Kelly's Journal

Has anyone else been through this? I have pre-existing anxiety and depression that resulted from a severe medical situation several years ago and expected some issues post-OHS
...BUT the biggest problem I am having is that this time, I feel like I went into surgery and came out a 100% different person. Good and bad. I can't figure out what exactly is different but at the same time, I don't feel like I did mentally pre-surgery. Obviously there are a lot of life-changes after this kind of operation, which I understand. However, my preferences in all areas of my life seem to be adjusted. Even my favorite color, which is very odd. Going to talk with my care team but was just curious if this has happened to anyone else???

Breaking out the happy dance. It took a lot of work but was totally worth it. Now to take this certificate at get it framed. Feels so good, can't be wrong!

Hang in there. Persevere when the odds seems against you. Keep fighting. You are worth it.

Big news... my INR came in low again(2.0) and I switch back to my GP next week. A bit distressing for me, as everyone knows this has been a struggle. Last week I spoke with the new INR nurse who said they want me to move from my 2.0 - 3.0 range up to a 2.5 minimum (the standard they prefer). Thank heavens for the small things because my amazing surgeon (who heard this his team how much I've been struggling) called my GP and spoke with him about my valve and together they came up with an acceptable new range for my On-x aortic that actually sounds feasible. Starting next week my goal is 1.7 - 2.3 Since I keep ringing in around 1.9, this is such fantastic news!

Keep fighting everyone. You never know when the clouds will break and you will get a bit of sunshine to make things a whole lot brighter. 😉

I did it. I made it to the 12 week mark! What's life like? I did a celebratory dance Thusday. No worries about being bumped in the chest, muscles and sternum should be nice and strong now. Scar looking good. Weight lifting is helping, but regaining my strength is slow. It will come back in time and I'm fortunate to have many people happy to help carry things until I get there :)

BP is good. Water and hydration are key. 5 more days of rehab. Woohoo!!! Then I'll continue my rehab from home. I have the equipment and there are plenty of beautiful walking trails in our area too. A little afraid to kayak still, but hey there is always next year if I'm not ready yet.

The INR issue is still bouncing but I feel more optimistic. I spoke with a gentleman has been on blood-thinners for years. He's like me and said he never has been consistent, but in the end you just have to let them do their job and keep going. Eat, enjoy life, and take the meds they tell you to. Solid advice. It really helped to speak with someone whose been dealing with this a lot longer than I and understands what it's like.

I get handed back to my gp for longterm management next week and already have a 6 month check up scheduled with my cardiologist. Things are coming together and I am excited to cut the cord and have some freedom back. My "new normal" may not be perfect, but it is mine. That in itself is exciting.

I'm back at work full-time. It's not bad. I pushed myself a little the other day and definitely felt it. Slow and steady. I feel great but feeling great and being fully healed are different things. Luckily, other than a few blisters and aches, no major problems. It hurt my pride more than my body.

So that's life. It continues on. For those who are still fighting day-to-day, keep fighting. There is a light at the end of the tunnel. It just takes some of us longer to see it.

Hi,
After my latest INR test, I decided I'm going to be taking a bit of break from the site. Emotionally this surgery and recovery have caused an upheaval in my life that I can't put into words. I value and appreciate the support here very much. The next few weeks though, until this is all straightened out, I need to focus on my life and try to come to terms with my "new normal".
Thank you all for your support and help. I really, really appreciate it and wish you the best on your own journey's.

Unt we meet again...
Kel

The INR battle continues. I suggested switching brands from the generic to the name-brand. Silence. Pain-wise there is nothing. Everything feels fine. Other than INR being a pain in the...
Point made. So I continue on, hoping a serious increase in meds will help. No dietary changes. Ever. Ugh. I am tired of this fight. At this point, if I wasn't so blasted afraid of Lovenox and a blood clot, serious thought would be given to a big, fresh, yummy veggie salad and a side of fresh berries with nuts and ice cream. Mmmm.... 🙃

I'm done. I don't want to even try anymore but I really don't have a choice. I made this lifetime commitment to a mechanical valve and at 37, I am hoping it lasts a long time. But today, my INR came in today at a 1.5.

I eat the same thing for breakfast and lunch, and have since my surgery. I didn't binge this week on a salad or even have a bite of an avocado. I am so sick of this struggle. I don't even want to try anymore. Everyone around me knows someone who is on blood thinners and "they don't have issues" like me. I am tired. I want to just be normal... whatever that is anymore. I literally eat exactly 120g of the same vegetables every day. I cut out soy, tea, spices, anything but water, read every label, and don't even both to touch an extra bite of food at night, even if I am hungry.

They upped my warrfrain two days a week and said they would rather adjust my medicine than my diet. This is after I told them if I cut anything else, all I will be eating is meat. No offense, but that thought is pretty disturbing to a former vegetarian! I need help but I have no clue where to even turn. Plus at the end of the month, I transfer back to my GP and primary network, then I get to start all over again with a new set of rules and nurses. They already told me that they prefer my INR be between a 2.5 to 3.5. I can't even manage a 2.0 to 3.0.

I thought this surgery through on so many levels. It's been hanging over me every day of my life. NEVER though did I imagine that eating food would become such a struggle. Sorry for the barrage of tears and frustration. I just feel like I was punched in the gut today one too many times. Here's to hoping that somehow things get better for all of us.

Healing well. Returned to work. Muscles ache... often. Rehab while still part-time, 5 days a week. Office feels claustrophobic. Too small compared to my new found "big"" energy. Discovering how much things have changed. How much I have changed. Long road ahead. A bit bumpy but worth it.

A lot of words have been used to define me during the pre/post-OHS experience. I personally like "warrior". Instead of an 8 week update, I thought I would ask my fellow warriors, what word defines you and your experience? Who are you? Who do you want to be?

Healthy, happy, healing to all.

Thought I'd be back to work by now. Next week. Rehab is going well. Bad for the bank account, but good for the soul. BP is acceptable. Rehab bumping from 2 to 5 days a week as of Monday. Trying to get in what we can before I return to work full-time. Can always adjust if needed, though since I rehab on treadmill at home too, fingers crossed all goes well. INR will continue to be what it will be.
Live in the moment everyone. The time goes by so fast.

Well the INR battle rages on. This time, too high (3.5). Guess that explains the nasty bruise on my hand. I was told to eat a good dose of leafy greens and avocado today, and I'm not going to lie about enjoying every bite! On another note... home test kits. Anyone have one and if so, how did you begin the process to purchase? I just found out my GP does not offer finger pokes. Not that I mind a vial draw, but needles are not something I jump for joy over either. :)

I have been released back to my cardiologist, discovered my low BP is "normal" for me, will be released back to work in 2 weeks for 1/2 time (full-time in a month), scheduled with rehab through Summer, had my first weight training session today, was told to ditch the compression stockings, and got the okay to remove my heart hugger for good when I return to work. Overall a lot of positives and seeing/feeling the progress being made. Halfway through the healing process and fingers crossed, it will only get better from here. Hang in there everyone.

Posting a little early this week but the news is too good not to share. 5.5 weeks in and finally my INR is stable! This has been such a battle for me. I know there will be challenges ahead but right now all I feel is pure bliss. May all of you who are battling any aspect of your health get to have one of these moments too!

Thank you everyone for the encouragement and support. I deeply appreciate it.

Yesterday was a bad day, as I mentioned in my prior post. Today, the sun is shinning and the world is a little brighter. I slept well and decided two things this morning.

First, I am rushing something that cannot be rushed. My body and my mind both need to be given the okay to head back to work before I even can begin to think about doing so. Until then, this is a stressor that I don't need to carry right now and it can/will be set aside.

Secondly, my fear of the unknown at work was hurting my health. So, I met with my boss briefly to discuss what has changed at work since I've been off, how I am doing now, and that this process is on-going. She was understanding and I left the conversation feeling confident that whatever happens moving forward, I am in control and will do what is best for me. I have a job if I want it, though it may be a little different just like me, due to restructuring. When/if/how i return though is a decision that can wait for a few weeks too.

So life continues on. There is a world full of joy, hope, and kindness. Sometimes we just have to walk through the darkness in order to find the light again.

I am frustrated, scared, worried, and unsure. My confidence is shaken. My body is healing but my BP is still too low. INR is a moving target (still) and HR high (rebound effect). I meet next week with the surgeon about returning to work, but am not sure I even want to go back to my job. Is it too much stress? Physically no, emotionally perhaps. This has been a rough week. I am trying to find the good. I am trying to hold onto hope. Today though, I am going to give myself permission to just let go and grieve. It's time to mourn the life that was, so I can fully accept the new life that is.
Tomorrow is a new day. May the sun shine brightly for all of us.

1st check-up with cardiologist. Smiles filled the room. I had forgotten with all the chaos of day-to-day what progress really looks like. Walked 3.5 miles at rehab yesterday and am now allowed to drive! HR still slightly up (rebound effect), anxiety is improved, stress is lower, BP is climbing (in a good way), INR is still a moving target... but I can take a deep breath, laugh, and smile without pain. I slept on my side for the first time (joy!) and have started cleaning the house as allowed. Self-care is at about 95%. No more shower bench for this gal!

The sun is out, I feel great, and it is going to be a beautiful day. Hang in there everyone. May you heal well as you continue on your journey also.

3 weeks post-op and I hit my first major speed-bump. They took me off BP meds last week, my heart rate went up, got kicked from cardio rehab Tuesday to get an EKG (no Afib) and I was told to call my GP about anxiety (pre-existing condition). I am currently digging the extra dose of anti- anxiety meds that my GP is skeptical will "fix" the issue. Cardio Rehab tomorrow. Not able to walk or focus, much less do anything else. Should be interesting trying to get me on a treadmill. Bonus, I feel no pain and the heart rate is currently down.

Thankfully still on vacation from work (no way I can drive like this) but must say this is not how I imagined my week going. One solution just brings another problem. I feel like it's a bandaid for whatever else is going on. Oh well... onward and upward. Keep up the good fight everyone. I'm going to nap some of this off ;)

My days blur together between medication, tests, breathing excersises, walking, and self-care. Lots of phone calls with the INR Clinic and the surgeon. Had my first checkup (stitches removed!) and started cardio rehab. BP is low (may need to come off BP meds) and still losing weight. My incision itches and the ticking is a little annoying at times. Sleeping well though, hungry, and in general it feels so good. Not everything is perfect, but it sure is a pretty view. Happy to say two weeks down and life is good.

When I started this journey, even I would not have imagined I would be home four days after my BAV replacement. The surgery was the 25th and I was sent home at 12:30 p.m. on the 29th.

The first few hours are a blur. I don't remember much about the surgery or recovery in the ICU, other than the anthesialogoist had difficulty getting started due to my small veins. I know I was in the ICU for 26 hours total before I was transferred to step down. A lot of that time I was fighting nausea, which were a result from the narcotics. I have been on Tylenol since, and am thankful for the change.

By the time I left, I was rolling along using the walker and feeling pretty upbeat. My appetite bounced back around the end of day 2/morning of day 3. I missed the cushioning beds right away that the ICU had, but the kind caring staff I met when I moved down the hall made up for it. Plus it was a lot quieter, meaning the bed may not have been as nice but the sleep was more restful.

My first chest tube came out on the 27th. The other two came out on the 28th. After that, I haven't had any real pain really and on April 28th, I felt able to really take my first deep breath in over a year.

Now I am home. When I opened the door and saw the get well soon/birthday balloons, there were tears. I had birthday cake with my family lastnight. Doctor's orders. Really.

Today, we had our first meeting with the INR nurse to get tests and nutrition help, scheduled the first follow-up appointment and set my first appointment for cardio rehab. It's a lot to track and I am glad we took time to prepare.

How does it feel? I don't know that there is a word that describes this experience. Everyone is surprised I bounced back so fast, including me. Youth was on my side and general good health, but even then you expect some things will go wrong. Maybe they still will, maybe they won't.

They called me the superstar patient. I haven't tried to move this along, but my body just kept hitting the marks anyway. It doesn't mean I don't have hurdles ahead. There will be plenty. Somehow though I got the mythical experience that they tell you can happen.
*Edit... we just got a phone call and will be following up with the surgeon's office tomorrow. A visitor stopped in very briefly, who unknowingly had strep. The mythical experience became our worst fear. However the past is past, now we must focus on the future and go forward from here*

To ask those out there waiting, I was scared. I am still scared. There is this great thing that fights off fear though, even when we doubt our bodies can handle it. This thing is called hope. Have hope.

Off to the hospital. Hard to believe it's already here. Excited, nervous, and filled with the feeling I made the best decisions I could for me. The road ahead my be rough for me, but I am thankful to have come so far already.

Best wishes and I will be back in about a week. Take care everyone.

I thought I had everything organized. I thought we were ready to go. This weekend has been a good reminder that even the best laid plans can go astray. I ended up spending 2.5 hours on the phone yesterday, dealing with a computer entry error at the prescription service that our insurnace requests we use. I was denying delivery of medications, which was causing me to be unable to pick up perscriptions at all. They blamed the pharmacy, and in the end it took way more patience than I was willing to give and a significant amount of blood pressure spikes to get their internal issue sorted out, but it is fixed. The problem is resolved. If fortune stays on my side, my spouse will have no problems with this matter following my surgery now.
I missed getting the oil changed in both cars. I only got in a total of two naps all weekend. I wish I felt more relaxed than I do. The laundry isnt ready. The dog still smells like dog. These are all minor issues now. In a week, we will have a whole new situation to adjust to. I will be a year older and my heart will be learning to beat "normally" for the first time ever.
I thought that this surgery would give me perspective on my life, especially post-surgery. I guess I never thought it would actually start three days before with a phone call to the pharmacy.

As I head into my last week at work for awhile, I am thankful to have a temp to train to help out while I am away. We didn't get everything done at the house I was hoping too, but the major items are checked off the list. The last piece is to finish packing. I am putting that off honestly, as reality is finally starting to sink in. We had an event yesterday, out of town and traveling in the middle of the blizzard. Luckily some of the family had hotel rooms with extra beds, so I was able to nap. I still have to decide who is coming and who is not. My spouse and I will discuss that more, as I want him to have support that day but not be overwhelmed. And the emotional cyclone has finally hit. Tears, anxiety, thankfulness, joy... it's a day-by-day approach at this point. The last task is to arrange pet care. We have our final consult tomorrow and a few tests... then I don't see anyone again until the day before the surgery. It is all feeling very real, a little scary, but overall very exciting to know in a few weeks we will be on the other side of this journey and into recovery. Best wishes to all.

Hi. Looking for anything helpful on Vitamin K food lists, recipes, etc. Lots of conflicting information on the web and having issues preparing food for post-op or letting family know how to help/what I can eat. Happy to take useful tips, favorite recipes, and more. My diet is pretty much made up of lots of greens and salads, which I am discovering will be a problem later. Any help appreciated.

Hi,
Looking forward and was wondering if anyone purchased an INR homes test/found it useful? Concerned about blood thinners on mechanical valve and diet consistency. Thanks in advance.

Pending any surprises, my BAV OHS sounds like it can be done locally. That is good news. Still no date set and taking everything in stride. Most difficult issue at this time is sleep realted. I am now using three pillows a night, stacked on top of eachother, which is allowing me to sleep. I wonder if a wedge pillow may be better? And if so, is there a particular one that anyone has had success with? Any feedback is greatly appreciated.

I made my follow-up appointment with my cardiologist. October 2nd. I hope discussing things with the doctor again and the follow-up Echo will help provide us with a baseline of some type to see how fast this situation is really progressing. Any information at this point is helpful because I have never felt more lost about what to do or who to turn to. From there then we decide who/when to speak with in regards to a surgeon. The one thing I am discovering is that there are no easy answers. I am preparing as best as I am able to, when I feel up to it. Reading, researching, and speaking with people who have been through surgery for tips on recovery has been helpful for me. I was feeling pretty optimistic about the surgery itself for awhile. The idea of feeling my heart beat "normally" for the first time in my life is scary and exciting. Then I discovered more about blood thinners. It is easy to say that topic now has me feeling a lot less enthusiastic. 😒 Overall though, increased fatigue aside, taking it one day at a time and hoping for the best.

P.S. One decision has been reached...our office is being redecorated to include a recliner. Small steps for which I am thankful we have time to prepare.

I am frustrated, as my body feels at times like it us betraying me. Technically, my BAV is still moderate. They think I am having symptoms, which makes my doctor want to move sooner on surgery versus later. How do I know for sure though that I am? I've had this condition and symptoms my whole life. How do I separate fact from fiction? I feel lost and don't know what to do or who to speak with. I feel like I am hyper-aware and/or panicking. But when I climb the stairs at work, I do feel winded. There is pressure in my chest. I know I've been getting more fatigued. It's just all so confusing. I wish I knew how to find answers.