Ellen's Journal

George Gardopee  Ellen: my own experience with the “full split” was very positive.  If you and Jim have the time and patience, I wrote a detailed day-by-day account in my journal.  

It was not nearly as painful or difficult to recover from as I expected and I am a world-class wimp.  I can honestly say that, other than the restrictions against driving and picking up heavy items, I felt pretty normal in a week or two. I did not take anything stronger than Tylenol by the third day after surgery.  I was hoping for minimally invasive surgery but I had calcifications in my aorta that could have been a problem had they attempted robotic surgery.  Also, the surgeon had to do a repair on a second valve that he did not anticipate. If he had done the robotic approach, it would not have been possible to do both.  Something to consider - it would seem that the sternotomy approach does not require much, if any, severing of nerves and muscles, unlike the other methods.  Everyone’s experience is different, but I found my surgery to be surprisingly easy to tolerate.  Others will likely chime in here, but from reading many accounts, it seems like the sternal pain after surgery is often the least problematic issue for those who have had a sternotomy.  Fatigue is usually a much bigger problem - and I don’t think the fatigue is related to the method of entry. The restrictions on your activity of course are longer with a sternotomy.  I found the most annoying part of the restrictions was not being able to drive for 6 weeks.  I felt well enough that I would often forget about the surgery and I would inadvertently yank on a stuck door. That would cause more discomfort than I felt the days immediately after the surgery - so it is advisable to be careful.  Ask anything at all here - everyone here is very generous with their time and support.

Ellen Higgs  Thank you George.  Jim really did struggle with his first surgery healing.  Not really physically, but mentally.  I tend to feel that when you go all your life being healthy and strong, having heart surgery is a huge knock to the psyche.  He did have issues with the post medications - like the blood pressure medication and the beta-blocker.  He also had side effects to the heart/lung machine.  They ended up taking him off of the medications about 3 weeks after the surgery.  He then ended up with an Afib event in 2020, exactly one year after his initial surgery.  He only had one event, but they did put him on blood thinners for around 15 months.  He is the owner/operator of our construction business so that was not a fun 15 months.  He had to be extremely careful of injuries, as you can imagine, and since the blood thinner was Warfarin we had to monitor his INR every week.
Anyway, we got through that and honestly he has finally been feeling more like himself.  Only to run into this new, unfortunate bump in the road.
He is very concerned about the full split.  I thank you for the encouraging story and I will share it with him.  It’s such a blessing we live in the times we do, because at least there are options for correcting these health issues.

Tom Everson  Hi  my biggest complaint after my aortic valve surgery was   1. Had to wait 24 hours  before I could drink coffee 2 My upper back was sore.  It was not too bad, everyone is different. Stay positive and look forward. 

Adam Pick  Hi Ellen, I'm going to post two videos which address re-operations. The videos may not exactly answer your question above. However, there is a lot of good info in these videos. The real important thing is that you find a surgeon and team that has very good experience with re-ops. Hope these videos help!

Rose Madura  I had a full sternotomy and I didn't have any trouble at all. That was the least of my worries and pain.  Most pain was in my shoulders and where the main line was.  The hospital gave me what's called a heart hugger and I felt it really helped- more than a pillow would have.

Ellen Higgs  Thank you Rose.  With the mini split in 2019 we were so surprised that Jim had very little pain/body discomfort during recovery.  It was almost odd to me given all I had read.  I’m sure there will be a bit more soreness/pain with the full split.  However, he is a general contractor and I’m not sure there isn’t a day that goes by where he isn’t just sore from his occupation alone.   I feel his bigger challenge, as I’ve read with other’s here, is the fatigue and his body temperature didn’t regulate as well for a bit, plus with his pericardium opened his heart could be felt beating by those of us who sat next to him - it was unnerving because no one explained this to us.  I’m so glad that we have that understanding going in this time.  

Tom Everson  You are using it correctly. Write down your questions ahead of time. Ask if you can record your meeting. Make  list  of your symptoms 

Ellen Higgs  Thank you Tom.  Jim doesn’t have any symptoms.  This was just his regular annual follow-up.  It’s been hard to process.

Rose Madura  Hi Ellen.  I'm sorry to hear this and I can sure understand why you are nervous.   What kind of issues is he having with the valve?

Ellen Higgs  Hello Rose, we are told there is calcium build up on the bovine valve itself.  I was not at the follow-up with him, but Jim said they mentioned his heart wall was thickened mildly.  I am going with him tomorrow to the CT follow-up and will know more then.  I’m just so nervous about what is happening and the whys.  He only just had his original surgery a few years ago.

Rose Madura  Oh wow. That seems odd. And I can see why you are concerned. Hopefully the CT scan results will show something more positive. Please keep us updated.

Susan Lynn  Ellen - Heart surgery is a team effort. Sometimes I think it's actually harder for the caregivers than the patients. Take it one step at a time and don't let your imagination run away with you. As Tom suggests, write down as many of your questions in advance as you can. I'd be asking - What's the best case scenario? Worst case scenario? How common is this complication? How did it happen? How many of these cases have you successfully treated? What's the urgency to address the condition? Are there other methods to treat it or delay surgery? Is TAVR an option? And, if surgery is indicated, you may want to identify surgeons who specialize in re-repairs. Best of luck to you! Please keep us posted or just check in for a virtual hug when you need one!

Adam Pick  Hey Ellen, Welcome to our community! I'm sorry to hear about your husband's tissue valve failing. Unfortunately, this is one of the challenges for patients -- there is no perfect heart valve replacement. That said, there is good news. Today, there are many options for re-operations and some of those options are non-invasive, like a valve-in-valve procedure. I think one of the goals, as you gather more information, is for you, your husband and your medical team to think about the lifetime management of his valvular disease. You guys look very young. So, I imagine your conversations with your medical team should elevate a shared decision making process when thinking about the balance of his life. I know that is not easy to do. But, you will get there. Today, I imagine you will get more information from the CT Scan. If you need anything, please let me know. I'm here to help!

Ellen Higgs  Adam, thank you so very much for your supportive message.  I am beyond grateful for everyone who has shared here.  I will definitely reach out. 

William Trankle  I had a porcine valve that lasted less than 5 years--it's pretty specific to the individual's body chemistry as to how long those last.  As I'd already had 2 surgeries, I opted for a replacement of the porcine valve with a mechanical (I have the OnX, and it's great).  Now it should outlive me!  Good luck, and just know that it's going to be okay.

Brady Busch  I'm a relative newbie to the heart valve arena,having surgery about six months ago.They replaced the aortic and repaired the mitral.
An Edwards Inspiris Resilia was used.It's treated with something to help prevent tissue calcification.Here's a little information.
https://www.edwards.com/devices/heart-valves/inspiris-resilia

Kendal Zinn  I am on my second bovine heart valve. My first one only lasted 18 months. I was frustrated to have to go through a second surgery but this one has been flawless so far! I’ve been told I can replace the Aortic valve as many times as my health allows . I’m only 55 years old so I will probably have to get number three in the future. Any questions just ask. 😊👍

Patrick Schweitzer  I just went through a valve in valve TAVR on April 7th. The Trifecta valve failed in 7 years. It was replaced with a Medtronic Evolut that was actually larger than the original valve. Operation was 90 minutes and out in a day. 3 days  later back to normal.

Doran Herritt  Ellen, Sorry to hear your husbands first valve isn't going so well. I too got the valve Brady mentioned above, while it was still in clinical trials in 2015. Pray everyday it keeps going, but you never know. So many things can happen. See Kendall's note above. Anyway, I read about lots of folks needing to get 2nd and even 3rd valves in their lifetime. Just kind of the nature of it with the tissue valves. Its not if, its when. Hoping the tests give a clear picture and you and your husband make it through this (again) in as quick and non complicated fashion as possible. Hang in there. All we can do is keep going! The technology gets better everyday. PS. If you know what specific valve your husband got the first time, id love to hear. Take care. Sending prayers and good thoughts! Drn

Ellen Higgs  So to all of you "thank you". I'm so grateful for the outpouring of support and information.

Brady, Jim has the Edwards Inspiris Valve now. They can't explain the plaque buildup on it, but that is the least of our worries. As an update to all, the CT shows that Jim's Aorta is dilated. Not a good thing and we wish this had been the case when he went for his surgery in 2019, it could have all been taken care of then. Instead, life has thrown a curve ball. So, we are looking at another open heart surgery and this time around it can't be minimally invasive. They will go in and replace the Aorta and give Jim a new aortic valve at that time. He is very upset by the news. I personally feel like this is all deja vu. It was just 3 years ago we had his initial surgery. He did not have a good experience with the heart/lung machine or the trach tube so he has a bit of PTSD. He also does not do well on medications. I am encouraging him to come out and talk about it. I'm beyond grateful to have a wonderful heart team looking after him.

We will be hearing from a surgeon who specializes in this type of surgery. HIs reviews are outstanding and is here in Sacramento, CA. So Jim will be in good hands from what I can tell. The surgery will depend on the surgeon's review of his chart - most specially the CT results. This gives the measurement of Jim's aorta presently. Right now they are estimating his surgery date to be anywhere from 4 weeks out to possibly 6 months - again, it will depend on the surgeon’s evaluation.

William, Patrick, Doran, Kendal - thank you for sharing your stories. I find that, at least for Jim, he feels he’s the only one this is happening to. I know that’s not the truth because of this forum. I will continue to post information as we move forward.

Thank you again - everyone!

Carter Mackiewicz  Ellen, I’m very sorry that your husband will have to go through open heart surgery again. In October, I had the operation that your husband will have. I had a 5.3 cm aneurysm and a bicuspid aortic valve. So, they replaced both with the “Bentall Procedure “. They also used an Edwards bovine valve. So far, so good. I hope this will be your husband’s last procedure for a long time. Best of luck

Ellen Higgs  Carter!…thank you so much for your share. I'm glad to hear things are going well for you and I appreciate the name of the procedure - I will look that up. It must be nice to have 7 months under your belt on the recovery. My husband is not looking forward to the procedure, but I'm so very grateful this has a solution .

Brady Busch  That's interesting.Is it plaque or calcium buildup?I read earlier,that Jim was at one time,on blood thinners,because of afib.Maybe a Watchman procedure could be talked about,with the doctors,if there is going to be a sternotomy done,that will probably be the best time to include it.
It's one of the things,my surgeon brought up during our first talk,but didn't happen,which still has me a little puzzled and somewhat disappointed.I also had a pacemaker installed and there were 44 episodes of afib for about the first month after surgery and then they stopped,but I'm still taking Warfarin.I may also push to get the Watchman,which can be done by a catheter.
The main thing for me,post surgery,was the exhaustion.It took a lot of  will power,just to stand  up for the first few times.But it did and does get better.There was also the afib going on sometimes,to which they gave me Metoprolol,which helped and I take it daily.