Paul's Heart Valve Journal

Holly P posted a note for Paul that says: Hey Paul!!! Happy Anniversary! Time sure flies for you..... 3 years already??? Now you're getting ahead of yourself. Best I can recall it's been 2 years. Glad you're doing well and sounds like a new adventure ahead for you. I wish you well. Keep in touch!!

Kathy Andrle posted a note for Paul that says: Yes, 2 years ago April 20th was my birthday present, Paul coming home from MGH.
I am glad things are continuing to improve. Keep on trucking!
Love, Kathy

Kathie Calder posted a note for Paul that says: You're impressive! It's also good news -- at least I think it is! -- that you and Kath are returning to Nashua. All the best in this resettlement and in your new job. It had better give you as good a workout as you've had in your previous one, since that seems to have been all to your benefit!

Love and blessings to you both,

Kathie
Reporting from the exit of the scrap heap where I nearly wound up after being struck by a car. I'm lucky, and life is good!

Fred Andrle posted a note for Paul that says: Glad to hear you're doing well, Paul! Yes, heaven can wait! Fred and Marlene

Dear Paul,
Wishing you the best on this day, your birthday May 15th! One year ago on my birthday (April 20th) you were released from MGH from your mitral valve repair surgery. One year and 25 days later - you are still ticking and doing well! Have a wonderful day and wait till you see what I give you for your birthday!
Love, Kathy

Congrats Paul. Glad to hear you are doing so well. My prayers that the good news continues.

Thomas H.
MV Repair 5/17/12 (robot broken so done the old fashioned way....)

Paul, Barbie and I are glad to see your still moving along,,hopefully the snow is gone and we will be up in a few weeks,,Looking forward to seeing Kathy and you,,,Best of Luck,,,,Barb and David

Way to go Paul. Ain't it the truth about having a good backup team? Next year will be even better. Rock on -- DVB

Great news, Paul! Have a wonderful, sunny, and relaxed spring.

Fred and Marlene

Bless you (and Kathy), Paul! Great encouragement and advice for anyone dealing with any scary health issue.

I can especially appreciate the part about needing a good domestic support team (Kathy). The real reason we are in SF now is that, while we were lucky that one of us was up while the other was down, the family was panicking over the possibility that both of us might be down at the same time. And so the kids demanded that we live near one of them, and here we are in SF in our son's very large house. And according to Murphy's Law #1072, since coming here neither of us has been "down"!

I'm smiling ear to ear at this reconnection with my dear NH friends. -- Kathie

Oof. Hope you're feeling better soon, both flu-wise and rib-wise.

Get your flu shots religiously. They cut down all-cause mortality rates by ~30%. Amazing.

Best to you & Kathy in the New Year -- DVB

Hi Paul! Happy New Year! Let's hope for a better year for all of us! How is that pain in your side? Still have it? An xray would have shown if you had a fractured rib....i agree that the Dr. really didn't have any answers and was just throwing something out there to explain it.
Sorry about you having the flu. It sucks. People are dropping like flies here with the flu and respiratory junk. We have been super busy at work (hospital) with more patients than usual. I have evaded it so far.....
How are you feeling otherwise? No follow up for six months?
Good for you for losing weight and eating healthier... I need to do better!
Keep in touch and stay positive!
Holly P

A fractured rib?? Hmmmm, wouldn't that have shown on a chest X-ray? Have you had one since surgery? Sounds like he's grasping at straws.

Well, at least it doesn't appear there is anything going wrong with your repair.
Now you just have to figure out how to 'eat right' while on vacation. that's no fun.


Nancy B

Great news.

Now control the eating and enjoy your holiday!

A watched pot never boils!

No news is good news.

Ran out of clichés...

Hang in there Paul!

nancy B

Hey Paul, I've been thinking of you, and sorry I haven't checked in more often. You sure are being brave....not the least bit depressed about any of this?? I always enjoy reading your journal, you have a great sense of humor and I know that will carry you through what-ever is ahead. Know that I'm thinking of you and keeping you in my prayers! After all, it's not in our hands anyway, is it?
Holly

Hi,
You are one more trooper!! I salute your courage, humor, and perseverance. Prayers to you !!!
Valerie and Al

Hey Paul,

Meant to write earlier, but things just kept getting in the way.

Was pissed to read that your repair failed. Hoping that the 2-week (Holter?) monitor shows some promising news. I have been to see my cardio and an EP in the past couple of weeks to find out why I still have a missing p-wave. It's looking like it won't be an issue, but just surprised that these issues that you never anticipate can come up.

Completely agree with DVB that going back to work would not have affected your repair. Sounds like a poor excuse the doctor might have thrown out there. Dr. Gillinov and the other docs I've talked to stated you can run a marathon once the repair and rehab was complete.

Again, hope the monitor shows good news and you can postpone or even avoid surgery. Regardless, your great attitude and sense of humor will see this thing through.

Best of luck to you,

-Thomas H.

Hi Paul.

Ask for a quantitative measure of the "effective regurgitant orifice" area (ERO), "regurtitant volume" (RVol), and "regurgitant fraction" (RF) off your echo to get the most reliable grading. These quantitative measures are the best indicators of risk and the best diagnostics according to my cardiologists. Large studies used these to follow patients & outcomes, so you rationally assess where you are compared to those study groups.

According to this freely available journal article:

http://circ.ahajournals.org/content/96/10/3409.full

"The thresholds of RVol ≥60 mL/beat, RF ≥50%, and ERO area ≥40 mm2 provide a relatively high sensitivity for severe, grade 4 mitral regurgitation." Grade 4 is the usual threshold for surgery. Check out table 3 in that paper for quantitative definitions of all the grades. [Lead author Dujardin and co-authors are from the Mayo Clinic in Rochester Minnesota.]

On an echo just about everybody shows leakage. The equipment is so good it can see the small amount of backflow that's needed to close the valves.

I'm not a doctor, so consider these discussion topics for your cardiologist.

Best to you, my man -- DVB

Paul:

Forgot to sign my previous post.

Dick D.

Paul:

I have followed your journey from the beginning and was really surprised by your recent post about your regurgitation having returned. Sorry to hear that but I have come to learn that it is not that uncommmon.

First learned of your pending surgery when I saw a post by either yourself or your wife on "Winni.com". I have a summer place on Sleepers Island so your condition really prompted my interest as I had mitral repair surgery done in April '10 at Brigham & Womens. Never posted on HVS because I didn't discover the site until months post surgery. Spent 6 weeks post surgery recovering at the lake going to the mainland every morning to do my walking. My recovery was pretty uneventful except for the fact that when I went to my GP 2 weeks post surgery he heard a murmur. I was really freaked out. Immediately saw my surgeon. He really downplayed the noise telling me not to worry about it, just "go live your life". Two weeks later saw my cardiologist (a B&W doctor) and he put my mind at ease. Bottom line I have a grade 2 murmur and they do an echo every 12 months to watch it. It hasn't changed in over 2 years and they tell me that my chances of resurgery are about 1 in 3 if I live for another 25 yrs. I am presently 65. Left ventricle has returned to normal size and EF is 60 so for now things are according to my heart doc "excellent". Keeping fingers crossed.

Anyway, decided to jump on and send you a note just to let you know that if your leak is "moderate" and it doesn't get worse your not predisposed for another operation. My doc says he has many patients that have developed some amount of leakage post surgery and most never need surgery again.

Let's just hope that neither of us have to do it again. Although, if we do it's better than the alternative.

Thinking of you from out here in sunny SF. Think I'm gloating? Don't you believe it. It's been an unbelievably tough, tough slog with more and more to come, and I sure am missing my friends, and the whole environment, in New England!

Been thinking about you, too, as you all have "weathered" the recent events . . .

Paul,

That sucks, and very sorry to hear that. I think about having to do it again, and although I don't want to, at least I would know what to expect this time around the block.

Keep us updated and will keep my fingers crossed that you don't have to go through that again.

TrentV

Hi Paul.

I'm so sorry to hear.

"Strained the repair a bit too much" is not on the list of common reasons for failed repairs, so don't beat yourself up, that's not the reason. For lists of the reasons see these papers (one with David Adams on the author list and the other with Marc Gillinov):

http://www.mitralvalverepair.org/images/publications/whydomitralvalverepairsfail.pdf (figure 1)

http://jtcs.ctsnetjournals.org/cgi/content/full/113/3/467 (table II)

Understanding why the repair didn't work is probably a good idea so you can find the best path forward. For example, failure due to a ruptured chord that had been surgically shortened might indicate a different path to take than would failure because of continued valve degradation.

If it comes to a re-repair, you may want to look at a center that specializes in them so you get the advantage of their experience and better outcomes. I wouldn't consider a replacement unless I had multiple opinions saying that a repair is not possible.

Best to you -- DVB

Paul, I am so sorry! Cannot imagine how frustrated you must feel! Thank you for sharing your story in the midst of your frustration. One good thing that may come of this for others reading your story is to realize these are doctors/people and although they give us their best shot, they are not gods and sometimes things just don't follow their projected plans. It is still a mysterious process in many ways! Glad you are doing ok and my thoughts and prayers are with you as you work through next steps.

Oh, Paul, what distressing news. I am so sorry to hear that your valve is leaking again. I know it happens occasionally, but it's one of those things you don't think will happen to YOU. The idea of maybe having to do it over again....yuck. I'd be pissed, too. Hang in there.
Selma

Oh Paul, I'm so sorry to hear you're having leakage. Why does it seem that we're hearing about so many mitral valve repairs leaking after a couple of months? I'd be upset too. I don't blame you for being pissed.
Hang in there. We're all here for you if you need to vent.

Nancy B

Well that is not what I expected to read today. What the heck? I'm so sorry to hear that you are leaking again. You must feel like you've been punched in the gut. There are no words. My thoughts and prayers are with you as always. Stay strong and stay positive! That's half the battle!!
Holly

Hi Paul,
So sorry to read your news. My repair also leaks. It was captured on echo; I don't have any symptoms.... yet. You're in my thoughts and prayers.. I know how you feel; it's such a rough road. Hang in there, Kate R mvp repair 5 /12

Paul,
Keep your head up- we know exactly how you feel. My husband Chris had his first heart surgery Robotic to repair his MVP in Sept.22, 2011 and in December 13, 2011 we found out it did not work with Echo and his EF went down to 35-40%. We sent everything back to CCF where he had his surgery done and they agreed with the diagnosis and we were headed back to CCF June 20, 2012 (9months after the first) for his 2nd heart surgery tradiational this time. His repair did not fail but the other leaflet gave way and broke-so essential it had nothing to do with the repair. Dr. Gillinov was able to re-repair it again. We just had his follow up 4month Echo since the 2nd surgery and it should a great repair and avg. EF of 45%.
So hang in there and take one day at a time. You can read Chris Hanson story on his heart valve journal.
Hang in there!!
Samantha Hanson

Hey Paul-
I haven't been on in a while so just checking in on the old gang. How did your ultrasound go yesterday?
Next week will be 5 months post op for my mitral valve repair, still ticking so I guess I owe an update!
Karen Campo

Hi Paul,
I ditto the other HVJ'ers about seeing your doctor about the weight gain.

I have not had a problem with weight gain but had occassional ocular migraines for years before surgery and then maybe once a week or so after surgery, then I went a couple of months withough any. This pas week I had one every day, so on the advice of my cardiologist made an appointment with my GP - she ordered an MRI since I am having them so often, just to rule out anything of a serious nature.

Take care of yourself and see your cardiologist about the weight gain.

Denise K MV repair 05/29/12

Hey Paul, Sounds like you might be taking on water. You probably should be telling your doctor about it. Hope it all works out ok for you. Take care
Mooing all over
Linda H and Elsie AVR9/19/12

Paul! I'm so glad to see you updated. Those ocular migraines seem to be hanging around for me too, although like Nancy said, I usually notice them when I don't get enough sleep or have had a really busy day or two. Each time I get one it reminds me that I had heart surgery. Most of the time I forget....IF you are staying active (chuckling) then you should let your Dr. know about your weight gain, that's quite a bit... on the other hand if it is the ice cream and pizza.... you know what to do.....
Thinking of you as always!!
Holly P

The weight gain can be fluid build up on heart and/or lungs. I have struggled with this (see my journal). It ain't funny, call your cardiologist

John Teeftt HVR 5/4/12 CClinic

Hi Paul,
Fifteen pounds in a week or two is way too much to be normal. make an appt with your cardiologist. They say five pounds in a week is enough to be concerned about.

I recently had an increase in occular migraines too. I attribute it to stress. I had two in one day and another the day previous to that. I have had eye strain lately too....my eyes twitch whe I do too much on the computer and iPad.
How often are you getting the occular thingies?

Nancy B

Good to hear from you Paul, and glad things are going so well for you. Sounds like you read your op report, or else you're really good with numbers!!! Either way, isn't it great to be done with the whole thing and recovered?! It's been quite a journey, and I still keep in touch and read journals, just not quite as often! I've been seeing more journals on 2nd surgeries, and that kind of freaks me out. I know, we just have to put our trust and faith in God, because He is the one in control! Even though I've never met any of you, I feel like I know you better than my co-workers! Keep updating and I'll do the same! God Bless!
Holly P

So glad to hear you are doing so well. Yes, yes, yes! Two of my elderly friends have had valves replaced since you did and they are doing well, considering all they went through. It is amazing what doctors can do these days. Hope you enjoy the fall leaves in Moultonborough.

Jocelyn H.

Hi Paul, it was good to see an update from you. I'm glad you are doing so well, except for those little pains once in a while. You don't have any wires in there so it can't be that! Maybe the nerves are still healing. 8 miles a day at work?? Wow, I thought I put in the miles, but you have me beat! Do you work outside? This heat is awful, so I hope not. I get short of breath every once in a while too, but it comes and goes... I guess we always have that little nagging fear that something will go wrong. Unfortunately, we see enough of that on this website to know it can happen! Take care and keep on healing!!! I'm glad things are going so well.
Holly P

Hi Paul!
Glad your feeling well.
We're up in your neck of the woods for a couple of days....Mountain View Grand Resort in Whitefield, NH. Really nice place and wonderful weather. Hubs and I (also named Paul) hiked to Cherry Pond in Jefferson yesterday. I love it up and don't want to go home. Back to work on Monday though and lots to get done before then.
Take care,
Nancy B

Hey Paul-
Glad to hear you are doing well. What do you do for work that you walk 8 miles/day? I often think I should put a pedometer on. I am a Buyer in a Mfg plant so not just a desk job, but often up and running to chase parts around the shop and off the dock, etc.
Yes, time sure flies. I can't believe how fast the year has passed since I was ill and now repaired with surgery behind me.
Take care and keep us posted.

Karen Campo

Need a cat soup recipe?

Hi Paul, great update! Glad to hear things are going well for you! I'm right behind you at 3 months too. It's hard to believe it's been that long, but when I think about how I feel now and compare it to 2 months ago, there has been such a big improvement! Thanks for your encouragement and advice. I'm focusing REALLY HARD on healing thoughts, and trusting God!
Holly P

Hi Paul,
Good to hear from you.
I seem to be following in your foot steps somewhat. I've been having tons of PVCs (heart fluttering) especially when it's very hot. I'm hoping they go away as yours have.
I also had what they're calling a "neurological event" similar to your arm and leg weakness. I actually went blind in one eye for about five minutes. My surgeon changes me from one 325mg aspirin daily to a baby aspirin and Plavix (an anti platelet drug). They think it may have been caused by a clot breaking off the ring on my valve and traveling to my brain. I'm seeing a neurologist today after cardiac rehab. I'm hoping it all resolves itself with time as yours did.
Glad to hear your doings so well!

Nancy B

Glad to hear you are doing so well. It seems like a long journey and you've done a lot of work. Congratulations! I have a friend who is having a valve replaced right now and also a couple by-passes. She needs lots of prayers and faith.

Jocelyn

Hi Paul! I thought I would send you a quick note. How is life treating you? Are you ready to stop the coumadin yet? When is your next Dr. appt? Good job with the post to Chrissy!!
Work is getting easier for me, it was pretty tough at first. This has been a really good week though and I feel like I have more energy than I have in quite a while! I'm starting to take the 3 flights of stairs at work on a regular basis and am not short of breath! I rarely have pain anymore, although still the numbness. My incision is almost healed, I know, it sounds like it's taking forever and it feels like forever! I ran a fever last week and got everyone all riled up. Had 4 blood cultures drawn, chest xray and an incision culture. Trying to rule out the big "E" endocarditis!!! blood cultures were negative, and the incision culture was positive for the 2nd time. So back on antibiotics for 10 more days, and hopefully this will be the last of it! I know God has a plan for all of this, and I just need to be patient and trust Him! Hope things are going well for you!
Holly P

Way to go Paul! Now lets see if you can get it over 100% - to better than new! -- DVB

Hey Paul,

It's always so interesting to read your posts. You really have a way with words. I think Holly really appreciates all your posts. Glad to hear that you are feeling better.

Take Care

Laurie

Sorry, keep forgetting to sign!
Holly

Glad to hear you are doing so well! Your sense of humor and encouragement have helped many of us through some tough times! Keep on healing!!!