I was talking to a friend whose mom just went through surgery and I sent her this link for a heart hugger. My surgeons had never heard of it (4 years ago) & like many I was given a heart pillow. The heart hugger turned out to be one of the few things that helped a lot post op , along with accupuncture (&I was very hesitant about that). So, I thought I'd share the link with those of you who are preop or recently post op. https://www.hearthugger.com/after-your-surgery
As someone on a budget, I'm always trying to get the most bang for my buck. If I can find an affordable alternative to high-end products, I'm on it, which is why I love perusing Amazon. When you're shopping there, a little goes a long way, and the…
A little late, but just as exciting! 4 years post-op and today I shared with a friend tips for post-op. The best piece of advice came from Adam Pick's book - MOVE! i took that to heart and will post more later ;)
Coumadin and INR has finally leveled out. To be honest it seemed to only take a balancing of having a salad on days when I wanted to have wine. Who knew it could be that simple?! (*note that this was approved by a doctor, but there is not any research*)
I'm about to start making my 2 year check-ups. This will (hopefully) be the last annual check-up for the coronary aneurysms. If they have not changed, then we will move to every 2-3 years.
Thank you all for your support and I'll check-in again soon!
I just realized I never posted for my 1 year! So, here's the 17 month update :)
Things are going great. Life has taken me in some new directions both personally and professionally and I'm grateful for all the twists and turns.
Health is good. All yearly check-ups were positive. No enlargement of the coronary aneurysms! I had 6 weeks of "within-range" INR readings & then it shot up and back to normal. It's a roller coaster, but the techs are great and I honestly look forward to seeing them a few times a month.
The valve noise never went away. The cardiologist told me at my 1 year that it probably never would. Don't get me wrong, I want it to keep beating, but MAN IS IT LOUD sometimes. most of the time I don't notice, but it can effect my concentration on Game of Thrones.
I still really miss ibuprofen and decongestants. I mean I REALLY REALLY miss them. But the loss is nothing compared to the idea that I would have had to replace a pig valve and do surgery all over again. YEA for mechanical valves!
All in all the last few months have been awesome! The first year may have sucked (a lot of it from the random other injuries I sustained), but it did in fact get back to normal!
So, 11 months have come and gone and I’m still kicking!
This month has been really, really good, especially compared to the previous year! Only one “new” injury, another trigger finger, but that seems to have been resolved with another round of cortisone.
INR has been up (5.6) and down (1.3) like CRAZY. It’s a bit frustrating, but the docs are keeping a close eye on it. Have I mentioned how much I miss Brussel sprouts… and decongestants….
I am a bit nervous about my upcoming annual checkups. There’s no reason to think that things are going bad, but the CT scan next Tuesday will let us know if the coronary aneurysms have changed at all. They docs think they were caused by a childhood illness (Kawasaki’s), so odds are pretty good that they have either stayed the same or possibly gotten smaller.
Today I met a girl at Chick-fil-a who had gone through open heart surgery just 5 months ago. She recognized my scar and inquired about my surgery. This is not the first time this has happened and I hope it’s not the last. The “zipper” is a badge of courage and strength and the longer I have it the more it becomes a part of me (although I’m still not 100%).
The gals and I are in ATL for work (and a bit of play ;) to kick off my favorite/birthday month. It’s hard to believe that a year ago I asked to postpone my surgery so that I could have a month of fun first. This time I can relax and enjoy all the activities (ATL, Film Fest, camping, etc) and know that the month won’t (hopefully) end in an 8 inch scar!
Thank you again for all of the thoughts, well wishes, and prayers. They have truly been felt and it’s great to know I have such an awesome support group!
My 10th month was a bit if a blur. Lots of work, healing bones, a newly diagnosed trigger finger & lots of pool time. I made it through with no new injuries and no illnesses ! Occasionally words still escape my mind, but until the doc says to worry I'll consider it a run of "pumphead".
I'm starting to set up my 1 year appointments and so far it looks like I may be able to come out unscathed except for a chest ct (for the coronary aneurysms ). I can't believe it's been almost a year!
11 months is quickly approaching and I promise to have better pics and a better update then! :)
Wanted to get the group's insight- I'm almost 10 months post-op and tonight (for the first time in probably 4 months) i started having sternum pain, just v luke after surgery. I have been coughing pretty hard and figure this is probably normal (although very unfun). I'm wondering if anyone else has gone months without pain and then it's come back (when sick or otherwise). Thanks!
Here's what month 9 brought to my attention:
- sternum pain appears to be gone!
- scar appears to be lightening without the use of scar cream (for the past month)
- I still haven't learned the words to Ridin' Dirty
- Sand can be harder than it looks
- the valve has still not quieted down, but i only usually notice it at night (*thank God for sleeping pills!!)
- the 6 weeks at the beginning of this journey prepared me for my time with a broken elbow (yep...fractured with a ulna bone chip)
-despite trying to track my vitamin K my inr can still drop to a 1.1 :(
- & #sandholesaintnojokeson
It's been a ride this month! The light at the end of the tunnel is starting to look promising!
8.5 months post-op = hook up v. Thumbs up (@the Pirate's Voyage, rocking my sprained ankle & fractured elbow
1 year from diagnosis
Journal posted on July 7, 2015
It's been 1 year since I found out I had a bicuspid valve & would have to have open heart surgery. It's been an uphill battle BUT I've survived Pnemonia, Dx of aneurysm & bicuspid aortic valve, coughing up an an alien baby, Dx of coronary aneurysms (thanks to an undiagnosed childhood illness), open heart surgery, a throat infection, cut finger = tetnus shot, sciatica, botched medical apparatus = new surgery, 2 blood transfusions, bronchitis, sinus infection, sinus infection, sprained/strained ankle, "factured" elbow, & another sinus infection.
Being 8 months post-op I can now say that although it may not appear to have been a great year, each moment was a blessing. God has shown me that by trusting Him I can get through anything!
I'd throw in a thumbs up pic for this anniversary, but the arm cast doesn't photograph well ;) So here's to an uneventful 4 months so I can take a great 1 year post-op pic!
Never as much as when I was a baby did I appreciate my mom as much as I have this past year. She drove 20 hours to get me home, when I had pneumonia & had just found out I not only had a congenital heart defect but also that I was going to have open hear
sunblock & scars
Journal posted on May 2, 2015
I'm wondering if anyone has used Hy-tape or has any other suggestions for covering the open heart surgery scar during beach & pool weather. My scar is 6 months old and the top few inches are still healing and really sensitive. Made my first outing today, kept 50 spf on it and kept it covered with a UV shirt, but Id like to actually get in the pool at some point and I'm not confident this is enough. Thanks!
SO 6 months have official come and gone! Here’s what I’ve learned:
- A person can go from 3 months of pure mental anguish to almost perfect just by waking up one afternoon on a cool October day. That first wake up experience may involve puking all over one’s self, but that moment when you realize you are alive and puking..well… that’s priceless!
- I truly miss decongestants.
- I have not gotten used to the ticking of my valve. It’s fine when I’m engaged in an activity, but is similar to Chinese water torture when it’s quiet.
- Even with lettuce & antibiotics, my INR was low today. (1.8…. seriously… it won’t stay in range).
- I really, really miss decongestants.
- Mind over matter may be a fib.
- I’ve been sick for so long (thankfully not heart related, but it’s been 2.5 months) that I have resorted to watching a Canadian show on Netflix because I’ve watched all the good stuff.
- I have an amazing support group.
- My strength is markedly better than it was a month ago.
- I want to cry like a 3 year old when I think about how much I miss decongestants.
- There is a forest through the trees, even though it’s hard to see sometimes.
- “MOVE.” Kind of like “Just Do It” this is a phrase to live by.
- A Sinugator is 103526 times better than a Netti Pot. In fairness, I did know this before.
- The top few inches of my incision takes much longer to heal than the bottom 5.
Some of these things are not a surprise. I do feel that I was in a better place (although not as strong) 5 weeks after surgery. I was also still taking some pain meds, so that may be the difference :) I pray that the crud part of this experience (and other really random medical stuff) is behind me, and that these next 6 months are going to rock! Or at least decent.
So the end of month 4 and in to month 5 were pretty much the worst few weeks of my existence. I felt like absolute dung & got some equally named assistance from an ER doc and one of my (now former) docs (THANKFULLY not my GP or Cardiologist!). I actually think that the awful moments of worrying about death pre-op were better than my latest stint in the hospital and what lead me there. The drugs of post-op are likely what made that less awful than the way I was feeling physically for those few weeks.
ON THE BRIGHT SIDE: THAT IS NOW OVER!
St Pat's was great, although much less movement than usual due spending the week and a half prior with sciatica, a blood transfusion, "out patient" surgery, a random illness, 16 decent sized bruises and 3 days in the hospital. I was able to have a great time with my friends, and temporarily put the awesomeness of March behind me for 2 days.
So where I am now is actually pretty good. Although I'm not quite yet singing the EVERYTHING IS AWESOME song from the Lego Movie, I am feeling fairly confident this will be a reality someday soon.
We're in the last quarter of the school year and gearing up for Camp Moja, so things are quite busy. Still sticking with an unusually early bedtime (for me anyway) and getting back on the exercise track this week (since this was not a possibility at all for a few weeks).
Finally, I've decided to buy stock in Walgreen's. It's also now my "happy place" which may be a little worrisome but I'm willing to overlook that for now :)
So today was the day I'd been looking forward to since July 7. My goal - to be back to "normal" by St. Pat's. Although it's a different (& bruisier) "normal" than I'd imagined I'm grateful to have made it this far. Special thanks to Janice Bigham for g
Hemoglobin hit a 7.9 Monday. That with a low BP & high INR + a lot of dizziness and headaches = my first blood transfusion
Sitcom dad's don't lie
Journal posted on March 2, 2015
4 months post-op today!
How did I celebrate, you ask? Well first I took a trip back to the hospital for blood work, and earned a groovy new sticker (no tears! .. also no tears pre-op... but I don't remember the rest of the day, so can't guarantee there weren't any )
Friday night I got to experience my first sciatic nerve incident. I do believe that that it was a more painful experience than the open heart surgery. All those years of watching tv dad's throw out their backs, and now I was experiencing it first hand. At least with heart surgery they gave you a ton of drugs!
Doc(s) say no 5k for me this week - so I guess I'll post-pone that goal. Since I'm now without restriction maybe I can actually jog the next 5k.
I did get to take my first ibuprofen since July. It was not as exciting as I was hoping.
All else is well here. 15 days until St. Pat's, and my next goal of making through the holiday without any major pain!
Visiting the hospital for blood tests 4 months post-op. Love my new sticker!
Drugs are bad ... mmmm k?
Journal posted on February 25, 2015
Prednesolone = bad? I've taken it before and it helps a lot, but now it may be causing some issues. First the potential adverse effect of lowering my INR (which is back to 2.3) & now some potential nerve issues
Went to doc today as I'd been having some odd "numbness" in toes, arms, cheek & tongue (all in minimal time increments and not at same time). Doc thinks could be the steroid. Going to reassess in 2 weeks if not this, then we'll look at heart and other meds.
Anyone else have side effects they didnt have before surgery ?
Somehow 8 weeks has gone by since I went back to work. To be honest, the first month felt like 8 years, so it feels like an eternity and a blur all at the same time.
The adjustment back was not as I'd expected. It was mostly great when I was there (or at home doing work), but it totally wore me down physically and a bit emotionally. I think my groundhogs day of a recovery and quicker-than-expected physical recovery lead me to believe that I should be able to conquer the world once again. NOPE. I was wrong. Turns out conquering the world is still a ways off, but I am taking steps to get there.
Other than the few random hours of crying like a spoiled 4 year old (only for different reasons) I've been fairing pretty well. I'm trying to keep things optimistic and rely on God so that some day I can look back at this whirlwind of a year and breathe a sigh of relief and chuckle.
At what more to chuckle at than more aneurysms? Turns out during the heart cath they found not 1 but 4 aneurysms in my coronary artery (1=6mm, 3 =2-3mm). Let's talk about how awesome it was to find this out a few weeks ago! Hmmm second favorite day ever I believe???... AND when the results were looked at by another cardiologist they saw 2 more (although very tiny). SO now I'm getting more tests done. Blood tests this week, a CAT scan in the next few weeks, and possibly another cath in the coming months. Although they aren't sure if this is another luck-of-the-draw congenital thing, a virus I may have had as a kid (muted-Kawaski's) or some random pill my mom may have taken while pregnant, it's being treated all the same.
At this point the docs think with the meds I'm already on, plus the monitoring, that the aneurysms could possibly be managed without any further complications. OR I may end up with a by-pass. Fingers crossed and prayers up that it's the former.
Could things get any more interesting you ask? Well, of course they can! You know my luck (after all I was nicknamed "gimp" in college) my INR has also been crazy low (1.2-1.4) and I've had some funk of a cold/virus/crud-thingy that keeps lingering.
In other news, I'm getting ready for a 5k next week and I'm full swing in the Camp Moja mode.
I've gone back to thinking that light at the end of the tunnel might be a miner's cart or a train after all... only time will tell.