Lila's Journal

Wow, well so much for my March 8, 2018 promise to write more! I have really struggled with the emotional side of this more than I ever thought. The feelings of my vulnerability have played havoc with my personal self-care. I am in probably the worse physical shape of my life (fitness-wise) while still so fortunate to have had this wonderfully successful AVR result. I am really trying to get back a level of self-confidence and so I guess writing here for inspiration and maybe just to hear/see myself say these things out loud. I'm still so amazed by the miracle of these surgeries! And grateful also for this site and the information it holds. I hope by checking back in here, I will take more time to read all of your encouraging and inspiring stories more thoroughly. Wishing you all WELL. Lila

I seem to have a lot on my mind these days! It's been over a year and a half since I posted on here. I've decided I should post a bit more because maybe someone will want/need to hear some of my thoughts and experiences! My 2 adult sons were around for my pre- and post-surgery journey, but basically, I went through it alone. So because of that, I don't think I really took the best opportunities to really deal with a lot of my thoughts and emotions and so they're still manifesting themselves even today! And I have learned that your emotional state before, during and after this adventure is of great importance to your recover and/or return to a healthy life. The only other AVR patient I know of is a man about 10 years older than me who had very similar surgery about 2 years before me. He has a loving and attentive spouse and he had "no difficulty" with anything...it was a "piece of cake" according to him. And while I did quite well physically through mine, I can honestly say it was not a "piece of cake". Fortunately I didn't realize that until at least a year later!!! I'll write more but this is enough for now. By the 3rd anniversary (April 23rd of 2018) I hope I'll have what I want to say "out" here in my journal if for no other reason than to be sure I've addressed it all. I am very grateful for this forum and for the ability to have a place to go where we all share so much similarity of thought and process.

7th Cardiac Rehab session was yesterday; they play music of all different sorts each day and just interact so nicely with those of us in the class. I was doing arm pulleys and realized I was singing out loud to the songs; I don't think the guys in the class (there's like 5 of us total me and the rest men) cared or maybe even noticed! But I thought for a second "Lila, you're singing out loud" and then I smiled and though, SO WHAT...it's harmless and I continued to sing and just enjoy the music and the song. It was fun...and freeing! I want to sort of collect and remember the positive things I think differently about? What about you??

OK, so I have to admit to being a bit disappointed because I didn't get a "heart" pillow at the hospital. They apparently get them from a charity or something at University Hospitals of Cleveland. However, they didn't have any. A sweet male nurse folded up a hospital blanket and taped it up and drew a marker heart on it....but it wasn't quite the same. Somehow on the internet today I happened along a link to get to order one! So I did. A silly thing but I sort of want it, even though I'm not doing a lot of coughing, etc. now at 8 weeks post AVR! The link is:  http://www.therapeuticpillows.com/order-therapeutic-pillows-now/retail/ On other notes, I'm awaiting the date for Cardiac Rehab to start. I am struggling with weight post surgery...and it's not from water. It's bad eating . I'm walking but it's the only exercise I'm getting and I think I'm eating out of control which has always been an issue for me in the first place. I have to get this right; all the literature says eat healthy, eat clean. I think I need to know exactly what TO eat!!! Wish me luck; I have got to get this under control....

I'm a bit anxiety-filled but also glad to be going back to work. I'm also going to be beginning Cardiac Rehab. I'd love to hear from others who have gone through Cardiac Rehab. I have my inner vision of what it is and I'm sure it will be much different from that! But I also know that I need it. I need the structure, instructions, overall plan and probably the medically monitored exercising. I'm only 56 years old, but out of shape and needing to lose fat, build muscle and overall fitness. I will benefit from this I am sure. I am going to do it in conjunction with my return to work, as University Hospital is just across the street a bit from my work building. So, well, Wish Me Luck!!!!!!!!!!!

Thursday I will be 6 weeks post surgery. My new pig tissue valve and Dacron aortic root replacement seem to be fine and dandy. Today I did 2 miles straight on the treadmill. That's my second "over 2 miles" walk since surgery. My surgeon wanted me to be between 1/2 mile to a mile by the time I saw him at 6 weeks...so I'm more than there! I'm looking forward to driving and hopefully being allowed back on my Trek hybrid. I ride with a cycling club, Silverwheels, and miss everyone. I attended a lunch and saw everybody this weekend and it was so nice to see everything! I also hope to get off this Warfarin. I just don't like being on it! But, oddly enough, I don't really feel ready to go back to work full-time. I have done a lot of work remotely from home, even though I'm on FMLA. I think that has helped avoid post-surgery depression that some tend to go through. I can honestly see how/why you can go through it. You feel so worthless...especially if you've been an independent soul like me! Also, me doing a little work here or there from home means I can pick and choose and do whatever I feel like doing and it's a great FAVOR for work! It will also make things much less overwhelming when I return so I don't have to figure out or undo or fix what someone else might have done while I was gone! Hopefully, he'll let me return 2 or 3 days a week at first and then maybe back full-time in July. I started using Mederma on the scar as it was recommended by many. I use Materma with spf30 when going outside and I got some night intensive Mederma as well. I also put on Essential Oil Helichrysum which is supposed to wonderful for skin renewal! So a few funny things have happened! It was weird to get a medical device ID card in the mail with the serial and model number of my Freestyle 25m pig valve! I asked the cardiologist if I needed or should get a medical alert bracelet (I don't know!) and he said well probably not; I kind of have a permanent sign on me (my scar) telling them that something has happened in there! And I met up with someone in the parking lot and when she found out I had OHS, she said WELCOME TO THE ZIPPER CLUB! I'm in another club and didn't even know it!

Stuff I am happy I bought/got either before or shortly after surgery! I had packed a little bag of personal goodies from home to take to the hospital with me. Even though I didn't really get to it for a couple/few days afterward, it was nice to know my toothbrush, toothpaste, comb, deoderant, etc. were there. I had all sorts of clothes and I needed nearly none of them. Truth is, the hospital gown just works best with all the monitors and hookups, etc. However, Day 3 or so I did put on a pair of capris and felt like a million bucks to have something "non medical" on at the same time! When I got home, I was pleased that I had purchased my $370 recliner (free shipping) from Amazon.com. It's comfy and huge and if I don't want it after a while well I don't have to feel guilty because I didn't spend a ton of money on it. One of the things I did invest in was a bp machine with an XXL cuff as I'm not a small-armed person and so I knew even with visiting nursing, etc. they would probably not have a cuff I found comfy. But I did my homework and got one that was recommended with medical certifications even though it is home use. I am really happy that I bought my Pulse Oximeter. It was $18 on Amazon.com but it is nice to be able to spot check the pulse and oxygen concentration whenever I feel like it. I'm learning how I feel and relating it to my pulse, etc. and getting to gauge my own body and reactions to things and activities better. I'm also keeping a medications log. I had no idea how many and different medications I'd be on post-surgery. None of them is high doses but it's really hard to keep track...even harder if you're taking pain medication! So I just log it in a MS Word document. I hope this helps someone.....

I had my surgery on April 23, 2015. Full Open Heart Surgery and they replaced my aortic valve with a pig tissue valve and about 4" of my ascending aorta with a Dacron patch. I'm recovering well and feel as though I'm doing better than I had hoped. It's interesting to read and sort of compare to others. It is helpful. But individually speaking, everyone will undoubtedly recuperate at their own pace and with their own emotional issues as well. It is so helpful, however, to read all these differing thoughts and processes everyone goes through. For me, I didn't get comfortable about any of it, the surgery, the post surgery, etc. until I figured out a way to be comfortable with taking the total "leap of faith". I was suddenly so calm once I finally accepted that this is a time and event in my life over which, at least in the actual stage of surgery, I will have NO CONTROL! Everything else sort of fell into place when I got comfortable there. I became especially comfortable with all that because of having "done my homework" and checking out every resource including this site. I don't know if others experienced this. But I would have to log in and check a thing or two out here and then X off because it would sometimes make me anxious. But that really was ok because, it was still here for me to check out later!

I am happy to share any experienced of before, during and after if anyone is interested. I am 1 week past surgery as I write this and so I have fresh perspective on all 3!!! ~Lila