Sean Morris posted a note for Summer that says:
Not sure if you still look at this, and I know I'm way late to the party having just listened to your episode of the Nerdist podcast, but something you said there caught my attention. You were looking for people your age that had gone through the same thing, and I want to recommend you connect with some Marfans groups. I know the root cause of their issues are different, but heart valve replacement is a big thing for them because of valve dilation. My wife, for example, is 28 and had open heart surgery to have her aortic valve replaced at the age of 22. I just thought I'd put that out there as something to consider.
Bryan Malinski posted a note for Summer that says:
My name is Bryan Malinski. I am 28 years old and on august 15th, 2016, i had the exact same open heart surgery procedure done. I had an aneurysm in my aortic valve, because of the two flap opening in my heart. So they treated the aneurysm and inserted a mechanical valve. I am currently listening to your interview on the Nerdist podcast. And heard that you would like to get in touch with people that are around you age. Very funny coincidence and great to listen to your perspective on your procedure and your recovery. so thank you!
John Buckwalter posted a note for Summer that says:
Hi, Loved the podcast on Radio Lab! I had an aortic valve replaced on 8 July. I like the other respondents share similar symptoms. As you mentioned the heart is a pump however it is a semi- smart pump. The heart has conditioned itself to pump harder against resistance (aortic stenosis ) and does well but once the resistance is removed the heart has a hard time reversing the effect
Werner Kujnisch posted a note for Summer that says:
My wife listened to the podcast on NPR Radiolab. She found it very interesting because I had open heart surgery on May 13 2014. I had an aortic aneurysm over 5 cm, which needed to be repaired.
During the surgery, they discovered that my aortic valve needed to be replaced too. So now I have a Dacron artery coming out of my heart and a bovine valve. Yes, I had pain after the surgery and it lasted for about 4 months. 3 months after my surgery, I went back to work as a school bus driver.
I am 68 years old and after my surgery, my surgeon made me promise to walk every day. I did and now I'm running 3 miles a day. I live in DeKalb, Il with my wife, our yellow lab and 4 cats.
I would like to compare notes with you. I'm leaving my email address ... email@example.com.
My cell phone # 815-757-4335.
Dónal Moran posted a note for Summer that says:
I had surgery last September, Aortic root and Valve replacement. Surgery was eight hours. it was longer than expected due to an anomalous regarding separate origin of my CX Artery i believe. After nine days I was back home.
I have the same sound from my heart valve, more like a thud than a click especially at night. I think the Dacron amplifies the sound to some degree. Any stress certainly makes the sound stronger.
Julie Shapiro posted a note for Summer that says:
I just listened to the story about you on Radiolab. I had similar surgery in 2005. i have Marfans and they took out the aortic root as well as the valve (nothing wrong with the valve--they called it an "innocent bystander") and replaced them with dacron and carbon. I have had a very similar experience with an audible heartbeat, plus because of the valve there is a click. I think a lot depends on how I stand and breathe but in a quiet room it really is audible from some feet away. At night it's particularly loud. I guess I just assumed that this was a common consequence of the surgery, though I cannot think why this would be true just now. And most of the time it doesn't bother me now--I've gotten used to it. But sometimes, it's still disturbing.
Anyway, just thought I'd let you know that you are not alone. It is indeed an odd sensation, though.
Just checking in to see how you are doing..
Hope all is well and that you are doing much better!
Looking forward to hearing from you again.. :) ( I haven't been on here much either)
Your almost twin...
Hey there my almost twin....
Just checking in to see how recovery is progressing for you.....this sure is "tough stuff" huh??
I find the mental...just as difficult as the physical most days. It is so hard to believe how long it takes to regain the strength! Before I had knee problems, I used to exercise every morning...speed walking at the track at our local park....then off to the local fitness club for bike, weight, and pool time! That sure seems light years away...and at this point, feels I may never again enjoy that schedule! Oh I know it will happen.....but was hoping it was BEFORE I turned 65!! hahahaha.....
Take Care Summer.....Thinking of You!
I had optical migraines (painless but hallucinagenic in nature) several weeks after surgery. Opthamologist did a full blown test and there was nothing wrong. They lasted on and off for 3,4 months then dissapeared completely. Totally freaked me out at first! Weeks will turn into months and one day you will wake up and not even think about any of this.
radical mitral valve repair (robotic)
Summer, your posts have been especially interesting. Nine months ago Dr. Stewart did my AVR and anurysm repair surgery! I'm 68 and I have zero lingering issues. Frequently I forget I ever had surgery.
Hopefully your pain will subside soon. Amoung my first months issues were a 17 pound hospital weight gain and and some bouts of double vision. All this has totally cleared up!
I remember that I took great pains not to sneeze after the surgery. I held out for five weeks and when the sneezes started they were not all that bad. The "teddy" became my constant companion the first months.
Just take it a day at a time and I'm sure you'll be fine.
Hi Summer, I'm just a few days ahead of you and all I can say is it just keeps getting better. I had the full sterniotomy too, but have had great pain management so have not suffered too much - take enough meds to keep the pain out of the way and it accelerates your healing. Easier to deep breath and walk.
Mr chan is now behind you and you are well on the way to repair. A few more steps each day
Hey Summer, Glad to hear from you. Sounds like a little slow start but you will make it. Everyday has to get better. Just keep telling yourself that and it will happen. Talk about Sissies, you are talking to one of the worlds biggest sissies and my climb is starting to speed up. I tell all the nurses Im allergic to needles lol but that doesnt stop them. I have tried making my husband take my place for some of these tests doesnt work either. What is really bothering me is everyone said the doctor would say now it is time. Mine didnt he said as soon as possible. Talk about something hitting you.
Oh will you take care, one day at a time.
Hope your recovery starts smoothing out. I know I was in considerable pain and discomfort the first few weeks, but honestly,it's kind of like childbirth. It's terrible in the "now" but nearly forgotten in the future. I had lots of complaints 3 months ago....I just can't recall what they were. That's a good thing. However, I think my surgery and recovery were textbook. No real problems. My biggest complaint...I struggle with regaining my energy. I understand that is normal. So hang in there. It will get better, we just need to be patient!
Hey Summer, Glad to hear you are back home. Just can't believe the treatment you got. Anyway welcome home. Now the work really starts. Good luck with that. Remember everyday will be a better day.
Glad you are home; I remember how sweet the feeling to exit those hospital doors. Keep up the pain meds, and if I have one word of advice: miralax....miralax.... Miralax!
Best wishes, Kate R
I am so glad to hear you were discharged, but sorry to hear you are still in so much pain. It really does get better - remember "one day at a time"! The worst is over - you made over the mountain! I will continue to pray for healing and less pain for you. Take care. Denise K.
Glad you are home....hospitials sure can be a lesson in frustration! I have tried to cut back on my pain meds but my daughter, the pharmacists, says "not yet mom"....yep....no heros here. lol...but it does get better everyday!
AC sure is important part of healing..this heat is beyond CRAZY...tried walking outside.....was only successful once...yesterday morning when very cool...the other day had to give up & come inside.
Stay focused my almost twin...6 wks is just around the corner! :)
P.S. Lovin' the Pics!
Hi Summer. I am so glad to hear that you are home and getting some needed rest.
Hang tough, These times will pass. You will soon forget all about this time that you are going through. Keep smiling and stay postive.
Hi Summer, Sorry you are having such a bad time there.Hope you can get out very soon to really recover. I just cant believe the docs not being together. That would be very frustrating. Hang in there.
I am sorry to hear your frustration, but you will get out of there. I was glad that I was not discharged until the 7th day - I really did need the extra day or two. "This too shall pass...", and before you know it you will be home again. Hang in there - you can do it! Take care. Densie K
Hi Summer, I can empathise. I had three false starts, emotionally nailed each time. It turned out that I really did need the extra couple of days, and while they were frustrating, it has made it much easier at home. Hang in there...
Keep asking the tough questions and try to rationalise the answers, it will not always be what you want but that you need
Hi Summer, Glad you are doing so much better. Keep up the good walking. Remember each day will be better. NOw you can tell me that someday lol. Anyway I glad things are starting to improve. Keep up the good work.
Hi Summer, my almost surgery twin.. We did it!!!! :):)
Sounds like you are really "rockin" the walkin' :) They seem pretty impressed with me too @ the Clinic. I am hoping to "bust outta here" tomorrow. Looking forward to going home to finish the rest of this journey! Take care....looking forward to your updates.
Hi Summer, welcome to the other side of surgery. Each day tends to get better, but to repeat what I was told, recovery is not always linear. Just go with it. Your progress will improve quickly now that the pain is under control. Good luck.
Hi Summer, Whoray for LaToya. Glad there is one nurse that is good. Happy to see are starting to get a little better. And tomorrow will even be better yet. I sure wouldnt want to go to that hospital. You hang in there soon you will be home and really starting to get back to normal. Well I seem to have a typing problem so until later.
Wow. Sorry to hear about the pain management thing. Or lack thereof. Complete opposite of the care I got at Mass General in Boston. Those nurses would all get adopted by me if I could. They were exemplary. Then again it was $8,000.00 per day in therem, and at least I got some ice cream out of it all. HA! I find whenever a Doctor says things went great it just means his job is done and that's that. My Surgeons office actually told me "not to come back. They didn't want to see me again". Yeah...Thanks a lot eh? LOL. The pain will get better, she will heal, and life, luckily for her, will go on with a new zest. This little blip on the path will pass in a few weeks and a great big smile will be on her face knowing she has a new lease on life to look forward to. Get to that point in the recovery process and all will be good. Positive thoughts....Positive prayer.
On the pain relief side make sure she asks for it and gets it. If necessary become a real pain in the rear. You are not trying to get addicted but to help for her body fight off the trauma she has just been hit with. The pain can and should be dealt with, there are no excuses. Please ask for Pain Management Help
I know it works, I am one week post op and my pain has been superbly managed, the only time it did not was when I said lower the dosage over a period and experienced break through pain. It took while to get the levels back up, but they are fine
I'm so happy your surgery went well, Summer. And sad about the pain part. Oof, you are a trooper to get through that.
Checking memory with star names. I like that. There was some interesting star/planet news today. A sub-earth mass planet was discovered around the nearby star named "GJ 436" in the constellation Leo. There are now 3 known planets in that system.
Hang in there Summer, speedy recovery! There's a lot going on and we need you to jump back into exploring the universe.
On that note: push the exercise as much as you are able, without doing damage. It jump starts those healing mechanisms given to you by you an unbroken line of "winner" ancestors. Billions years of evolution giving you a great gift.
I was so sorry to hear about the lack of concern on the part of the ICU nurses for Summer's pain. I will keep her in my thoughts and prayers. Tomorrow will be a better day. Take care and God blessings on Summer. Denise Kirchner
Sorry to hear Summer had a rough night. My first day/night in ICU was not good either. Mostly due to (what I perceived) as the inattentiveness and attitude of the nurses. I was left for a long length of time, in pain, with the call button out of reach also. When I mentioned this to my surgeon, he said the ICU nurses are very well trained at saving your life and don't always deal with the niceties all too well. I was surprised to hear that as I thought they were the cream of the crop.
Hopefully Summer will have her pain under control today.
So sorry to hear this. The ICU nurses should be like angels there to help keep you comfortable. Hope you get a survey when you get better and can address that problem. Its not right. I sure hope tomorrow will be a lot better for you. I can imagine how your Mom feels being there myself. Prayers going your way. Stay strong and Mom you make sure you rest too. Your job is yet to start. Take care.
This is a very temporary stage of post-surgery and also the pain and discomfort will dissipate and dissapear before you know it. Also, FYI on the pain pills, this class tends to cause constipation, probably the least of your concerns at this moment?
So sorry to hear that Summer is not being kept comfortable. I will share this with Connie as she is currently resting. She may soon be able to update her blog and leave comments for Summer. We will keep her in our prayers and hope she begins to feel much better soon. Sincerely, Dan
Summer, I'm so sorry to hear that you are having such pain issues. That is just not acceptable with the advances in pain management that are available today! I had aortic valve replacement and aneurysm repair at Cleveland Clinic in March and my pain never got beyond about a 3 on the pain 0-10 scale. It really was not even an issue. It is supposed to hurt some, but they should be able to keep her comfortable and the pain better managed. I will keep her in my prayers (and all of you as well).
Linda Dixon, AVR 3/13/12
Dear Summer and Summer 's family,
So sorry to see your post...... But I can relate to every word. Hang in there; so many are thinking of you, praying for you, and pulling for you. As Selma says, it will improve. Be tough, hang in there, Kind Regards, Kate Rooney
So sorry to hear Summer's having a tough time of it. For me, the time in the ICU was the worst part of the package. After that, it was almost miraculous how much better things got day by day. It's also the hardest place for the loved ones -- you feel kind of helpless. It *will* get better.
Summer - I was so glad to read that your surgery went well. I hate seeing that the term "intensive care" has apparently become an oxymoron at the hospital. Hopefully you'll be out of the ICU and on the floor soon!
Whew!!! I'm happy your surgery seemed to go well Summer. I'm thinking of giving the surgeon my iPhone also to take pictures. Hope he doesn't forget it in my chest....I might miss an important call!!! I'm praying the rest of your hospital stay is uneventful and as comfortable as possible. Warm Regards, Lee Castro
Welcome to the other side of the mountain...the hard part is now over. The recovery will get a bit better every day and soon you will be back doing everything you want to do. I had the same issue and am doing fantastic...so will you..
Hi Summer, Glad to see you did amazing.Welcome to the other side of the mountain. Now you can race Connie down the other side, just not to fast though. I will be waiting to hear from you the report of how it is. Heres to a speedy recovery. Said a prayer for you guys tonight.
This is the very first time I've arrived back to the journal in at least a year. Something just made me re visit. I underwwent my valve repair December 2010. The first few days are very uncomfortable and then litle by little time takes over and you get stronger, start doing all of the things you once did. Eventually you wake up one day and say, "wow" can't beleive I went through all of that and survived it!
I wish you the best. Let me know if there is anything I can provide you in terms of information about yourt recevery process.