few days Ive had a "pinchy" pain if you understand me. Its in the area of my heart and ... Read more

Susan McNally Over the last few days Ive had a "pinchy" pain if you understand me. Its in the area of my heart and every now and then Ive had a feeling of something pinching in that area, just a sharp little pinch that I don't even think is deep enough. But of course I can't tell. They found that I might have a bicuspid valve ie there are 3 areas but one of them doesn't open or close. The other two leaflets do open and close but in a shuddery way so of course now Im thinking the pinchy feeling is that.

Jennifer McInerney If you are concerned call your cardiologist. Better you find out its nothing than ignore a potential ... Read more

Jennifer McInerney If you are concerned call your cardiologist. Better you find out its nothing than ignore a potential symptom. Its enough to make a person crazy, all this watching, waiting and wondering. However in fairness, I think once they tell me its time for surgery I will either run from the exam room screaming or cry hysterically and im a very ugly crier!

Susan McNallygot a new guestbook post

2501 days ago

BHARAT VORA posted a note for Susan that says:

Hi Susan I read your latest update with interest & concern Year after my triple bypass surgery in 2013 I was diagnosed with mild Aortic @ Mitral Stenosis ...Read more

Hi Susan I read your latest update with interest & concern Year after my triple bypass surgery in 2013 I was diagnosed with mild Aortic @ Mitral Stenosis and one of my bypass graft was occluded ! My original team @ Kings advised me to re-do open heart surgery. ! was not happy with their advice, hence I obtained independent second opinion and also my case was discussed by MDT (consists of app 15 specialists) They confirmed that there no need to do any surgery but monitor my conditions six-monthly with Echo and consultation. Over next 3 years my Aortic Stenosis progressed from mild to medium to severe. So I was consulted by Surgeon/ Cardiologist etc and was advised to do TAVR (less invasive procedure) TAVR procedure was successfully performed in December 2016. Since then, I feel ok and still go for 6 monthly review (Echo+consultation) My mitral stenosis is mild and so far not progressed any more From my personal experience and advise of team of Professionals, I suggest: - attend valve specialist appointment - prepare and ask relevant questions - seek second opinion - and then make informed decision Hope my suggestions are helpful to you Kind regards

Susan McNally Hi. Have you just read my update after the appt. I speak of the changes in measurement and the MDT? ... Read more

Susan McNally Hi. Have you just read my update after the appt. I speak of the changes in measurement and the MDT?

Susan McNallygot a new guestbook post

2510 days ago

BHARAT VORA posted a note for Susan that says:

Hi Susan Congratulations on the birth of your 'First Grandchild" I understand you had an appointment with The Cardiologist and he has put in touch with The ...Read more

Hi Susan Congratulations on the birth of your 'First Grandchild" I understand you had an appointment with The Cardiologist and he has put in touch with The Valve Specialist @ Kings College, London I will be very interested to know the name of the cardiologist & also valve specialist Since 2010, I have had various heart conditions (Aneurysm, triple bypass surgery, valve replacement etc) and have dealt with Cardiologist, Surgeon etc @ Kings College I had to seek second opinion after my initial triple bypass surgery as I was not at all happy with my team @ Kings. Prior to I update you with my experiences, I will be very interested to know names of Cardiologist and Valve Specialist you are dealing with @ Kings College, Denmark Hill, London Kind regards

Susan McNally Hi. I saw Dr Petzer initially and he has referred me to a valve specialist at Kings. I think his na ... Read more

Susan McNally Hi. I saw Dr Petzer initially and he has referred me to a valve specialist at Kings. I think his name is Jobathan Byren at Kings. I have an appt on 2 January. I shall be interested to hear your experiences.

Susan McNallygot a new guestbook post

2515 days ago

Marie Myers posted a note for Susan that says:

Yes, I had retinal migraines prior to heart surgery as well. As a teenager, I had awful full blown migraines with nausea and headache. They changed as I aged ...Read more

Yes, I had retinal migraines prior to heart surgery as well. As a teenager, I had awful full blown migraines with nausea and headache. They changed as I aged to just retinal migraines. I found the stress of the whole aneurysm/open heart news increased the number of auras for me. I had dozens in the first few weeks following heart surgery as well. I am guessing the stress of the whole situation triggered them.

Susan McNallygot a new guestbook post

2527 days ago

Jennifer McInerney posted a note for Susan that says:

Hello there, your story sounds very similar to mine. I was actually born in England but moved to Canada as a child. Diagnosed with bicuspid aortic valve many ...Read more

Hello there, your story sounds very similar to mine. I was actually born in England but moved to Canada as a child. Diagnosed with bicuspid aortic valve many years ago. Maintained a mild to moderate status my whole life, then suddenly moved to moderate/severe. I was really upset when I was told surgery was imminent. I am now still watchful waiting as I also have no symptoms. I see the Cardiologist every two months. I was having low blood pressure but meds were changed and I feel fine again. Being in "limbo" knowing you have this is not fun so I can definitely relate. Telling my kids was tough but they handled it much better than I thought they would. Keep in touch and we can share our "heart" adventure.

Margot Swann Hi Jennifer. My bicuspid aortic valve was replaced with open heart on October 2. I'm almost 72 year ... Read more

Margot Swann Hi Jennifer. My bicuspid aortic valve was replaced with open heart on October 2. I'm almost 72 years old in very good health. Initially I was guided to try TAVR but then through lots of research (and the advice of other physicians) realized the bicuspid aspect of my situation, together with my otherwise healthy body, made TAVR a more risky choice.
I'm now over two months out and in great shape. I literally almost bounced through my recovery.
There was a lot of prayer and care from family and friends. Another bit of difference I believe was my anesthesiologist agreeing to allow me to listen to sacred music DURING the surgery and throughout my time in ICU. I believe saturating my subconscious during the time I was being "sliced and diced" with distracting, contemplative music, led me to recover more rapidly than most.
Please email me at margotswann@gmail.com if you want to hear more.

Susan McNallygot a new guestbook post

2533 days ago

Wendy Evans posted a note for Susan that says:

Susan, hello from the other side of the pond! I understand well your concerns. I am 60 and just had my AVR. They found a heart murmur 5 years ago and did a ...Read more

Susan, hello from the other side of the pond! I understand well your concerns. I am 60 and just had my AVR. They found a heart murmur 5 years ago and did a work up and found nothing, then this October I started having chest pains when I walked up steps. Went in for a check up to my cardiologist and she did not like what she heard...long story short. SEVERE aortic stenosis and surgery was October 27. Like you I eat healthy, been off and on vegetarian most (40 years) of my life, I bike and kayak and hike. This hit me out of the blue. They told me that I have no heart disease - arteries are all clear and there was nothing I could do to prevent this. Doctor said he wished his patients were this healthy. Go figure, how did this happen? Well, I am 5 weeks post op and I feel great, sore but good. I moved home yesterday and have been puttering around the house and getting settled back in. I hope and pray that all goes well for you. Oh, I had minimally invasive surgery - 3-4 inch incision. God bless!

Lisa McLaughlin Susan & Wendy - I asked my cardiologist and surgeon what could have caused my severe aortic stenosis ... Read more

Lisa McLaughlin Susan & Wendy - I asked my cardiologist and surgeon what could have caused my severe aortic stenosis and both said I didn't do or not do anything to cause it. I found a blog post from 2011 on this site that talks about the minimally invasive approaches and thought it was helpful: https://www.heart-valve-surgery.com/heart-surgery-blog/2011/11/28/minimally-invasive-aortic-valve-marc-gillinov/

“What Are The Different Kinds Of Minimally Invasive Surgery For Aortic Valve Replacement?” Asks Jim

https://www.heart-valve-surgery.com/heart-surgery-blog/2011/11/28/minimally-invasive-aortic-valve-marc-gillinov/

Recently, Jim sent me a great question that reads, "Adam - I’m 65 and diagnosed with moderate aortic valve stenosis. It seems there are a couple of different

Wendy Evans Lisa, my cardiologist said the same thing. There was nothing I did to cause it. In fact, my arteries ... Read more

Wendy Evans Lisa, my cardiologist said the same thing. There was nothing I did to cause it. In fact, my arteries are clean as a whistle and I have an almost perfect sinus rhythm! I'm part of the 5% of his patients that don't have anything else wrong with them except the AVR.

Susan McNally Thank you. That's a huge task to move home amongst all the surgery too. To give you an idea of my i ... Read more

Susan McNally Thank you. That's a huge task to move home amongst all the surgery too. To give you an idea of my issues, I can't even bear to have my blood pressure taken! I feel they're looking into my soul, stupidveh? To open up my chest is even more severe invasion. I've always kept healthy but a car accident which left me with some injuries has impeded the exercise I should be doing.

Susan McNallygot a new guestbook post

2561 days ago

Marie Myers posted a note for Susan that says:

Sorry to hear about your diagnosis. It is a shock to hear, especially living a healthy lifestyle.. Please don't feel ashamed of your diagnosis! There was nothing ...Read more

Sorry to hear about your diagnosis. It is a shock to hear, especially living a healthy lifestyle.. Please don't feel ashamed of your diagnosis! There was nothing you could have done differently to change this.. I had the same unwelcome shock last fall when I was told I had an aneurysm on my ascending aorta due to my bicuspid valve. I had surgery 7 months ago and am fine now. Just take your journey , whatever it may entail, one day at a time. You will get through this!! All the best to you.. Marie

Civita Fahey Hi Susan as Marie said its nothing you can control ad nothing to be ashamed of . do you have a bicu ... Read more

Civita Fahey Hi Susan as Marie said its nothing you can control ad nothing to be ashamed of . do you have a bicuspid valve? those of us that do will have the valve calcify sooner than most people. its just the amount of work its been doing for so long.. I am 56 and had my valve replacement this past April after finding out about my bicuspid valve 5 years ago.. Like you I was told, you can probably go for years without doing anything and eventually it will need to be replaced. Well eventually meant 5 years.. I was moderate to severe stenosis and was starting to have mild shortness of breath.. its a shock and its scary.. but as you will see by reading so many of the successful stories on this page, its doable and we can survive it.. let me know if i can answer any questions for you..

Susan McNally I have no idea about my valve. I just developed a heart murmur when I was about and had suspected rh ... Read more

Susan McNally I have no idea about my valve. I just developed a heart murmur when I was about and had suspected rheumatic fever but that was never formalised. My mother has a heart murmur though and she's 87 with no problems. I have been able to source all my medical records since I was born and once I have them I intend to look it all up.

Im also worried that no one seems to be panicking about this but me. Even the British Heart foundation said i don't need to worry about an appointment for a couple of weeks and my doctor said over the next few weeks.

Susan McNally Im actually feeling very dark again. I get that every evening into night. Im expecting my first Gra ... Read more

Susan McNally Im actually feeling very dark again. I get that every evening into night. Im expecting my first Grandchild in December and I just don't need this to spoil it for my Daughter.

Civita Fahey Its hard not to get dark.. but, truly its probably not an emergency.. I had moderate to severe stenos ... Read more

Civita Fahey Its hard not to get dark.. but, truly its probably not an emergency.. I had moderate to severe stenosis for over a year before I had my surgery. have you had an echocardiogram. they look at many different things, gradient, valve size etc.. so, don't fret.. I know you are in Britain but if you would like to talk let me know.. It helped me tremendously to talk to people who had had it done before me.. email me at Formia0711@gmail. com. don't be scared, just try to go about your day , it will all be ok.. I know I hated it when people said that to me before surgery, but having been through it, I feel I can say it and know its true..

Rose Madura Susan, please don't worry yourself too much. As Civita and Marie both said, hearing the news and the ... Read more

Rose Madura Susan, please don't worry yourself too much. As Civita and Marie both said, hearing the news and then having to wait are two separate and very real anxieties. When I realized I needed surgery, the cardiologist told me my stenosis was so bad that the opening was less than an M&M piece'of candy. He said if I walk to do it on a rebel surface (like the grocery store) until after the surgery. My waiting period was just under 3 months. An echo will help determine how soon you'll need the surgery. I too was born with a bucuspid aortic valve and also had rheumatic fever. Let us know if you have any questions.

Kathy Blank Susan- I discovered my asymptomatic heart murmur was caused my mild mitral valve prolapse and didn't ... Read more

Kathy Blank Susan- I discovered my asymptomatic heart murmur was caused my mild mitral valve prolapse and didn't think anything about it for 20 years. I was shocked at age 59 to learn the mitral valve regurgitation was severe. If you are like me- it was not emergency surgery but the surgeon said to schedule in within the next 6 mos. it took a month to get past the shock
and fear and decided to research. This site is by far one of the best resources and this community is amazing! Find others w same heart valve issue and ask questions and you can become empowered and proactive! The brace heart brothers and sisters on this site gave me the courage and fortitude as well as a positive attitude for OHS. Now I feel
thankful it was caught early before symptoms!

Meredith Bray Mine wasn't discovered until I was 33, and it was bicuspid. I lived with it with no change in severit ... Read more

Meredith Bray Mine wasn't discovered until I was 33, and it was bicuspid. I lived with it with no change in severity for almost 10 years. And remember, everyone is different! Look at your mother - she's had her murmur for YEARS and no surgery. I think that statistics I read was about 2-3% of the population has a murmur, and only about 2% of those with murmurs need corrective surgery. Whether you need surgery or not, you've come to the right website for support - everyone here "gets it." We know. We remember our diagnosis, the fear, the relief, the anxiety, the researching. We're on your side. ***You are not alone.****

Susan McNally Thank you. I have just come back from my doctors who is the one referring me to a cardiologist. He ... Read more

Susan McNally Thank you. I have just come back from my doctors who is the one referring me to a cardiologist. He has been surprised that 3 years ago I showed hardly any problems and in just that 3 years it has progressed including severe calcification etc. Im not sure how unusual that really is or if there could be another reason for it. He even hinted at the possibility the echo recording was not entirely accurate but at the same time did not raise my hopes. After all there's no getting away from it, I have aortic stenosis.

Wendy Evans Susan, I understand your concerns, especially about your daughter. I had the same concerns. My son an ... Read more

Wendy Evans Susan, I understand your concerns, especially about your daughter. I had the same concerns. My son and his wife were due at the time I had my surgery. She went into labor the day of my surgery and delivered a beautiful baby girl the next day. You have much to look forward to, have faith! God Bless!