Rob's Journal

So, I wrote a few weeks ago that there was scarring noted on the leaflets of my horse tissue aortic valve, replaced 3 years ago, but the stress echo noted no insufficiency in the blood flow, in fact this doc's test showed my EF up at 72%. When it was checked in April with a different doc in Texas it was 55%. I'm not quite sure which is correct, but regardless I'm pleased. She notes that any shortness of breath isn't heart related, so we'll explore with different docs what's up with that. So GOOD NEWS!! One thing she told me, and I did the math, is that the scarring might be caused by the "unnatural" leaflets on this valve opening and closing....over and over.....in 3 years, at 75 beats per minute, that's like 118,260,000 times this valve has opened and closed. It's a big number........but for now the fire-drill is cancelled.......thanks for all the good wishes, I'm pleased to be able to stop worrying about the heart.....and worry about something else!

I had AVR and AAA replacement surgery in November 2013, all has been well until this past month. I developed shortness of breath, had a regularly scheduled cardiologist appointment on the books, so I waited until then. I also had a TIA back in July, and saw a neurologist for that, who asked my cardio doc to do a TEE and for me to wear a Holter Monitor for 24 hours. I had the TEE last Friday, they found scarring on my new valve (horse tissue), but no clots were being formed in the heart, which was the reason for the TEE. I'm having a stress echo this afternoon. I'm a bit fatigued, breathless speaking in long sentences, singing (I play guitar, fairly well after doing it for 50 years) is weird as I have to take breathes inside of lines instead of normal places. I'm really disappointed in how things are going. I had a terrible, world class upper respiratory infection in May of this year, and I wonder if that caused some damage. After today's procedure I have an appt with my cardiologist on 11-2, I suppose that's when I'll know much more. I guess my question here is has anyone else had a valve damaged after this period of time? If so, what were the symptoms, and what was the outcome? Thanks in advance.....and I'm ok, just a little pissed off actually, but that will pass.....

I was reminded this morning that today is my 2 year anniversary of my OHS. Two years ago today, right now, I was in surgery (for 6.5 hours) at Baylor Hospital in downtown Dallas having my AAA and BAV replaced, and my mitral valve tightened up. It's been a good 2 years!

So last night my wife was watching TV, I'd already turned over and was trending towards sleep. She says to me, "there was a commercial on TV just now about the trans catheter procedure for valve replacement, if you could have just waited a year you wouldn't have had open heart surgery". So I told her that was a procedure right now mostly for those who can't tolerate OHS, but that also I had my ascending aorta replaced, and would have had to have OHS surgery regardless. She had no memory of that, so I had to explain. Then she asked why it was replaced and I told her it had an aneurysm that was at 5.2cm - over the recommended size that says "surgery now". I'm 16 months past OHS, and obviously things have started fading into the haze of memory. So my wife laid behind me, holding me close, and quietly started crying. She said it was all such a blur, and so much happened so quickly. I reassured her that I'm fine, everything worked perfectly (well, pretty much) during the surgery and recovery. The point of this? That our procedures are hard on those we love, as well as hard on us!

We went to see my surgeon and my cardiologist for my 1 year checkup. The surgeon had a CAT scan done, and said all looks fine. The aortic root replacement looked perfect, no leaks! At the cardiologist I had a stress echo, I made it through 12 minutes, which is what I was doing back in the mid 2000's (even with the wrong shoes). The test showed the valve is fine, the left ventricle is almost back to normal in size. I asked what my ejection fraction was and was told about 50%. I'm a bit disappointed in that number, but he said not to worry about that, and that the blood flow looked great during exercise. We then discussed the meds that I'm on. I told him that I was still taking 6.25 mg carvedilol twice a day and had reduced my lisinopril to 5mg (from 10) per day. I told him I still wasn't happy with side effects. I'm a firm believer that I can tell my doc personal things, and I'm not shy to tell this website true things. Ever since going on those meds I've had slight ED issues. Nothing that prevented us from being "active", but it was a concern. He advised that I could go completely off those meds if I wanted to, that I would have nothing bad happen, that they were just to ease along the recovery, but were not necessary at this point. I asked him about reducing them at this point, he said fine, so I'm now on 3.125 mg carvedilol twice a day, and 2.5mg of lisinopril once a day. (Note that I don't have bad high blood pressure, these were prescribed to help with the healing). Within a few days the slight ED issue was resolved. My pulse has gone up a little, staying near 90 most of the day. I haven't been checking my BP, but my hands and feet don't get cold and numb as much as before. I plan to totally go off these meds within a few months, but I'm not in a big hurry.

To any guys who are on these meds and have similiar ED issues, I made the choice initially to be on them as long as it took, and my wife totally supported that decision. In fact she thinks I've been quite silly and says that I've blown the issue out of proportion. I tell her that I'm a GUY, and these things matter!! She laughs....I'm blessed with a wonderful partner, I'm reminded how she loves me fiercely, that that we share the "worst day of our lives".

So lastly, advice to the guys here: talk to your docs, talk to your spouse, be open and honest, and realize that your heart takes precedence....and there's no shame in having a side-effect to medication.

Oh, and I'm cleared for any activity. I have my season pass to Purgatory, though we don't have enough snow yet......My best to all y'all out there! We are all so fortunate!

We are travelling back to Dallas in a couple of weeks so that I can visit various docs. My surgeon is first, with a CAT scan to check that the replaced ascending Aorta is in good shape and not leaking, just a regular check on this. He'll look at the valves too, of course. Then to my cardiologist and a stress echo.

My surgery date was 11-18-13. I actually thought I'd be doing better than I am, though I'm doing really good. My wife and I went on a nice, long mountain hike 3 days ago, and unlike the last time I didn't spend 2 days in bed afterward. We probably went 4 miles total, and some of it was fairly steep, but we both did good! We'll be in Texas for 3 weeks, then back to our mountain home in Durango! I hope everyone is doing well here, I don't recognize names, so the old folks must have moved on, which is the right thing to do! But I thought a one year update would be in order......

Surgery date was 11-18-13. I've been thru rehab, I've done well. I've been working out at home on the treadmill and doing weights, thought I was doing better than apparently I was.

We met some new friends and I wanted to start hiking around here. We live in SW Colorado, a beautiful place, and since we moved here 3 years ago I just haven't had it in me to make the exertion needed for a multi-hour difficult (or even easy) hike. But I thought it was time! We went on a "test hike" on a trail very near our house, same elevation and very easy. My wife, Leslie, did GREAT! I thought she would have some trouble but she did really well, even though by the time we finished it was 88 degrees. I thought I'd done well, but once we got home I got very fatigued, took a nap that lasted all day, slept most of the next day and felt a little short of breath, and had a mild, but sharp pain in my lower chest below my heart, though it only "hurt" when I inhaled deeply. I waited a few days to see if this would all resolve, but it didn't. On day 4 we went to the ER and then I fell into the belly of the healthcare beast. I spent the night, they ran every test known on me, thank god for insurance, and let me go pretty much saying don't worry, there's no indication of any blockages (I knew this to begin with, since I was checked thoroughly before my surgery), valves show working perfectly, though my EF was estimated to be 50-55%, "low normal", I'd hoped it would be up to 60-65% after surgery, but that's better than the 40% prior to surgery. As for the sharp "pain" they said no embolism, perhaps a slight pericardial sac inflammation, but maybe not. Essentially I was sent home with no diagnosis, which was fine. I was most paranoid that the valves were having an issue. I was right to go to the ER, though if I had a cardiologist here in our new hometown I wouldn't have gone there, I'd have called my doc. My cardio doc is in Dallas, and I've been a dope not to get one up here too, since we are here 10 months out of the year. Live and learn I guess.

I'm going to forgo hikes for a few more months and work towards ski season instead. This scared the hell out of my wife.....which I'm sad for! I'm in decent shape, just not good enough, apparently, for a multi hour hike at elevation.

I'm going to add to the list that I did in my first journal a suggestion to those of us that are in the hospital for several days. I was in ICU for 2 days, and then a regular room for 3 additional (I had some minor complications). I kept my surgery plans fairly private, only family and close friends. I have a fairly small family, and it seemed all of them came to the hospital for my surgery. It was AWESOME to have everyone there the morning before I went into the pre-op, pretty surreal but comforting. The night before we all went out to a "soul food" restaurant in Dallas, which is called Celebration, on Lovers Lane, and we made it a family reunion style party. I even picked up the tab, which was fun and funny to do.....
Anyway, I made a request that everyone NOT come to the hospital to see me in my room. I wanted my closest relatives to come see me, my 2 kids, my wife, my sister and my sister-in-law, and my mother. That was it, and I asked even them to limit it to a couple of minutes a day. I wanted REST! I didn't want to entertain, and I would have felt like I was entertaining had all the rest of the cousins, and close friends come in. I told them we would have plenty of time to "visit" once I got out of the hospital, and here was the clincher: If you and I haven't seen each other in the week prior to my surgery, why would you pick the day I'm in the hospital to come visit? I know I was probably being selfish, but this was one of the few times in my life that it was "all about me". I'd never been a patient in a hospital before, and I was pretty sure this was what I wanted. There was enough hospital staff going in and out of my room at all hours, doing their jobs, including the respiratory therapist (which is a synonym for torturer), even in the middle of the night. Lucky for me, everyone stayed away, and I am very thankful for that. I realize that I'm probably different than most, that having lots and lots of friends surrounding them would be more of a comfort, and yes, I'm an introvert, but this helped improve the quality of my hospital stay.
So give this some thought, you're not going to feel all that great while you're in the hospital, do you really want all these folks coming to see you? Make your own decisions, but make it your decision.

So out of nowhere, we were in bed watching TV late last night, I put my hand on the right side of my chest and all of the sudden felt very strange rhythms. I could only feel them with my hand pressing against my chest, didn't feel it otherwise. Leslie quickly put her hand there and was worried. I wasn't, though it's always weird to get that. I have the typical "lub DUB, LUB DUB, LUB dub" type pounding heartbeat sometimes, and I can actually feel my head move slightly with the rhythm.

Docs say don't worry unless it persists, and the rehab nurses say "your heart is in the remodeling process, you're doing great, give it more time, these things happen". So I'm not worried, just watchful.

Oh, it went away within a minute, which rocked.

In the meantime, springtime is starting in the mountains of SW Colorado! Fly fishing before the run-off starts! A glorious time to be alive! Beats the heck out of Dallas, Texas (where we moved here from 3 years ago)!

I put a semi-amusing "cartoon" in my photos here that relates not just to our surgeries, but to life in general, pretty much.

Hey, on another topic, did anyone else get terrible hiccups after surgery? I got them about 3 days post-surgery, they lasted 6 days more, I think. It was 24/7 non-stop hiccups. I would practice a breathing technique that seemed to help about 25% of the time, might suppress them for a few minutes up to 30 minutes, and allow me to get a little sleep, but nothing really worked. Surgeon was a little baffled, said it wasn't common at all. We don't know if it was a reaction to a medication or anesthesia or what. I had to go back in the hospital for an ablation a few weeks after surgery and the hiccups came back after that as well, but only for a few hours.

Also, I found that naproxen (Aleve) worked best for me and any residual pain. I went off the pain meds a few days after surgery - I just don't like them anyway, and naproxen seemed to work better anyway.

Hiccups.......UGH. Haven't had them since!

This is reality.....

A few weeks after my surgery I posted the following on facebook. I only have 50 friends on FB, mostly family, so it's a pretty private thing for us. I'm having to edit names. I read this and still choke up, speaking of emotions.....

Here's a quick update. Some of you know, many don't, and I'm releasing everyone from my request for privacy made a few weeks ago. On 11-18 I had open heart surgery to fix a couple of valves and my aortic root. I had a birth defect that didn't start affecting me until about 10 years ago, and it took 10 years to get bad enough to address it. I've been fully "procedured" now, spent 5 days at Baylor, and Leslie and I are now at the lake recovering, where we'll be for 3-5 weeks, taking it easy. Thanks, in alphabetical order (if I can do this.......) to Andrea for taking care of our doglets and house for who knows how long (coming back in December, so start packing!), Denise for awesome care and translations, needed so bad, DD , my sister, for care and feeding, and being a functioning family!, Dale , my mom, Haley , my wonderful daughter (as the kids say, from another father) for doing everything that needed to be done, stepping up and stepping back with perfect timing, Landis, my wonderful daughter, for perhaps showing her claws just a little to help her daddy-bear (and for making one of the lonely nights in ICU just a little less awful, whatever you told the security guard worked!) and finally, my wife, Leslie, who I would be so lost without, who loves me fiercely and who I have 30 more years to thank!
For as long as I can remember I've been the "pater familias", doing what must be done, taking care of what I can, nominally being "in charge", so for me to have been up on the cliff, eyes wide open, and stepping off - perhaps looking like Wylie Coyote for a moment, and then ---- finally----waking up when you caught me, safe and warm with family at Baylor. A debt that can't be paid backwards, only forward. So THANKS FAMILY!!
Oh, and John and Susanne M , and Miss Jessica you guys too!
Now I'm going to go wipe my eyes and be quiet for a bit.

Real time again, and every word still works. Leslie's sisters Andrea and Denise helped so much. Andi stayed at our Colorado home for 6 weeks, Denise was a cardiac scrub nurse and could translate everything medical for us. Landis showed up at 3am in ICU one morning and I was having a bad time. She brought a little "ball" that she bought that buzzed and vibrated and felt so good on my shoulders......and yes, I'm STILL thanking my wife, Leslie.......

2 weeks after surgery, me and puppy

Me and my youngest night before surgery

Yes, I was late. Not only to start a journal (which won't really have much information, as "My Story" has been updated) but also to have the surgery. A few quick points:

Don't be shy about surgery, don't be afraid, don't wait.

Don't be surprised about memory issues after surgery. It's not just the anesthesia, google "pump head" if you had a heart-lung bypass.

Back and shoulder issues, from what I can tell, are caused by the position that the surgeon has you on the table (in my case for 6.5 hours). I don't even want to picture it.

At 56 I'm one of the youngest in my cardiac rehab. My issues are a bit different than most in my group as I only had birth defect issues (valve and aorta), not a bypass or stents. Rehab has been great, though at first I felt like I was in an old folks home. I love those old folks though.....

The only emotional issues I had were ones of intense gratitude. I guess others have more severe issues. I can still be brought to near-tears with thoughts of loved ones......

Higher elevation (we live in Durango, Colorado at 7,448 feet) makes it more difficult to breathe, obviously.

I gained 15 lbs in the hospital, all water weight, and dropped that and more after getting home. Atrial Flutter (not as bad as afib) caused me to lose 12 pounds in 4 days.

I thought it would hurt worse, my chest that is. I was a good boy as far as following my restrictions, but that was difficult. Five pounds? REALLY? (follow the instructions, no matter what). I felt a little funny about having a lady 20 years older than me helping me load something in my car, turned out her husband had open heart surgery the prior year and she could easily relate.

Dogs don't care if you've had open heart surgery.

Smile. Smile all the time, especially in the hospital, or at least try to put a pleasant look on your face. I can't tell you how unhappy EVERYONE looks in the hospital, and I know they have good reasons, but a slight smile helps, not only you, but those who see you.

Be patient, in the hospital as well as afterward. Things don't happen quickly enough, but don't get agitated. Smile, breathe, rest.......

Consider limiting those who want to visit you in your room in the hospital. It's difficult enough with all the staff going in and out of your room at all hours. I limited my visitors to 5 very close family members and asked the rest to come see me at home the following week. I don't think I hurt anyone's feelings, and it definitely made my hospital stay a bit easier.

Finally, listen to your body, and listen to those who love you.......

I think that's enough. Read "my story" if you want more info. Also, my picture is me 2 years ago with about a four pound bass. She was back in the water within seconds......