Jane Howard - Heart Valve Journal

My Journal

1782 days ago

Question - can anyone help? I was due to have SAVR (minimal access) on 23 November, but at the end of a October I had a GI bleed which was caused by three ...Read more

Question - can anyone help? I was due to have SAVR (minimal access) on 23 November, but at the end of a October I had a GI bleed which was caused by three stomach ulcers, found when they took me in to hospital. It was a very frightening experience but I was even more upset when I was told by my heart surgeon that he could not operate until the ulceration was completely healed - a minimum of eight weeks. The reason he gave me was that they have to give you so much anti coagulation during the valve replacement that any kind of cut in the stomach can bleed profusely and potentially be very dangerous. I am due to have the repeat camera tests to check the ulcers in the next couple of weeks, but my heart symptoms are now very severe and I NEED the new valve ASAP. I am suffering with extreme anxiety and am struggling to function at all. I am in the UK and we have a different relationship with our surgeons here and it is not possible to ask questions the way you guys in the US are able to. I am terrified that they are going to say my stomach isn’t healed or that there is something else wrong and I wondered if anyone on here has had any kind of similar experience? I also wonder if I could have a a TAVR if they can’t operate? I am so debilitated by my AS now that it is hard to do anything and I am becoming more and more frightened by the day. Did anyone else keep thinking about dying? I keep thinking about it all the time and can’t find anyone to talk to about what I am facing - I am well aware that I sound completely self absorbed but I have two daughters and two disabled sisters and no other family.

Susan Lynn Jane - I am so sorry to hear of your experience and I know the heart warriors on this site will be gl ... Read more

Susan Lynn Jane - I am so sorry to hear of your experience and I know the heart warriors on this site will be glad to provide feedback to you. My advice is to do what you can to relax until it's safe to have your surgery. I found that just thinking about surgery made my heart palpitate and made me short of breath - like I was running a marathon - even though my condition wasn't worsening. Anxiety is only going to make your heart work harder and may even slow the healing of your ulcers. I know this is easier said than done!
Anti-coagulants are a pretty big part of heart surgery. I only had a repair and was on anti-coagulants during and for three months after surgery as a precaution. Depending upon the type of valve you're getting, these meds may be part of your ongoing post-operative treatment.
Please do what you can to think about all the good things ahead of you. Your surgery will be performed when your body is ready. It seems like forever when you're waiting. Heart surgery is safe because, in addition to the advances in medicine, we heart patients all undergo a battery of pre-surgical tests to ensure the best probability of success. You and your surgeon don't want any surprises. It may be easier to say that treatment of your ulcers was just one of the action items that needed to be checked off the list before your procedure. Stay positive. You're going to be just fine. Ask all the questions you have - we'll be with you every step of the way!

Alex Sigalov Hi Jane, hang in there, i definitely at the thought something was going to happen to me before i had ... Read more

Alex Sigalov Hi Jane, hang in there, i definitely at the thought something was going to happen to me before i had my surgery, about a month before my surgery my pulse and and blood pressure was jumping to over 200/100 and pulse to over 100bpm almost on daily basis sometimes multiple times a day, i think its 50/50 chance that it was from anxiety and not from underlying problems valve problem, i had my doctors precise zanax for me to help with anxity, i was even allowed to take it on morning of the surgery. See if you can get that to help you deal with your anxiety on daily basis until ur surgery.

Diane Maher Speaking from personal experience, you are one very lucky lady to have had your ulcers discovered bef ... Read more

Diane Maher Speaking from personal experience, you are one very lucky lady to have had your ulcers discovered before your surgery and not after...like me. I think after you read my journal about my experience, you might also agree that this pre-op discovery is definitely a blessing. Your team is on top of this now, your body is healing...keep positive, keep strong. Oh yes, eat lots of iron rich foods. Please let me know if I can answer any questions.

Jane Howard Thank you for your kind words Susan and Alex - my regular Doctor has given me some anti anxiety pills ... Read more

Jane Howard Thank you for your kind words Susan and Alex - my regular Doctor has given me some anti anxiety pills but has said I should only take them if I am super anxious and has only prescribed 10 tablets. I am going to keep checking in here because just reading your kind words has made me feel less alone. Thank you.

Jane Howard Dianne - I have just read your story and it is scary for sure. How are you doing now?

Diane Maher At six weeks after my OHS, at my first visit with my cardiologist, I told him I felt I had turned a c ... Read more

Diane Maher At six weeks after my OHS, at my first visit with my cardiologist, I told him I felt I had turned a corner and 3 months I was hard pressed to believe that I had surgery! Currently, I just started treatment as my ulcer returned. So I did a little research and found that the majority of ulcers return if you have the h pylori bacteria which obviously the hospital did not test me for when they diagnosed the ulcer.

Frank Giovanniello Jane, emotions run wild before surgery and long after surgery. Before it's the long drawn out waiting ... Read more

Frank Giovanniello Jane, emotions run wild before surgery and long after surgery. Before it's the long drawn out waiting. Afterwards, just a certain look or action, or items just sets me off. Jane, you"ll do just fine.

Gina G Jane, I am so sorry about what you’re going through. I too had extreme anxiety and fear of dying pr ... Read more

Gina G Jane, I am so sorry about what you’re going through. I too had extreme anxiety and fear of dying prior to my valve surgery. It feels like no one really understood, and that’s why I think only others who have gone through OHS can truly relate. This is a great resource...Take comfort in knowing that you’re not alone. Ask your physicians as many questions as you feel is necessary...and rely on the support of others when you can. Find whatever things bring you some comfort, and indulge in those moments whenever possible. You WILL get through this! Wishing you all the best.

Deepak Khanka Jane, sorry to hear about your situation. NHS can provide you with counselling session , were you can ... Read more

Deepak Khanka Jane, sorry to hear about your situation. NHS can provide you with counselling session , were you can discuss your fears. I am considering one before my redo. Pls enquire with your surgeon or GP. I have been told these counselling sessions are very helpful

Chris Calhoun try to focus on one issue at a time - and remember above all else - "This too shall pass" this was m ... Read more

Chris Calhoun try to focus on one issue at a time - and remember above all else - "This too shall pass" this was my battle cry !! Get your game face on - and I promise none of it is as bad as the worry - this is the worst part - the actual surgery or in my case several surgeries aren't as bad as we think!!!!! THIS TOO SHALL PASS!!!!!!!!

Marie Myers Jane- So sorry that you are going through all this. Some people really have a more difficult path th ... Read more

Marie Myers Jane- So sorry that you are going through all this. Some people really have a more difficult path than others, that is for sure. It is the wisest choice to wait for the ulcers to heal. If the ulcers are caused by a bacteria called H. Pylori, the docs should be treating you with antibiotics also. If your AV symptoms get too severe while waiting to heal, It is possible to have TAVR instead. But all this would be up to your doctors. It also is possible that some of the symptoms you are having is due to anxiety and stress, not your valve. Do as much relaxed-thinking as you can, maybe including yoga, meditation, and deep slow breathing. Take the anxiety meds when you are really tense, and see it it helps your symptoms. Wishing you all the best!

Jane Howard Once again, thank you all for your kind words of support. I am trying to stay as relaxed as possible ... Read more

Jane Howard Once again, thank you all for your kind words of support. I am trying to stay as relaxed as possible but I am self employed and really worried about not being able to work which means I won’t be able to pay my bills. I am going to get in touch with my Stomach doctor tomorrow to see if they can sort the camera tests ASAP. It has helped me reading all of your stories too - I’m not the only one with complications! Deepak - the counselling you mention is not available at my hospital, but my GP has referred me although
I believe the wait is long. I have been tested and do not have the H Pylori - the damage has been caused by long term use of non steroidal anti inflammatories for my arthritis, at the same time as blood thinners...

Deepak, what is NHS?

Catie B Ana, NHS is the National Health Service in the UK, where Jane lives.

Susan McNally I am with you on this. I too am in England. As part of the work up for surgery, Ive had a ct scan w ... Read more

Susan McNally I am with you on this. I too am in England. As part of the work up for surgery, Ive had a ct scan which has shown up a couple of things that I wasn't prepared for. My biggest fear has been that something will come up that means they can't do surgery. What on earth are we meant to do? Ive waited 2 years to get to the right stage and now Im super worried.

Jane Howard Susan - I understand exactly how you are feeling - it’s just so worrying isn’t it? I had two CT s ... Read more

Jane Howard Susan - I understand exactly how you are feeling - it’s just so worrying isn’t it? I had two CT scans and I have to have an endoscopy and possible colonoscopy soon as they found some ulceration in my stomach. Where about S in England are you? I’m in Liverpool but I have elected to have my valve replaced in Blackpool as it is one of the only places where a surgeon can do minimal access (aka right anterior thoracotomy). If you want to chat I’m on Facebook and Messenger! Maybe we can offer each other some mutual support!

Pamela McKay Jane, thanks for the sweet note. I understand your fear and this community has helped me educate mys ... Read more

Pamela McKay Jane, thanks for the sweet note. I understand your fear and this community has helped me educate myself so that I can better prepare myself for next week. Everyone has been so encouraging. As one person told me they felt like it was a place that they could voice their concerns and not continually talk about it with family and friends. Please know that I’m here for you if you just need to bounce things off of though I’m a newbie myself. In this club we are all equal.. Blessings

Jane Howardposted an update

1850 days ago

Hi everyone, I am posting this today because I am feeling in a state of terrible panic. Firstly I live in the UK so patient choice is not the same as in the ...Read more

Hi everyone, I am posting this today because I am feeling in a state of terrible panic. Firstly I live in the UK so patient choice is not the same as in the USA - I have severe aortic stenosis and persistent A fib, and need surgery ASAP. I am sixty years old and weigh 300lbs and am 5ft 9ins tall. All of the doctors here go on about my weight and it is just making me more and more scared of having the operation. I have found a surgeon who will do it via right anterior thoracotomy, and there is also someone who will do a TAVR. I have very bad arthritis in my legs and am worried about mobilising after the operation and think, for this reason, that a TAVR might be better as I will be up and about quicker but I don't know. I worry about the risk of stroke with a TAVR as my valve is quite severely calcified. Can anyone give me some advice or reassurance? Is anyone out there a big person like me? I feel so selfish being so worried and panicky and try so hard to keep things in control, but now I have another problem that I have got a problem in that I took NSAID tablets for my arthritis which is not advised with my blood thinner, but the pain was so severe that I went ahead and got some. I ended up having a really bad tummy and my stools were all black and purple (although I had eaten a ton of stewed blueberries and taken ferrous sulphate) and now I am freaking out that they won't operate or that I have cancer as well. I'm so very sorry that this post is so long and rambling but I have no one to talk to about it because I only have my daughters and I don't want to go to my friends. Is anyone fat like me? Has anyone had a TAVR? I am making myself ill worrying about it - I have two kids (ages 20 and 22) who live with me and need me and the thought of leaving them is just so upsetting to me. I am so torn.

Sharon Cotter Dear Jane, the first thing you need to do is take some deep breaths and calm down. I have not had a T ... Read more

Sharon Cotter Dear Jane, the first thing you need to do is take some deep breaths and calm down. I have not had a TAVR, but I had open heart surgery five weeks ago (Sept.23). for a mitral valve repair. I got through it and I’m doing well. I am sure you and your doctor can come up with a plan designed especially for you.... but being in such a panicked state is not going to serve you well. Calm down, get in touch with your doctor and treat one symptom at a time. I had months of anxiety before my surgery date finally arrived and I can tell you that it served no purpose except to render me useless. Calm down, ask God to take away your anxiety, call your doctor and make a plan with him. Worry serves NO good purpose. Get your mind on other things. I walked outdoors, watched a good movie and began working on a jigsaw puzzle, spend time with people who will edify you. It really helps to get outdoors and breath in some fresh air.

Sharon Cotter Forgot to mention that I’m 68 years old. You can do this!!

Barbara Wood Hi Jane, I think most of us can relate, facing heart surgery is scary! The thing that helped me prepa ... Read more

Barbara Wood Hi Jane, I think most of us can relate, facing heart surgery is scary! The thing that helped me prepare the most was spending lots of time in this forum reading about the many different experiences of those before me - it helps to know what you might expect. And the support given here is invaluable too.
I had afib before my surgery ( mitral ) & had a maze procedure along with my repair. You probably want to look into that - I've been afib free ever since - 2 1/2 years.
My brother-in-law, who is overweight & diabetic,
had a sternotomy with heart bypass & repair last spring. He has done very well & has made an excellent recovery.
I can't offer advice on the surgery method, having had a sternotomy myself, but, though scary, heart surgery is very doable these days & they rewards are huge!
Sending all good wishes - you can do this Jane!

Marie Myers With your high anxiety level, you may very well have an ulcer. Bleeding in the stomach or intestines ... Read more

Marie Myers With your high anxiety level, you may very well have an ulcer. Bleeding in the stomach or intestines will produce the black tarry stools that you are seeing. You need to see your primary doc or a gastroenterologist to figure out the black stools. And, take a deep breath or two. You can only move one step at a time.

Mary Haubrick Hello Jane. I can understand about your anxiety. I had TAVR surgery on Sept. 24, and it went very w ... Read more

Mary Haubrick Hello Jane. I can understand about your anxiety. I had TAVR surgery on Sept. 24, and it went very well. The surgeons used a Sentinel Cerebral Protection System to prevent a stroke. The surgery was done via right femoral artery, left femoral artery and right radial artery and left femoral vein access. I was only in the hospital for 32 hours, and had no pain or any heart symptoms. Returned home and started walking 5 minutes four times a day immediately. My one month checkup was last week, and I am officially discharged to start cardiac rehab. I am 76 years old. I hope you will be able to have the TAVR surgery. Please try to give all your worries to God...He will keep you in the hollow of His hand. Hugs and prayers to you.

Frank Giovanniello Him Jane, main thing is to feel good about your doctors, if not, look further. Any heart surgery is v ... Read more

Frank Giovanniello Him Jane, main thing is to feel good about your doctors, if not, look further. Any heart surgery is very scary. Sounds like your Blueberries are doing a number on you. All Good Things !

Rich Hahn I am right at the line between overweight and obese and just had TAVR. I would think TAVR would be l ... Read more

Rich Hahn I am right at the line between overweight and obese and just had TAVR. I would think TAVR would be less dangerous to you than open heart surgery. The risk of stroke is pretty low and you might be looking at numbers from earlier tavr valves when stroke was a bigger risk.

You have a lot on your plate (bad pun), but you need to try to manage your weight and your arthritis. The reason I say this is replacing your valve doesn't cure the underlying cause. That still needs to be addressed. Maybe you can use your valve replacement as the 1st step in your journey to get healthy and live a long life caring for your lids.

Ask your doc about fish/krill oil. It is considered to be great for heart health and also might relieve your arthritic pain. Do lots of research and try to take charge of your health. It's hard, but you care more about you than any doctor does. Make sure you get in a heart rehab program that can help with diet as well as strengthening your heart. Good luck and try to stay positive.

Susan Lynn Jane - I can only echo the great advice from the other heart warriors. I will say that I had the rig ... Read more

Susan Lynn Jane - I can only echo the great advice from the other heart warriors. I will say that I had the right thoractomy entry for my mitral valve surgery and did just fine. If I can do it, you can do it.

Janette Rehua Hi Jane. First like you I'm English from Manchester but now reside in Australia. Please first make yo ... Read more

Janette Rehua Hi Jane. First like you I'm English from Manchester but now reside in Australia. Please first make yourself a nice cuppa tea of course and know That you have loads of support right here online. Like you I have a myriad of health issues from diabetes to thyroid issues to a tumor in my neck. I think you need to relax and consider no surgeon will operate if your weight is too great a problem. Then remember there is very little mystery about the heart and so much knowledge to lessen hugely the risks involved. I am more than happy if you want to join me on Facebook for a matter. I had heart surgery for the 2nd time 3 years ago and let me tell you it's like it never happened its gone so fast. Don't stress you have lots of support here, xxx

Janette Rehua Sorry natter *

Jane Howard Thank you all so much for taking the time to respond to me. Turns out Marie Myers you were right! I h ... Read more

Jane Howard Thank you all so much for taking the time to respond to me. Turns out Marie Myers you were right! I have two ulcers and was having a gastric bleed - am in the hospital having had camera down my stomach - found two ulcers and very inflamed gastritis! I’m now on a therapy for it and finally have a date for my surgery 23 November at the Lancashire Cardiac Centre for a right anterior thoracotomy aortic valve replacement. I am so terrified and right now sitting here in hospital I am beyond terrified. Janette I would love to speak with you on FB, and thank you all again xxx

Jane Howardposted an update

1850 days ago

Hi everyone, I am posting this today because I am feeling in a state of terrible panic. Firstly I live in the UK so patient choice is not the same as in the ...Read more

Jane Howardposted a journal

2262 days ago

I’ve got a date of 24 October for my TAVR. I am very nervous and would like to hear from anyone who has had a TAVR.

Jennifer McInerney Hi Jane, I’m having a mini sternotomy. Incision should be 4 to 6 inches. Hopefully a little easie ... Read more

Jennifer McInerney Hi Jane, I’m having a mini sternotomy. Incision should be 4 to 6 inches. Hopefully a little easier than a full sternotomy.

Marie Myers My 97 yo friend had a TAVR 2 years ago. She was in the hospital 2-3 days and did extremely well. She ... Read more

Marie Myers My 97 yo friend had a TAVR 2 years ago. She was in the hospital 2-3 days and did extremely well. She also had a-fib. The recovery is much easier than an open heart replacement! I am sure you will do well!

Hi Jane, I had a TAVR In October of last year, it was an amazing procedure for me. I had conscious se ... Read more

Hi Jane, I had a TAVR In October of last year, it was an amazing procedure for me. I had conscious sedation and was sent home the next day. Science and technology is amazing and so were my doctors. Any specific questions, just ask.

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