Jackie's Journal

Well...2 years ago at this very moment I was being prepped at UCLA for open heart surgery number 4! Looking back on it...if I had to do it again, I would. Recovery was not all that bad and it's worth now being able to participate in life! So, to celebrate my husband, Dad, and Stepmom are traveling to Northern California. I will be going back to San Francisco where it all began. 40 years ago I had my first surgery there in 1977. It will be great to see the hospital now...especially for my Dad who sat there for months before and after my 1st surgery. Unfortunately, my mother passed in 1991 from congestive heart failure...but she will be there in spirit. SF..my home...my favorite city ever. We will also be visiting Lake Tahoe and other places I went as a child. Happy recovery to all of you out there....it will get better!

I have not posted on here in some time and as I was sitting here, I realized September 9th will be two years since surgery. I'm doing great...I'm not on any heart meds, I'm running, hiking, playing sports, etc...however, I do have one question for the community. Does anyone who is post up a few years still get heart flutters? I've been having them fairly frequently but I don't have any symptoms. Just a few seconds of a hard rapid heartbeat and then my heart goes back to its normal rhythm. My docs have all told me as long as I'm not dizzy, short of breath or anything else it's fine. But, it's still somewhat terrifying at times. The flutters woke me up last night and it felt like an eternity before my heart went back into a normal rhythm. I'm sure it's nothing...but I'm curious of what others here have to say?

Hi there! It's been a while since I've posted on here. I'm a year and a half post op and doing fantastic! Off my Motoprolol completely, working out, running, etc. I do have a question for my fellow heart friends. My scar or just to the right of my scar just at the top of my sternum itches like mad! I've tried all the tricks...coco butter, vitamin e, even had a dermatologist inject the area...nothing helps! I will wake up at night and my upper chest area will be red from scratching the area in my sleep. Anyone have anymore ideas?

Tomorrow marks my 1 year anniversary of heart surgery #4! To celebrate, my husband and I are taking the day to hike to a place here in my home state of Colorado Called Hanging Lake. It's been named a top place to add to a bucket list! I've always wanted to do this hike, but have never had the chance. I'm excited to be able to do this tomorrow and enjoy a difficult hike with the ability to breath! Of course, no trip to Hanging Lake is complete without a soak in the hot springs (followed by dinner). ;) Today, I feel more emotional than I did last year the day before surgery. All in all, I remember being really calm and collected the night before. The surgery went well, recovery was not that bad and I was ready to get back to life within a few weeks. A year later, it's almost surreal. You reflect on it and think "wow, I survived that". I think back on my husband sitting 5 days in ICU with me, not wanting to leave me to go to the bathroom. I think about my Dad who let me recover in his home for 4 weeks, coming in my room to make sure I was ok while I slept. This was my Dad's 4th rodeo with my surgeries so he was an old pro...my poor husband, he was a trooper too. It really is an overflow of thoughts...some good, some bad! On a final note, UCLA was the most amazing place and I have to thank my surgeon, doctors, nurses, CNA's, etc for the amazing care! Without them, I'm sure I would not be here today! (As a member of the healthcare industry, I hope my patients appreciate me as much as I did my care team). I took my experiences with the UCLA staff and used them to better my patient's experiences. I work with Cardiology patients on a weekly basis and I just love their spirit and sharing my positive experiences with them. Good luck to those of you getting ready and those in recovery! You'll do great. In the words of Dr. Suess, "Oh the places you will go". 😀

I had my last surgery follow up today at UCLA and the docs say all is well! My heart rate, EKG's, etc were all fantastic! My motoprolol has finally been cut way back and hopefully I can stop it all together someday soon! Heart surgery number 4 is in the books and the nightmare finally feels over! I come back in a year for an echo and to make sure that tiny little leak around my new aorta is healed or not leaking any further. It's a great feeling to know that all the pain, suffering, emotions, etc are behind you and the future is very bright! I can get back to soccer, volleyball, my snowmobiles, snowboards and mountain bikes without fear or reservations! My only little complaint is my scar is tender but that will heal with time and a little TLC! :). Good luck to all of you out there recovering...it gets easier, I promise!

Hope all of you are having a great Easter! However, question for you folks. I'm just over 6 months post op...doing fantastic I might add! Running, in the gym, snowmobiling, snowboarding, playing indoor soccer, etc...however, a week ago I started experiencing heart palpitations! I've not had these since before surgery. Of course, before surgery I had them all day,everyday. Now, daily, but maybe 5-8 that I can feel every hour. I don't feel them if I'm up and active, just resting. My heart rate is good, BP is 117/76, no symptoms...just flip flops all week! Any feedback is appreciated.

So, I'm just past my 5 months post op and I'm doing great....except the daily constant migraines! I'm exercising, running, hiking, snowmobiling again...but it's always a struggle because I go blind in one eye for 10-30 minutes almost every day! The doctor I work with tells me this really is an unfortunate side effect of the heart lung machine called "pump brain". It is a traumatic brain injury not commonly talked about. I had an MRI which did show small areas of black which are most likely voids in my brain from the machine. Since I can't take imetrex or do any type of injections, my coworker (Doctor) is trying me on light therapy. It's the same type of therapy he uses for athletes effected by years of concussions. I've had two sessions and so far I'm still getting the aoras in my eye sight but the headaches are gone. Im trying to focus on the positives...I can breath, exercise at 100% and my once enlarged heart is back to normal size and happy! I hope all of you are doing well and not having any crazy side effects!

I can't believe today is 4 months post op. Thinking back on it, it's like it was all a dream. I'm doing pretty well, except I had a car accident two weeks ago and this has upset my sternum. Otherwise, I'm at work without any restrictions which is nice. I'm running on a treadmill for 15-20 minutes 3 times a week, etc. I've even signed up for the Flight for Air Climb in Denver in February. It's 57 floors up Denver's largest high rise. All proceeds benefit the American Lung Association. I probably won't make the entire climb, but I'm sure going to try! Anyone out there brave enough to join me...please do. :). For the last few years I've wanted to do this and could not...now I can! It's amazing how things have changed in four months! Nothing much more to report. I did have to go back to 100 mg of motoprolol after being dropped to 75. My resting heart rate decided to spike back up to the mid 80's on the lower dose. Hopefully, in the next couple months it can get reduced again. Hope everyone's recovering well and to those waiting....keep the faith ! You will get better over time, I promise!

Ok, anyone else had this problem??? I've read the heart lung machine can cause this problem, but wasent sure I believed it into recently!! I can't remember little things lately....like where I put keys, glasses, peoples names I've known forever....sometimes I can't find a word to finish a sentence...it's not fun. Hopefully it's just temporary as I've never had this problem before. I've also been told that the higher doses of Moroprolol can do this as well. I'm slowly being weened off these thank goodness! Ugh!!! The price we all pay for life I guess! ;)

First time I've been sick since surgery. I decided to work my first shift in the ER last weekend and of course it was the weekend all the kids came in with strep! I'm on antibiotics, but I don't seem to be improving...in fact I'm now coughing up a lung! I'm only 3 months post op so I'm assuming my immune system is still a bit compromised. Anyone else have this since surgery??

I had 3 month follow up yesterday and everything on the ECHO looked great. There's still a small leak around the new valve but the doctor said it's stable and shouldn't get any worse. The only issue is my sternum. My left side is twice as swollen as the left side. The surgeon did a CT scan and there's some torn tissue on the left side around the bones causing the inflammation. As of now, he said to use Naproxen and possibly a steroid injection. Hopefully it will heal and not require any surgical intervention. Otherwise I'm free to run, be active, etc....but no winter sports this year! :(. My Snowmobiles are just staring at me to go for a ride. But, with the problems healing my sternum I'll have to wait. I do not have to go back to UCLA until June and no more ECHOs...finally! :)

I can't believe next week is my 3 month post op follow up at UCLA. It seems like it was just yesterday I was recovering at my Dad's house waiting for the day I felt better. All in all I feel pretty good. I've developed some new vertigo/migraine disorder. I had a MRI done, but the neurologist didn't see anything worrisome. Now I'm seeing a physical therapist that specializes in vertigo issues. My other major problem is my back. The doctor I work with thinks I have some compression in the thoracic spine area most likely associated with the rib spreader. Hear related things, I still get palpitations from time to time. However, they are benign and the doctors think most likely related to my severe food allergies or horomone issues . Either way, they can be bothersome and I have been hospitalized once for them. They ended up being nothing, however scary. I am finally able to run on a treadmill and try to do this three times a week. Of course, the back pain somewhat controls my level of exercise at this time. I hope all goes well next week. For some reason my nerves are a bit on edge. I keep thinking the "what ifs". Ya know, what if the new valves are failing or leaking, etc....I know this is just my brain playing with me and I have to forget it. Hope everyone's recoveries are going smoothly!

Tomorrow is 8 weeks post op and all of a sudden everything changed (for the better). My heart rate had finally calmed down into the 60's resting so I was able to cut the motoprolol in half. The palpitations have stopped finally and I seem to have an appetite. Yesterday I went snowshoeing at 10,000 feet and did experience some occasional steep climbs...tested out the new hardware in there and it passed! Before surgery I would have felt my heart racing and pounding and been breathing heavy and having to rest. Yesterday, was totally different....I felt amazing! We did 12 miles round trip and today I wasent even overly tired. Things seem to be improving well! To those getting ready for surgery or just recovering, you WILL feel better....but it does take time! Even though I've improved, a lot, I know it's still not 100% over. My sternum is still a bit sore and at times I've got odd sleepless nights. Hopeful my body will keep healing! :)

Went back to work yesterday (part time for three weeks) and felt pretty good yesterday. Today, exhausted!!! Thursday is our busy day with patients so I was up and down and moving all afternoon. I also got my flu shot today which always makes me feel funky for a day or so. One of the EMT's I work with thinks I came back too soon. I am beginning to wonder that myself....I guess it's only been two days so I need to give it more time. Luckily I'm only working 4-5 hours a day....come mid November it's back to my 4/10 schedule and occasional weekends on the ER!!! Ugh....not sure I'll be ready for that!!!

I'm not sure what's going on with me these days! Lately all I want to do is lie in bed and watch TV. I'm 7 weeks post op and feeling pretty well, minus some strange leg pains/sensations and sternum pain. I feel like I've checked out emotionally. I take my daily walks and then retreat to my room and watch TV, sleep or read on my kindle. I feel bad because I'm ignoring my husband and he's doing everything he can to get me to engage with him. I've never been an introvert before in my life! Before surgery I was always out and about with friends or spending quality time with my husband. Now, I just want to be left alone. Anyone else experience this? I'm hoping when I can go back to work in a week or so this will change. I feel terrible because I can tell it's hurting my husband's feelings that I just want to be alone. :(

Just out of the blue I woke up with terrible palpitations and shortness of breath just putting on my shoes! I feel like I'm a week before surgery when I'm 6 weeks post op ! I talked to my cardiologist and he doesn't seem very concerned. He said if I'm not better tomorrow then I'll need an EKG right away and a blood draw. In the meantime, eat potassium and drink more water....I feel like I'm over reacting by thinking I should go to the local cardiologist or ER? My docs at UCLA are almost positive it's an issue of low potassium or possibly anemia from not eating much the past week. In the meantime I'm freaking out!!! Ugh!!!

Has anyone else gone from eating well post op (I'm 5 weeks) to all of a sudden having zero appetite at all? My husband is taking me to sushi tonight to see if that sparks some interest...we will see. I hope so.

I'm finally back in my home state after a month away, and it's great to be back. My husband flew out to California and helped me get back to Denver, which was a lifesaver! Of course that's what husbands are suppose to do. ;). Today I'm getting my hair trimmed and highlighted and start to feel human again. However, we still have a three hour drive to home...a little ski town just south of Wyoming. I'm doing exceptionally well in the altitude and had to finally climb a steep flight of stairs at my brothers last night....no shortness of breath!!! Before surgery I would have to rest at the top before I could continue on. I can't wait to start physical therapy on Tuesday for my aching joints!

I had my 4 week follow up today and I was released from UCLA's care and I'm headed back to Colorado this weekend. My echo showed still a small leak around my new aorta but my heart function is getting better and my left ventricle is not enlarged anymore. I'm a bit nervous as nobody can really tell me how I'll do on the altitude upon my first few days home. My cardiologist doesn't think it will be too bad since I'm already acclimated, however, I've been near sea level for the past 4 weeks. Regardless, I'm ready to get home....I haven't seen my husband in three weeks and my two furry children in a month. I miss them. I think my Dad might be ready to have his house back without my trail of messes around. :). It's amazing how fast it goes by. It seems like just yesterday I was sitting up, nervous ready for my surgery and now it's 4 weeks later. Time flys when you're having fun. ;)

3.5 weeks has just flown by...I've for sure had ups and downs. However, today I've felt pretty good. I figured since my Dad has pretty much made dinner nightly the last three weeks (dealing with my recovery and my terrible food allergies) I decided I feel well enough to finally make dinner. Tonight it's Chicken and Dumplings with honey Cornbread. Since I have a severe gluten allergy, everything has to be made gluten free... This is a chore, but worth it. My biggest problem today are my joints hurt....especially my knees. I have a torn meniscus in my right knee, but both knees really ache. Anyone else experience this? Could it be medications or possibly my posture and not being able to stand straight yet with my sternum? I will have to ask my doctor on Tuesday and hopefully it gets better.

Ugh...couldn't take my lower back pain any longer. Went to urgent care and it seems I have a kidney infection....so it's back to bed....minor setback is how I'm trying to look at this. Hopefully the antibiotics will kick in and I'll be back to feeling better soon.

3 weeks and 1 day....today is not a good day for me. I haven't slept too well the past couple nights due to back pain and I think ultimately I'm paying the price. I got up this morning early and went out and ran around with my Dad doing some errands, when really I should have stayed in bed. I've got a terrible terrible upset stomach which is playing havoc in my system. I felt so miserable I even passed on lunch at my favorite place here where my Dad lives. It's amazing how the last couple days I've felt really well, but today I've crashed into a big brick wall! :(. Like my family keeps telling me, "it's only been three weeks". I realize I can't expect to have on days everyday this early into recovery. I'm sure I'm not alone here. With that said, I'm hitting the pillows for an afternoon siesta!

Wow, waking up hourly with terrible back pain....so bad I can't take a deep breath in. I've not needed my pain meds the last week, but might be rethinking that strategy as I lie here in pain. I wonder if this is the aftermath of a sneezing fit I had earlier in the evening? Talk about painful! Maybe I need to adjust my heaping pile of pillows? :). Ok , so now I'm just rambling. Thinking of all of you who just had your big day. Here's to a speedy recovery...with NO back pain.

I've not mentioned in my previous posts that I have some vocal cord damage from the breathing tubes. Anyone else have this? My surgeon told me it could take months to heal. When I talk it's hard to hear me and if I try and dial up the volume I sound even worse! I'm sure my husband will enjoy this, but it might make it difficult to go back to work in a few weeks. :)

Doing great! I'm starting week 3 of my recovery per my discharge papers. I'm up to over a mile a walk and I'm walking twice a day. I'm still recovering at my dad's and I'm at that point where I'm getting bored. I'm able to do some light laundry and cooking (as long as someone else lifts the heavy things). My neck, shoulders and sternum no longer hurt and I'm sleeping 8-9 hours a night. I've got my weight up a couple pounds, but this is a constant battle. I'm finally able to read again and stay focused which is great since this was my favorite hobby before surgery. I'm renting movies on my tablet everyday to try and pass the time. Less than two weeks and I get to go back to Colorado with my husband and two furry four legged kids. To all getting ready for surgery...it gets better in time. You will look back on it and just feel the relief that it's over!

If my biggest complaint at just about three weeks post op is an itchy scar... I think I'm doing pretty well. I was told no creams, lotions, etc for a couple more weeks. Anyone have any suggestions to help ease the itch??

I have an odd question...I'm just a little over two weeks out and basically since day 4 I've been sleeping on my side in some form or fashion. Now, I love to sleep in bed on my right side holding a pillow. I'm now feeling like this is making my sternum very very tight. Does it seem like a bad idea? Almost like the sternum can't support my weight?

Day 15 of recovery...feeling pretty well. I walked two miles today (combined with all my walks) and not as tired and needing multiple naps during the day. My fevers seem to have cleared up which really helps my general attitude. No real issues other than I seem to be losing a pound a day. Hopefully once I get my appetite back fully I'll get some weight back on. Hope everyone's recoveries are going smoothly.

I had my first post op follow up today and it seems to have gone pretty well . The doctors said I looked great, the incision is healing well and vitals are good. I did have an echo which still shows a tiny leak around my new Aorta. Not what I wanted to hear . The good news is, they are 90% certain as my tissue grows around the aorta the hole will repair itself. However, even with the leak my heart function is stronger with my new valve than it's been for years and should continue to improve. Tiny other setback was a small patch of fluid around my heart which will clear up with steroids. This finally answers the question to my low grade fevers . All in all I think it went well. Two more weeks and they will hopefully release me to travel back home to Colorado. My Dad's been the best caretaker ever, but I sure miss my husband and dogs. Good luck to all those out there recovering or getting ready to have their day. Trust me, each day gets a little bit better... I promise. ;)

Headed to UCLA for my post op follow up. Was feeling pretty good this morning and while sitting in the car got bad spins and felt like I was going to pass out!!! Not sure why?? Im thinking it might be the three hours in stop and go traffic messing me up!!