I went yesterday for another CT scan and although there has been no change in the size, both surgeons agreed that because of my GCA and family history, that they (and I), feel a better outcome would involve surgery. So I am scheduled for open heart surgery at the end of January.
Even though I am confident in this decision, it is still worrisome. I need to remember and be thankful that it has not grown at all in the last 3 months and wait for another 3 months until I can get this done! It sounds like it’s an intense surgery and recovery! If anyone has had open heart surgery and has any advice for recovery, I would love to hear about it.
Thanks to all of you for your continued support!
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luv2read
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Husband had open heart surgery in August - recovery is slow and do it in your own time. Seek advice where needed and accept support offered. Have help from day to day. All the best.
I’ve had open heart surgery twice this year. The first time was to repair a hole after a heart attack I didn’t even know I’d had and the second time 3 weeks ago to replace a valve.
I’m in rehab now. If you are offered rehab, take it. I’m dying to get home to my animals but its important to take any help offered and to give yourself some me time to build up your strength and confidence. The animals are safe and fine.
The first few days in ICU are good in one way as you are cocooned and totally cared for. The downside is not getting quality sleep because of all the checks and tests. But you are in the safest of hands so let them get on with it. Your job is to relax and not give yourself any stress.
On the ward, try and eat what you can, even if it’s not what you want. Your body and your heart need nourishment. You might not feel so good while they play with your meds but they will be working hard to get the right balance for you. Take books and/or something to listen to to occupy yourself. Netflix on the iPad has been my best distraction.
Finally, ask for pain relief and something to help you sleep if you need it. Good, quality sleep is so important for recovery. Each day you will feel a little better, but don’t rush it. Your body will need time and all the help you can give it. Bon courage.
PS through all of this I’ve been on 7 mg of pred. Not sure what’s happened to my PMR but that will be the next thing to get checked out when I’m over this lot!
Oh my gosh, everyone has put a positive spin on my attitude towards this situation. You can’t know how much you have helped me. As of now, I don’t have my pre-op appointment until a week before I am scheduled for surgery, and I know they will go over all of the scary stuff.
My 63-year-old son had open heart surgery last year for a 5.5 aneurysm on his aorta., So, I haven't had it, but I would applaud all the advice of Nippersmum: every suggestion. My son is 5'9'' and weighs 280 pounds...they had been monitoring him, and he was dieting but never succeeded in losing much weight. I hope, also, that you go to rehab and can just focus on healing. I know he was uncomfortable after the surgery and had a heart-shaped pillow he would hold if his ribs hurt. He went to cardiac rehab, and then it seemed like the steps he took were huge strides. He is well today and drives an 18-wheel tractor-trailer truck 6 days a week, only home for a day. His overall health has improved and his energy level is at a level I don't think he realized he would achieve. My best to you; pain passes, and what you will accomplish will last. I'm so happy that you are having the procedure now. Gregg's was done in Chicago and I see you are from the States. 💞
I’m in Iowa and will have my surgery at the University of Iowa hospital. I am 63 also, but quite small. Roughly about 120 lbs.
I am assuming they will provide some kind of therapy and if they don’t, I will insist!
My husband knows someone who had open heart surgery at Mayo a few years back. They volunteer together and I am planning on meeting up with him to get some advice. He also volunteered at Mayo to head a support group for people who had this type of surgery. I’m feel grateful that he is willing to meet with me and go over his experience.
Thank you for sharing your son’s story! It gives me hope!!!
I'm thrilled that your surgery at U of I~!!! A slender 120....ahhh! Those were the days! I feel you will have an even better recovery than my son. Wonderful that the Mayo patient will give you one on one insight~! I look forward to more updates. My very best. 💞
I had open heart surgery in 2017 following a long period in hospital with endocarditis. The latter had damaged my heart valves so much that the op was essential to repair them.
I can only say that all went well and the experience was not nearly as bad as I’d imagined. I can still remember my wonderful nurses (shout out to Kate, especially), anaesthetist and consultant surgeon as well as my cardiologist, who were all brilliant. The op was lengthy (8 hours) although obviously you’re not aware of that, and it was followed by a couple of days in ICU, when I was very sleepy.
I was then in high dependency on the ward for a couple of days, and was discharged at the end of the week. Amazing really!
Pain relief was excellent throughout and very effective. It did take me about three months to fully recover at home, and I would suggest that help is needed for about a month of that. I didn’t have nurses in, just a good cleaning lady…..and the support of my husband who cooked and made sure we ate well 😊Nutrition and a gradual return to activity are essential and I’m sure you’ll be guided about that.
Good luck to you, stay positive and remember, the idea is that you’re better afterwards! All the best to you xx
28 months since open heart surgery to repair aorta after aneurism (possibly caused by undiagnosed GCAPMR). Lots of rest needed both in hospital and at least 3 months at home. Ask for pain relief plus laxative for inevitable sluggish gut after GA. Take advantage of walkabouts with physios. Someone to help cook and clean for you would be main priority. You'll no doubt be given advice on exercise and approx timescale, but would advise going at own pace (my recovery was slow, and GCA wasn't diagnosed for a further 16 months). Get your name down on rehab class list where exercise is done under close supervision. All the very best for your op and recovery!
I'm praying for you luv2read for peace and healing and a speedy recovery! Wishing you the best. I went through an 8 hour surgery almost 9 years ago. It was tough, but hopefully you will have family and friends to help you when you are home? Be kind to yourself as it takes some time to begin feeling normal again. It took me about 2 months to get most of my physical strength and about six months more to feel like the old me again. I know the time leading up to your sugery will be stressful and scary, but lean on the things that will help you feel centered and hopeful. If I can help at all send a message
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UPDATE ON HOSPITAL VISIT WITH THE FUNK 
Knee replacement soon & on 8mgs pred
~Follow up on visit to Cardiologist
Update on week of BP take 
Update on this long and complicated journey!
