Don's Journal

Kathy Blank  You are doing amazing Don! Glad you opted for rehab- you will find it well worth the effort- my elevated heart rate lasted for months but now it is back to normal! Keep monitoring your blood pressure for awhile just as a precaution- I am glad I kept a record in case something came up- I had a good baseline to compare!

Cheryl Batzing  great news Don! so glad to hear you are doing well! Can't wait to see you and Kathy to compare "war stories." Best to you!

Gina Fiorentino  Hi Don,
Great to read your update! The "one step forward, two steps back" is a good analogy I think. I had Mitral Valve repair 2 weeks and 3 days ago myself, and feeling pretty darn good, except some muscle soreness in my chest (probably using my arms too much). Did you really walk a mile this morning?

Don L  thanks Gina..Yes, SLOWLY walking the mile. Made it to 3000 1 time on the breath machine, which happy about. I have some numbness on underside of right arm, but not too noticeable. Easy to just try doing what you have always done in terms of getting up our lifting things around house. My chest looks like 10 pounds of sand in a 5 pound bag though.

Don L  Hi Deb...kind of lucid feeling, not sure if your awake our asleep....nothing crazy. How about you? Wife took video of me with happy juice prior to going into surgery..very strange to watch because you can't remember anything. It's our sense of humor though.

Gina Fiorentino  That's hilarious. We have something similar that we do too to bring humor to stressful situations. It's good medicine!

Michael Meyer  Glad you are home, I was on opoid so felt very nauseous especially around food. Once the opoid pain meds were gone I could taste food and enjoyed eating. You will be adding to your distance in walking in no time.
Michael

Charlotte Dowd  Don, it's great to hear you are doing so well and 3 days in the hospital is way shorter than people are saying to me (5-7). What do you think contributed to making your recovery go so fast- or at least your discharge?

Don L  Hi Charlotte, for less length of stay, I would say the minimally invasive plays a huge part from research and discussions.(Robotic or Thoracotamy...mine was Robotic). Not everyone is a good fit for minimally invasive depending on other physical and health factors which are pre-screened.(I had a full CT scan, and TEE) no catheterization was necessary since calcium score was 0. Happy to speak with you if like, just email me and I'll give you my number.
Donlaporte@yahoo.com.

Kathy Blank  Don- Dr Smith is incredible and I know you will do great on recovery! My chest tube didn’t come out till day 3- you will feel so much better to get rid of that and the catheter! Great job!!!

Helen Daw  Welcome to the recovery side. Waiting was really the worst part. I am almost 6 weeks after surgery and it has been great. Good luck you continued recovery. Please keep us posted.

Cheryl Batzing  So glad to hear all went so well, Don! Looking forward to sharing "war" stories with you and Kathy Blank soon!

Deb Lewis   Please let Don know that the pain will get better each day. And, don’t be afraid of accepting pain medication!

Michael Meyer  Glad to hear it went well and Don is on the mend. I suspect he will notice the positive changes to his heart quickly.

Michael Neverisky  Hi Don. I am 59 and my mitral valve was repaired a month ago, but in discussion the possibility of replacement with two surgeons at two different hospitals one said the choice was mine and asserted that I needed to understand the demands of the coumadin regime if I opted for the mechanical, the other said he would use a tissue valve and that in 15 or so years something would have to be done. With 2018 technology, he said a catheter with an implant would be his recommendation - but in 2033 the technology will have again advanced and "who knows" what the procedure might be.

Hope that helps.

Best wishes,
Michael

Anna Jones  Hi Don, I'm also in my 50's. I spoke with a surgeon and he said that most surgeons will suggest mechanical based upon age. However, he said that he would not suggest mechanical. He said (and I am quoting him verbatim, so I hope no one will take any offense) "I would not want to put that rat poison into my body. You know that's what Warfarin is, right?". Actually, I hadn't know that.

He further explained that while the risk of injury while on blood thinners is low for younger people, older people fall and hurt themselves more frequently, so the risks rise with advanced age.

This surgeon also discussed the new replacement techniques coming up.

I've decided that if I need a valve I would choose a tissue vale. If it was in the aortic position, I would choose a homograft. But, I am told that mitral valves do not have that option.

However, there are very many people on this board who chose the mechanical valve, and they are very clear that they have no problems with Warfarin and are happy with their choice. It boils down to a personal preference and there is no right or wrong answer.

Michael Cline  Hey Don, I'm 54 and also have to make the mechanical vs. tissue decision. It is a very personal decision. After many hours of research, I'm leaning towards the tissue. Like others in this community, the blood thinner lifestyle is just too risky for me. For others it's not big deal and they live life perfectly with a mechanical valve and Wararfin. I'm looking for the best available tissue valve with a 20 yr life span. By then valve in valve technology should be a walk in the park. Check out some of the websites of tissue valve mfgs such as Edwards Lifesciences, Medtronics, St. Jude Medical, Sorin, Medtronics ATS, Cryolife & Life Net Health. Good luck with your decision.

Susan Killian  If needed I am going with mechanical, I am 64, he is trying a repair but the mechanical is back up. I am an RN so the coumadin does not bother me. Plus they will send me home with my own machine to check blood levels. He is almost 99% sure repair will work though. I really do not want to face the possibility of a 2nd open heart so that is the biggest reason for me not to go with a tissue valve. Also the reason for going for the OHS instead of a minimally invasive, want the surgeon to have the best view he can.

Rita Savelis  Don, this is your decision, and there is no right decision as it is based on your situation/your valve.
In retrospect you will never know how things might have been with another decision.

You should talk a lot with your surgeon.

The noise of mechanical valves vary (you can hear an example on this site using the "search" key). Many patients hear their valves after surgery regardless of type of valve because of the loud pounding that can be an aftereffect.
I can hear my mechanical valves tick only when the room is very very quiet and now (3 yrs later) I admit to rarely hearing them.

A patient on anticoagulants needs to be responsible because she needs to monitor herself. At some point you get stable and find a dose that works for you with small adjustments.
Anticoagulants can be a drag, like OHS, but you get used to them. Today (3 yrs out) I find anticoagulants easy to manage. I test about once a month at a lab and make my own decisions about doses.

Decisions about valve types that come from the medical field tend to include the fact that OHS is relatively safe these days. So multiple surgeries are considered not as big a risk as they once were. But there is not enough data on multiple TAVRs and how many a patient may be able to handle. This data will come, but it's not available yet.

Every decision is a leap of faith.
You make it and then you move forward.
There is no right decision.
If there were one, we'd all have made it.

When I had OHS I admit to wishing that I were 80 yrs old rather than 54.

Let's hope a repair is possible for you!
Take care and wishing you a smooth surgery. Your youth is in your favor for an easy recovery.

Gerald Poulton  Hi Don, at a healthy 65 they still suggested mechanical for me, but they seem to make their recommendation simply because of the fact that chances are a mechanical valve will last your lifetime, but that is not guaranteed either. I chose the Tissue valve and my surgeon uses the Edwards Pericardial bovine valve. I was 7 months post surgery yesterday, the operation and recovery were WAY easer than I had anticipated and life is great. I didnt know what my life would be like on warfarin but I did know that I would still be me and better with the tissue valve. There are two articals on my journal that you may want to read. The choice is yours because you get to live with it. All the best my friend 👍

Steve Farthing  You can also verify your surgeon performs at least 20 MVR procedures per year - the more the better. One study found docs who do less than 20 per year are more likely to end up replacing the valve rather than repairing since a repair is technically more difficult to perform. The average was actually only 5 per year.

Michael Meyer  Don, I had a MVR repair at 50. My surgeon and I discussed and if needed would go with a tissue valve as another repair/replacement would probably be required. I am hoping the MVR repair lasts the rest of my life.

Don L  Thanks ALL for the different perspectives! Personal decision I know, but I am analytical and enjoy hearing insightful opinions to make sure I have thought through with no regrets. Michael M., are you saying you would have gone with tissue or mechanical, since a re-surgery is likely with Tissue? Steve, my surgeon has done over 150/yr for last 6 years, good chance of repair I have been told, but complex since both leaflets. I guess I won't know until I wake up! Glad to hear all of you doing so well, and feel very fortunate to have this community!

Suzanne Finn  I'm 50 and I received an On-x mechanical aorticvalve in November. The noise is not really an issue, I hear it once in a while at night,but if I turn my head, it goes away. I am currently and permanently on blood thinners with no issues. Ive led an active life hiking, skiing, kayaking and my surgeon strongly approved continuing all of them. Feeling so much better since the surgery. All the best to you as you embark on this process.

Helen Daw  When I went to see my surgeon before my surgery, I asked him what he would use if he couldn't repair my valve and he said tissue valve. I am 50 years old. Did not get into the details but I trusted him enough that I said ok. Not sure how they determine what to use on who to use it on?? All the best to you.

Bonnie Stone-Hope  My surgeon felt confident he could repair, and he did. But I asked for a tissue valve to be available, just in case the repair was not possible.

Bill H  Is your surgeon Dr. Robert L. Smith? I have barlow’s too and he was my surgeon, had mitral valve repair done on Nov 13th. Unfortunately, I could not get minimally invasive done due to other non related surgeries I’ve had in the past. He honestly never made it sound like it would be super difficult to repair. He had lots of confidence and said he could do it. He did say of all the MVRs he does per year, about 25% are Barlow’s, which is still a good amount considering he does 150 MVRs a year, putting him in the top 1% of surgeons overall.

Don L  Hi Bill, thanks for reply!. I have consultation with Dr. Smith Jan 23rd, and he is my planned surgeon. Your surgery is recent, how are you doing? I was not aware Dr Smith did Robotic via Sternotomy? Hoping for minimally invasive if possible, but we will see.

Bill H  Hi Don, I am doing pretty good thanks. Its been about 8.5 weeks since my surgery and I’m permitted to lift things more than 10 lbs now which is nice. Still getting back into the swing of things and trying to do more exercise (walking/treadmill) every day. I can’t wait until I can go play some pick up games of basketball again. Since that Jan 4 update, I have spoken with Dr. Smith and he assured me my echo one month post op looked great. He said there was a tiny amount of regurgitation that was hardly anything and it’s nothing to worry about. So that made me feel better. I will have another echo at the end of Feb with my regular cardiologist and then at the one year mark back at Dr. Smith’s office.

How are you feeling? Do you have any symptoms?

Dr. Smith is a great guy and an excellent surgeon. Everyone spoke so highly of him during my stay at the hospital. Before the surgery, the perfusionist was telling me I had one of the best surgeons in the country to do this, so it made me feel better.

He didn’t do anything robotically on me, just a good old fashioned regular sternotomy surgery. I was just so grateful he was able to repair it. I don’t mind the scar. The recovery is longer than the minimally invasive but that’s ok with me.

I wish you the best of luck and I will be thinking of you and praying for you. Please keep us posted. Let me know if you have any other questions or anything.

Don L  Thats great news Bill! I could care less about a scar as well, but a shorter recovery time or less prolonged pain would be nice. My symptoms are very minor, and perhaps driven more by my awareness of the serverity. My heart beats very hard and I can really feel it when lying flat. I also can sense some skips or occasional very hard beat, which may be the heart just 'catching up'. Also, may be getting tired a bit easier but nothing major. My TEE Cardioligist had glowing things to say about Dr. Smith as well, and even sent a close friend to him for surgery.(which I think is saying alot!).

Bill H  I pretty much had the same symptoms as you, Don. Did Dr Gopal do your TEE? Please keep me posted. Take care Don. Everything will work out great.

Phyllis Petersen  Good luck to both of you! It sounds like your recovery is going well Bill, which is truly a blessing. Don, I didn't have Barlow's, just prolapse, which is in my family, and I was aware of it for many years. One of the weird things after surgery was getting used to NOT hearing my heart beat so loudly, especially when laying down. I had occasional flutters as well, but not enough to warrant extra monitoring. Towards the end, before my repair, fatigue would come on suddenly and I tired easily with exertion. I hope you guys do as well in your recoveries as I'm doing and can just get on with life.

Bill H  Hey Don, just wanted to check in to see how everything is going with you. Did you schedule surgery? How did the consultation with Dr. Smith go?

Gina Fiorentino  Hi Bill, Don and Phyllis. I am enjoying reading all of the information you're sharing, and it is very helpful. I just turned 50 in December, and received TEE results- severe regurgatation with my mitral valve as well. Surgery is in the process of being scheduled- probably in early March. Trying to get comfortable here with this news and this new support community. Thanks again for sharing.

Carmel Power  Hi Don. I have Barlow’s Disease and had a mitral valve repair with the minimally invasive approach. My surgeon said Barlow’s is very repairable as there is a lot of tissue to work with! I was very fit going into it but certainly had some issues. Three weeks out, I have very little pain and feel pretty good. All the very best but remember everyone’s journey is very different.