Angela's Journal

Hello everyone! I need to paruse through all the newbies, there are so many! :) I'm 20 months post BAV replacement. INR has been good and steady, going in for checks once a month. I've got a question for you all - anyone experiencing any new sternum pain feeling "back to normal" for quite some time? I've only started experiencing the pain, in the very upper sternum, the last few weeks and primarily when i stretch my arms back or reach out with my left arm. We have started a MoveSafe program at work, that involves being aware of posture and stretching, so I'm assuming now that i'm straightening up my posture, my sternum is 'resettling'? It's mostly a dull pain, but sometimes I'll get a little 'pull' which reminds me of how I felt about a month after recovery, when the nerves were waking up. Anyway, just wondering!

Hi all! I'm almost 16 weeks post op and have been feeling fantastic, until about 4 days ago. I started feeling PVC's mainly in the evening. I've had them for a few years, then they faded away after surgery, but now are back. I've been caffeine free in my diet for almost 3 years. At cardiac rehab, they have been appearing on the screen, but it don't feel them. I started running very short distances a few weeks ago. I do notice they 'flare up' after I sit or lay down, like relaxing makes them start up. Anyone else notice a change or increase in their PVC's after a noticeable lessening of them? I'm calling my dr tomorrow, too. On a happier note, I'm finally driving and got my little adapter thing to interrogate my ICD over the phone from home instead of a trip to the dr. I get to share my story at Boise's Go Red for Women luncheon in Feb as the events passion speaker! :) was also our heart walk's 3rd highest fundraiser and my story was feature in our local paper and news station. Been a pretty exciting last month.

Going for 6 hour days this week, then full time next week. Was nice to be back to "normal", although it'll feel more normal when my electro dr clears me to drive in a couple of months. Been sleeping MUCH better and still doing great with my walks. No cardiac rehab has been scheduled for me. I've been doing really light weights and stretching along with my 3 mile walks. INR doing good at 2.1, allowing me to have longer stretches of days between visits :) Life is just great! So happy everything has gone so well!!

Time is flying by. Amazing to know roughly one month ago I had open heart surgery. Not too much has changed in the last week, but I was inspired by my new friend Andrea to measure my scar, just about 4.5 inches. Not too shabby! I still have a big scab at the top of the incision, but everything else is healing well. Walked 3 miles yesterday! Spirometer up to 2500! I have a dr's apt on the 11th to see if she'll give me the ok to go back to work part time, then roll into full time if part time isn't too strenuous. Sleep is still up and down. I took an ambien last night and slept like a rock, but want to try to avoid relying on it. I thought all my walking and being busy throughout the day would tire me out more, but it's not. Sneezing isn't so bad anymore, too! haha, I never thought I'd say that! :) INR was 1.9 today, so I think I'm starting to level off, yay! Don't have to go back to clinic for 10 days instead of the 6 or less I've been doing. I added a couple new pictures too :)

Well, aside from continued sneezing (thank you allergies, I loathe you even more now!) I'm feeling pretty darn good! Again, sneezing is the only real discomfort I have and if I can grab my pillow in time, the act isn't so bad, it's the afterwards that leaves some soreness. Walked 2 miles with my kids and dog in a little over 30 minutes, and have done some light lower body stretching after my walks. Spirometer up to 2250. My INR finally came back up after the last two checks at 1.5 and 1.2 - 2.1 today, woohoo! My goal range is 1.8-2.5. Still not falling asleep in a timely manner, usually around 11:30, and wake up a few times at night. We go to bed at 9 - 9:30. My dr suggested taking a pill and a half of my oxycodone before bedtime, and since I don't take any for pain during the day, I just take one pill, but it's not doing the trick. I'll call Monday about sleep. Thankfully I sleep in till 7:30, but if I'm going to prep for going back to work in a few weeks, I'm not doing myself any favors, as I would normally wake up at 5. Been an exhausting week with my kids on spring break, my husband went back to work this week and mom is ready for more rest time next week :)

You feel it coming on, and remember how nice it feels to sneeze, get a good cleaning whiff of air out, then as you are inhaling remember....wait...this part is gonna hurt now! And it did. I think I held back on the expelling side, and think my body wouldn't let it go all the way. Thank goodness. Ugh. Will only get better from here! :)

And I think it helped with the back pain today, but definitely not last night! Woowee! When I initially laid down, things had to readjust and reposition and I had taken a pain pill an hour ahead in anticipation. After some cringing and deep breathing, I felt comfortable about a half hour later and slept great! Got my spirometer to 2000 today too! Went for an outing with my hubby which included a full on grocery store visit (since we had been gone a week + for surgery and were low on groceries) and I walked around the store just fine :) Each day feels better. Hope everyone had a fun St Patricks Day!

Man, sure is good to be home! Ok, I'll be posting full coverage and be more detailed this post. Day of surgery: arrived at 0515, quickly moved to the 'holding room' to dress into a gown and get the start of all the IV lines. My husband got to come and sit with me till about 0645, when they wheeled me away. Last thing I remember before surgery was lying in the OR and meeting the staff. My husband got updates from the surgical nurse and my surgery took approx 6 hours. Dr Miller was so nice to keep my incision as small as possible, and my ICU nurse said that explained the length of time gripe from another dr in the OR. It wasn't anything mean, it just made performing the surgery harder. I was moved to the intermediate care floor about 7 Saturday night. Stanford is one BUSY hospital! First night in my regular room wasn't bad, the next morning I had my little hiccup with the low red blood count and transfusion, but everything kept going uphill from there. I did sit up out of bed for every meal and did at least 3 laps 3 x a day around my unit. The nurses and assistants were great!!! Whenever a vital check or late night medicine dispensing was needed, everyone was so nice to try to use minimal lights and kindly and quietly come in to wake you. You hear life flight many times throughout the day as well as any time code blue or red is called, so any quiet you get it great! My WONDERFUL partner by my side through it all, my husband Jeremiah, found a shower cap shampoo/conditioner deal and gave me a shampoo/towel dry. After 4 days, it was GLORIOUS to get my hair washed. I didn't get my chest tube out until late Tuesday though, as I had a lot of gunk in ma belly, and you can't shower till the chest tube is out. I also got the PICC line taken out of my neck that night. Wowza! That is one hefty catheter in your jugular, but very nice and effective to deliver highly appreciated pain meds or blood fast. Tuesday night was also my worst night of sleep. I couldn't fall asleep until about 1130 or midnight, and woke up a few times each hour, then was up for good at 0330...Blegh. I also had three chest x rays done Tuesday and a very early one Wednesday because I had gotten a few batches of PVCs after the PICC line was removed. Follow up echo done, a couple EKGs and by Wednesday at 1 (after a REAL shower) I was sent happily on my way. Today is my first full day home and I slept like a rock last night. I'm still having terrible discomfort in my lower right back, something the drs said would be normal, but it seems to out power my pain meds. My chest muscles/sternum actually feel pretty good considering what just happened to them. I can hear the clicking of my valve if it's quiet enough, too! I did go for a walk around the block with my kids and dog and took a nice nap. Still not getting my spirometer too high, 1250, and hope to improve on that. Oh, taking all my pills is hilarious, too. I have a list from the cardiac nurse when I was discharged, but I had to make a separate list of AM, PM and midday meds. Overall, my surgical experience from start to finish was fantastic. Dr Miller stopped by my room 3 times during my stay. He is a wonderful person; great personality and super intelligent. All the staff was helpful, showed they really cared by truly listening and also made my stay fun. I just don't want to ever do this again! Dr Miller said it'd be a good couple weeks before I'd feel good enough to thank him!! Hee hee :)

I was moved out of ICU in less than 12 hours. Operation was a success and had a good night last night. This morning I started getting really hard beats, and my red blood count was low. I'm working on my 2nd unit of blood, but feeling much better. I've eaten and gone to the bathroom (a big deal after surgery) and working on my spirometer. Ugh! That thing is brutal! Might get my chest tube out tomorrow!

Had a full day of pre op preparation, meeting with Dr Miller and checking out this beautiful campus. I really enjoyed my visit with Dr Miller. He shared all his thoughts, went over my echos, angiogram and chest x-ray with great detail and genuine concern for me. I have no doubt I'm in great hands tomorrow. I'm surprising myself at how calm I'm keeping in light of what is going to occur tomorrow. Did my special soap bath and now to rest up. I get a brand spankin new valve tomorrow!!! :)

I have a pre op echo at 7, followed by some lab work and meet with Dr Miller. Friday I will be having full open heart surgery, as my valve is in too bad a shape for repair and the less invasive. I'm good with it; I'm ready and actually excited.

Well, the date is set! This Friday, wow!! I'm ready, but to finally have a date set and so quickly is both exciting and a bit nerve wracking. My dr called just about 2 hours ago and wants me to have a TEE tomorrow. Because our drive is so long, she wants to have everything good to go. Does that sound normal? I think everything is still a go, but this last minute TEE has me and my husband a little on edge. Well, I've got to go over my checklist and pack up. Pray this TEE just further confirms I need this surgery!

Today I met with my cardiologist and discussed options for my surgery. I have a severe leaky aortic valve; repair was ruled out today and I had to decide on a mechanical or tissue valve, with much urging by my cardiologist to get a mechanical. She has done some great questioning and gathering opinions from other great dr's around the country, and the majority agreed a mechanical valve would fit me best, so mechanical it is. I don't have a surgery date set yet, but am on track to have Dr Craig Miller at Stanford perform my replacement, hopefully in the next couple weeks. My cardiologist said she was going to see if minimally invasive surgery would be an option, but I am fully prepared for open heart. Stanford will be about a 13 hour drive from Boise, so any information about patient family lodging would be so helpful. My cardiologist is optimistic about a reasonably short hospital stay because of my age and I hope she's right :) I've been anxiously awaiting this surgery since my event in Jan; this will help bring additional piece of mind to me and my husband (in addition to my ICD installed right after my event). I'm ready to be well and resume normal life. Here we go!!!