Ericka's Journal

I can't believe it's been 6 months since my surgery... THE BIGGEST EVENT OF MY LIFE... How quickly things go back to normal. I am more than 100%, we had our first big snow here in Illinois last week and I could not believe how much easier it was to hike through the snow, the shortness of breath and pulling sensation in my jaw are gone. I didn't even realize that I had symptoms of a bad valve until they were gone. I did have a scare, turns out I had an abscess brewing in my mouth for the last few years as a result of a missed root in a root canal. Neither my dentist nor endodontist saw the abscess, despite having discomfort and inexplicable sinus infections for the last two years. It was disturbing to find out I went through open heart surgery with this. I ended up having a surgery through my gum to clean up the infection and seal off the root, which for me was terrifying, I have horrible dental panic disorder and can't have epinephrine because of that. Novocaine does not work nearly as good without the epi, it wears off very quickly. :( Hopefully the procedure worked and I won't have to go through any more anytime soon! We put in a paver patio a few weeks ago, over the course of 2 days I moved a few tons of pavers and sand. With the exception of two spells of light-headedness near the end of some very long days, I did great! I could not believe how strong I was and how great my stamina has gotten. I do run a bit low with my BP, I am sure that is what caused the dizzy spells. I think my biggest roadblock now is incorporating regular exercise and being comfortable with pushing myself. It's funny I can carry tons of pavers, but put me on a treadmill and I am scared about the discomfort of pushing myself hard. I know the only way to get over that is to keep doing it, and this winter will be a great time to focus on that. Even with my trepidation I do feel like a million bucks after a bit of exercise! I also get migraine auras at the drop of a hat now, though not all of them end up in a headache. Prior to the surgery every aura ended up in a headache, but I did not get nearly as many of them. Interestingly enough, if I take some Magnesium Taurate when the auras come they are usually shortened greatly or eliminated. I'd love to hear if others have had the same this far out. If anyone has any questions I'd be happy to answer them. Good thoughts to you all. XOXO

My valve is 3 weeks old today, how exciting is that?? It's so weird that I have the surgery three weeks behind me now, I spent so much time ruminating over the whole thing it almost became my identity. Who am I now? The same person really, maybe with a little more gratitude for life. Here are some random thoughts that I hope will be helpful for anyone planning or just having gone through surgery: Random thought #1... Drugs suck I know I have been super quiet since the surgery but the migraines were so unbearable, I couldn't fathom spending more than 5 minutes out of my chair let alone sitting at the computer screen. I was having twice a day migraines with auras, when I wasn't having the auras I had a constant haze of light over my eyes. I was terrified that this would be my new reality, and so sick and nauseous all the time. The good news is that I think I have solved that issue, it was the Metoprolol. I accidentally missed a dose last week and felt SO much better, so I decided to stop taking it until I saw my Dr this Monday, every day I got better and better. Luckily my BP is fine, still below normal actually, and though my pulse is more touchy I stay at about 70-75 BPM unless I just ran up and down the stairs or something. My cardiologist gave me the clear to stop taking that med, YAY! Every day I am getting better and better at such a miraculous rate now, it's so uplifting! I can also contribute the following symptoms to that med as they have all significantly cleared up or disappeared since stopping it: - Vertigo - Nausea - Diarrhea - Auras - Migraines - Light "haze" in vision - Jittery/anxiety feeling - Skin crawling - Sweats, I had to shower twice a day because I was sweating so badly - Insomnia So if you're really feeling horrible don't assume that you have to live with it. There are other drugs you can try, or as in my case, drugs you may be taking that aren't needed. Be your own advocate and push until they help you find a solution! The nurses kept telling me I just had to live with what I was going through, they had no solutions for me, I refused to accept that. Random thought #2... Scary thoughts and their uselessness All the things I was afraid of never came to be, and I was surprised about what my real struggles would be. I was terrified at the prospect of a racing or abnormal pulse, it consumed me, it never came to be. I wasted hours upon hours ruminating over something that never happened. I never expected though that my pain management would be so difficult, I mean how long have pain meds been around?? Yet everything they tried made no real difference for me, except for NSAIDs which of course they didn't want me taking because of the Warfarin. I ended up taking the Aleve and ibuprofen while we carefully monitored my INR just for sheer survival. I was also terrified of the BIG BEATING HEART. You hear a lot of people complain about how their heart beats so heavily and loudly since the pericardium sac around the heart has been cut open, I was convinced this would keep me up at nights while I listened for my new heart valve to break. It almost makes me laugh now because it seems so silly. I have no BIG BEATING HEART at night, it's the same as it's always been, and it's certainly not keeping me up at night. So whatever the little voices in your head are telling you today, I say you tell them to shut up, they are merely robbing you of the peace and joy of this day! Random thought #3... "The Girls" I found spagetti strap tank tops with sewed in cups at Target and have worn them every day, they contain "the girls" nicely while staying away from my incision. I love them. Random thought #4... Warfarin Three weeks in and my INR is only 1.1 on 6 mgs of Warfarin, they just upped me to 8 mgs 3 X's a week until next Monday, apparently I have sludge for blood. Coumadin clinics are hard to find by me, I went to the closest hospital and they actually drew blood out of my arm, I told the nurse that if I had to keep doing that I would look like a junkie in no time. I found a clinic about 30 miles away that I will be going to from now on. Random thought #5... surgery cost I've seen several people ask about the cost of this surgery, so far I have received the "facilities" bill (for 3.5 days) which includes the room, radiology, labs, recovery room and stuff like that, this does not include any doctors. $92,505.27 Random thought #6... Periods I pretty much skipped the one I should have had a week from surgery and haven't had one yet, any women interested should remind me in a few weeks to talk about how that goes on the blood thinners. Random thought #7... "Pump head" My attention span is pretty short, but I attribute that more to the pain and weird sleeping patterns than anything else. No "pump head" as far as I can tell, this doesn't seem to be a thing that hits everyone. Random thought #8.. Exercise I feel and felt from the beginning like I could walk forever, if it hadn't been for the stupid migraines I think I would have progressed much further than I did today. I had short breath for the first week, but that resolved very quickly along with the pain in my lungs. Really, lung function was almost not even a thought for me, so again, everyone is different. This was not at all an issue for me, I graduated from the spirometer VERY quickly. The chest pain however makes my upper body pretty much useless, even walking the weight of my arms is too much sometimes. The pec muscles scream at me all the time. So that's my brain dump, if anyone has any questions I would be happy to answer them. So much has happened in such a short amount of time it's hard to decide what people care about or want to hear, and what they don't. Good thoughts to all of you pending or just going through surgery, I really hope yours goes as well as mine did!!! XOXOX

Hi All, has anyone dealt with post surgery migraines, like two a day? Normally I have 1-2 migraines a month, since the surgery I am having two aural migraines a day with constant visual disturbances throughout the day. I've called both the surgeon's office and my cardiologist office asking if they've had experience with this and any advice on how to stop them, my favorite answer so far has been "We don't treat migraines."

I can't even sentence before 8:30, I hope Dr McCarthy is a morning person! :) I keep reading your guestbook posts, they are bringing me comfort this morning, though I warned DH not to stop the car or I might jump out. Lol Hardest was saying "See you later" to my furry babies, though their favorite Aunt Dawn is coming to stay with them, they probably won't even notice I am gone. I'll post as soon as my thumbs and eyes are working, positive thoughts to my sisters and brothers also having surgery today. My love to you all.

It's been such a tough year, last Aptil my Aunt nearly died of some mystery infection, they still today have no idea what made her septic. Then also in April my mom was diagnosed with pancreatic cancer. In July some guys followed my fiancé home for cutting them off in traffic, they pulled a knife on him and punched him in the head. One was a convicted murderer and the other a convicted rapist. In August my mom got so deteriorated from the chemo she had to do residential rehab for two months after 2 weeks in the hospital. Just a few weeks ago my dad went in for what was supposed to be a laparoscopic repair of an abdominal aortic aneurysm, the repair collapsed at the end of the surgery and they ended up having to open him up and redo the whole thing. For a day after they thought that maybe the surgery had paralyzed him, that was horrifying. Thankfully after a week and a half of rehab he is now home and no paralysis. On the same day as my dad's surgery my aunt landed in the ER with a fractured vertebra, thankfully it was the same hospital so I could just run back and forth from her to my dad. Mom is finally stable but on oxygen 24x7 for COPD. I am exhausted, and with this looming surgery I am finding it harder to provide the support I want to give to my family. Poor Joe just tried to derail my path to the shower for a kiss and I told him I was too tired. I feel horrible. I don't mean to be a baby, but right now it's just hard.

Hi All, I am looking for recommendations on a low cost but reliable blood pressure machine and an ACCURATE thermometer. I have three different digital brands and they give three different readings with a delta of over three degrees! I have no idea which is correct. lol

Tell us again how the anticipation is the worst part, and how it wasn't as bad as you thought it was going to be. I see so many posts from people who are just SCARED, could you give us something positive to hang on to?

I was hoping some of you could respond with how often, if at all, you used your primary/family doctor for surgery aftercare. Or did you mostly rely on your cardiologist?

I have a bicuspid aortic valve, it's been stable for as many years as I can remember, barely any changes at all. This is my first year going to the Northwerstern BAV program, I figured now that I am getting older it would be to my advantage to have a support system of doctors that could handle anything that might happen. I NEVER expected to leave after seeing them only a second time and have them tell me I needed to plan for surgery. I AM TERRIFIED. I feel like I can't breathe, I have been crying for two days. My grandmother lived to 82 never needing any procedures for her valve, I had every expectation of the same. There are so many unknowns, so many "ifs", this is SO out of my control.. I have severe anxiety but can't take medications because I am so sensitive to side effects, I am dreading the months of panic I have to endure. Welcome to my pity party, I assume once the shock wears off I will feel better, but for now I am devastated. I feel like such a whiner, but I needed to get that out.