Daneen's Journal

Hi Heart Valve Warriors!

It's been a bit and wondering how everyone is doing. I'm still tickin', and still working full time as a 3rd grade teacher.

My first year valve-aversary was 4-22-25 and so I’m rounding the bend toward my 2nd year valve-aversary.

It seems that doctors are definitely a new normal. The mitral valve has worsened since the surgery, and wish they would have replaced it at the same time as my aortic valve but guess it was too risky to replace both if not necessary. Many times the mitral valve will improve after AVR surgery. In my case it worsened instead. Hopefully, it can be managed until I need my aortic valve replaced again down the road.

Also, my mom just passed in May and we are making a lot of family changes. We are selling our house and my dad's house simultaneously, in order to combine households moving forward together as one family unit. Life has been stressful, while unifying.

Just know I've been thinking about all of the patients, past and present, and hope everyone is doing well! Wishing you all a happy and healthy holiday season,

Daneen

I just celebrated my 1 year “valve-a-versary” on 4/22/25. My aorta, root, and aortic valve were replaced. I am now working out 3 times per week at EŌS gym and slowly building back my stamina, core, and strength. Finally free from side effects post surgery and afib (fingers crossed).

Now, I find my mitral valve has worsened to moderate regurgitation from mild regurgitation, most likely due to the surgery. They were going to replace the mitral valve if it needed to be replaced. However, I wish they would have anticipated it worsening after the surgery due to the increased flow from my aortic valve. Anyway, they said it could be managed for a long time with meds.

I am very grateful for the technology and the skilled hands of the surgeons and nurses at Banner Heart Hospital. Dr. Michael Maxwell is a fantastic surgeon. It’s amazing the miracles that are performed everyday!❤️

It’s been a really long time since I’ve been on the site. I missed you guys. It’s been a busy school year and holiday season trying to adjust to normal, everyday life.

I am now 9 mos. post aortic root, valve, and aneurysm surgery. I’ve struggled to have any leftover energy after taking care of the necessary responsibilities of being a full time elementary school teacher, wife, daughter, mom, and memaw. Lots of shoes to fill!

I am monitoring myself daily on the Kardia Mobil App., after a short bout with afib after having the flu in December. I’m back on aspirin after pinpointing my vertigo to eliquis! Finally found the culprit! Feeling much better being off that med, but having to monitor my heart rhythm daily since I’m not on an official blood thinner anymore.

I joined a gym and did my first workout class with 2 1/2 pound weights, lol, on Tuesday. Today, I took the day off due to increased pain in my shoulders and neck. I think I may have overdone it. I feel like 10 mos. later I should be able to lift such small weights, do everyday household chores without feeling so much soreness, burning, and aching in my shoulders, chest, and neck. Wondering if anyone else is experiencing symptoms like these this far out after surgery?

Hope life is treating you well!

4 months post surgery! I’ve been off amiodarone for a couple weeks now. In September I wear the heart monitor for a month and hopefully no afib so they can remove the eliquis and metoprolol.

Still have a few more weeks of cardiac rehab and feeling stronger each day. at work, being a 3rd grade teacher is a very active job with a lot of walking outside at an outdoor school . By outdoor I mean each building is separate with outdoor walkways. It is not contained within one building. This way it costs less to air condition less space. In 100 plus temps I guess that’s what many schools are like in Arizona.

So, needless to say by the end of the day I have close to 10,000 steps before I even go to rehab. Waiting for the cooler temps! I’m sleeping 9-10 hours each night and my chest is sore when I do a lot of lifting, but feel pretty good overall. It’s hard to do anything extra though! I’m sure that will improve.

Still have vertigo about 1-2 times per week but mostly milder episodes. I am out of the one magnesium and D3 and I think I’m noticing more occurrences since I ran out. I will restock and see.

Anyway, I think about all of my heart valve warrior friends daily and praying too! Hoping everyone is doing well!🙏🏼 

I just completed my first full week back at school teaching! My class seems pretty wonderful at this point.

I just had my 3 month checkup with my cardiologist on Friday. I have been having crazy heavy menstrual cycles since the surgery and of course just put it together with the eliquis I’ve been taking since being in the hospital and developing afib. She confirmed that yes, eliquis is the culprit. She asked me to hang in there until I can get the amiodarone out of my system and wear the heart monitor for 30 days to see if I’m having afib or not.

It wasn’t such a big deal until I went back to school. So, looks like about 3 more months I will have to deal with the heavy cycles. It ends up being at least two weeks! She said to make sure I eat high iron foods since I’m now slightly anemic as a result of the heavy bleeding. Also, my vertigo seems to be a bit more frequent due to the anemia.

My doctor also said if I do end up developing afib again there will be a different blood thinner she would put me on anyway. Fingers crossed for no afib as I am just now going off of amiodarone.

Ya think “Oh! My open heart surgery is over. Now all will be better.” You don’t think of all of the other stupid complications that could happen afterward.

Onward and upward! My heart is doing well so that is the main thing!👍🏽❤️🙏🏼

I Just finished my 2nd full day with kiddos. I have a great class so far. Fingers crossed! Last year I had the worst class. Even with the kids being pretty easy at this point, I have been going to sleep early. Last night I slept 10 1/2 hours and could have slept longer. I think I will sleep as long as I can tonight! Going in to work now to work on things for the week to come!

Neurologist update- I went to my neurology appointment and he said he is going to monitor my aneurysm yearly with MRA’s. Too small to do anything about at this point.

I also need to see a nephrologist (kidney specialist) because my kidneys are functioning at a lower rate than normal, probably due to high BP, past kidney infections, and a lifetime of diuretics.

Last, ha put me on a high cholesterol med. I knew that was coming, lol. They’ve been talking about that for about 10 years and finally at that point. So, after all of that I guess I’m mostly good! At least it’s nothing life shattering!

The vestibular migraines are not due to inner ear or any blockages, disease or stroke. So, he says it’s an anomaly and something in my vestibular area that causes the vertigo. He doesn’t want to add another med at this time and since the therapy has helped and the episodes have been so infrequent he’s just letting things be. I still think something was disturbed or triggered with the surgery, but who knows for sure?

At least things are evening out and starting to normalize. I think the supplements I’ve been on for over a month now have also helped a lot!

Back at work as of yesterday and pacing myself for sure! My chest was sore last night from moving and organizing miscellaneous things in my classroom. Bending and twisting in new positions has been interesting!😵‍💫😆💪🏽🤨

3 months post surgery on Monday, April 22nd! I'm doing well with cardiac rehab and vestibular therapy for my vestibular migraines. On Sunday I did have my first big vertigo episode since being at my dad's over a month ago. I was dehydrated I think from doing strenuous chores and sweating a lot. I have fewer auras as well.

The neurologist will review my MRA and bloodwork he ordered on 7/25. I did review the MRA myself and it did reveal a small aneurysm in my brain, and the bloodwork showed inflammation. We will see what he says.

Im preparing my classroom and my first official day back to work is 7/26. Kids don't start until 8/1 so I will be able to ease into things. I know when school starts I will be going to bed early every night!

I'm praying for everyone and their recovery process, and hoping everyone can return to their own level of normalcy and eventually a higher level than ever!

10 weeks post operation yesterday! It will be exactly 3 months when I return to prep my class on the 22nd of July.

No vertigo since June 15th. Hoping the new supplements are working or that my body reset to normal since the vestibular therapy. My MRA is July 8th, I meet with the surgeon on the 11th, and meet back with the neurologist to review the MRA on July 25th.

Even though I don’t have my stamina built up yet, I have more energy than I did before surgery, I don’t huff and puff when doing activities, and I cool down super quick after any activity. My heart rate does not spike and returns to the 70’s after exercise and 60’s at rest.

My chest still gets sore but I’m doing some conditioning stretching to help the core, arms, shoulders, back, and chest muscles. That will take a while I’m sure.

We’re headed up to the mountains 🏔️ to 7,000 ft. elevation to spend July 4th weekend at our friends’ cabin in the woods. I’m looking forward to some light hiking. There are a lot of hills so will need to take it slow. Hiking is one of the activities I really miss.

In case you are wondering the difference between an MRI and an MRA there is a link below. I had never heard of an MRA before. https://my.clevelandclinic.org/health/diagnostics/24024-mra

Happy Thursday! 9 weeks, 3 days since surgery. I saw the neurologist this morning. He said I have a history consistent with small vessel disease but it is controlled with maintaining BP, cholesterol, and small dose of blood thinner due to my heart condition. So, he is not concerned as long as those things are controlled.

He said no MS because those symptoms last 24+ hrs. He ordered an MRA that shows blood flow from the neck through the brain to look for any blockages, aneurysm,  or inflammation. He’s also ordering bloodwork to rule out vasculitis. 

He agrees it’s most likely vestibular migraines and peripheral vertigo. He wants me to stop the meclizine as it’s normally a short term med. I will continue the supplements, though. If all is normal and I have further vertigo, he will order inner ear tests.  

Moving forward! I guess we are ruling out things one at a time, lol.  Good thing I met my deductible and out of pocket! 🤔😵‍💫🤯🤪

My cardiologist called yesterday and they are sending me to a neurologist based on the MRI findings. They did confirm no strokes but there were some other findings that could or could not be concerning. Apparently I have numerous very mild WMH (white matter hyperintensities). The causes could be migraines or other vascular headaches, MS, CVD, vasculitis, stroke, brain inflammation or infection, or high BP.

I had meningitis about 20 years ago, had high BP, and of course migraines/vertigo. Hoping for those causes. These spots can predispose a person for dementia and strokes in the future. I'm supposed to have an appt. early this week. It will be good to hopefully have a reason for the migraines/aura/vertigo I've been experiencing and get treatment.

8 weeks, 4 days post op…. Of course I have a migraine headache like I had pre surgery! Fun times! It’s been awhile since I’ve had one of these. I’ve just been experiencing vertigo and visual/ aura symptoms without my typical one sided headache with eye and facial tingling. 

My MRI showed no strokes so that is great! However, There are things on the test that cause vascular headaches which include migraines. At my vestibular therapy session they said I most likely have vestibular migraines after they did their evaluation. They sent me home with homework and I do these eye-head exercises to re habituate my vestibular system. Well, the next day after the homework, a regular migraine and a short case of vertigo came to visit. I learned that vestibular migraines and other migraines are related and types of vascular headaches.

After some research, I ordered some supplements that are supposed to help with both kinds of migraines. Two types of magnesium, riboflavin aka B2, coq10, and D3 are supposed to help and even with brain fog, memory, and mental clarity in general.

https://www.youtube.com/watch?v=vxwFHw_EGzk

8 weeks post surgery on Monday!

Sometimes I forget I had surgery because I feel so great. Then, suddenly the tiredness hits and my chest gets sore and I remember. Oh yeah, I did get open heart surgery!

I have my first full 3 day week of rehab this coming week. My first real day went well but was too easy so they are upping the exercises to start Monday.

I am hoping to be free of vertigo by the time I go back to work! I should hear from my cardiologist this week regarding my MRI. Regardless, I start vestibular therapy also on Monday morning.

I am down 18 pounds from my pre-surgery weight and am released to go back to work without restrictions on July 22nd (exactly 3 months since surgery). However, a lot of lifting, pushing, and pulling will be needed to set up my classroom and move furniture around. My surgeon said his usual, "If it hurts, don't do it! " So if it is too much I'll enlist the help of my husband.

It’s been 7 1/2 weeks since my heart operation. I saw the surgeon today and found out I indeed had most of my ascending aorta replaced along with my aortic root and valve. My surgery was called a biological Bentall procedure- Figure B. It is nice knowing what I had done so I can picture what my new heart looks like inside! I am cleared to report back to work as early as 7/22 if I wanted. However our contract start date is 7/26.

7 weeks 2 days since surgery and started my 1st day in cardiac rehab at Banner Heart Hospital. All went great, easy, great BP, and no afib! 🤩

However…. In the restroom afterward I had vertigo! I hadn’t had it for 2 days and was so hopeful. Ugh! I Waited til it passed and the sweating stopped, and drove myself home with no problem. MRI tomorrow and vestibular therapy on Tuesday. 👍🏽

So, almost 7 weeks post surgery and my husband wanted to take my new heart on a “test run” up north to the high altitude. All went well and only had a partial vertigo episode when we were back to low elevation.

This photo is so funny because it probably was not the best place to stand with the possibility of a vertigo episode happening at any moment. My husband jokingly yelled, Here’s my chance!”😆🫣

Almost 7 weeks post surgery- Next week will be a busy week. I'm starting cardiac rehab, seeing my surgeon for my second post op appt., getting an MRI, and starting vestibular therapy for my vertigo. Time to get busy….Let’s go!

Just got back from seeing Dr. Chava, my cardiologist. She has ruled out medications and has ordered an MRI of my brain to look for any strokes, problems with the brain, or inner ear that could be responsible for the vertigo. Since I only have episodes when I change head or eye positions and not upon standing up, she thinks it’s positional not blood pressure related. Dr. Chava also ordered the vestibular therapy like my primary doctor. Also, she said to continue with the meclizine 3x per day. We shall see if we can solve this mystery! Stay tuned! 😆

Sooo I had the worst vertigo of all yesterday while visiting my parents. Luckily my dad was in the kitchen and it happened as I gave him a hug. Well, no driving until I hear back from the cardiologist. Looks like I may be seeing an ENT doctor.  I think my inner ear must be messed up because I have exhausted all of the other reasons.   ¡No me gusta!🤨

6 weeks post surgery!

I’m doing well! I’m still walking 7,000 steps on most days when I'm not doing a lot. I’m making some meals, driving, going on short shopping trips, and out to eat or meeting friends. I’m still resting a lot as the chest is still sore after a lot of activity.

I still have mild bouts of vertigo and ocular migraines every day. I went in for a follow up with my primary doctor and am continuing the meclizine 2x per day instead of 1x. She referred me for vestibular therapy. 

My lungs are clear but she still wants an xray.

My new glasses and contacts prescription is much better.

I follow up again with the surgeon on 6/11! I'll have him check the bumps along my incision. They are most likely the wires under the skin. Also the sternum is clicking a tiny bit. I am still sleeping on my back to help with that. But a lot of transfer of soreness to my back and shoulders. All is good though. Just part of the process.

I am starting rehab on 6/12.

I’m down 15 pounds total so far and eating much less and smaller portions. Also trying for daily regularity rather than every 3 days, lol (TMI). So, I'm hoping to continue this and lose another 25 or so!

Onward And Upward!

5 weeks post surgery yesterday- We had family over for dinner Sunday, and took our 4 and 2 yr old grandkids on a four hour excursion yesterday. Let's just say my dog, Harley represents my current activity level. 🐢

Im walking my dog each morning around the block, and getting 7,000 steps (approx. 3 miles) daily. 🏃🏽‍♀️‍➡️

My scar is healing, tightening, and drying. My surgeon suggested vitamin e to keep it soft as it's healing. ❤️‍🩹

Other than a shower and doing laundry, I'm taking it easy today to recover from the past two days' activities, lol!

5 weeks tomorrow! Can’t believe it. Walked 3 miles! My husband and I went grocery shopping yesterday and I think my watch did not count my steps in the store because I was holding onto the cart. So I’m going to say it was definitely 7,000 + steps, lol!🏃🏽‍♀️‍➡️

Also down to 1 vertigo med in the morning. Hoping to stop it altogether in a couple days.

Got some vitamin e oil and silicone tape for my scar from Amazon. Keeping it soft is important according to my surgeon. He recommends vitamin e oil.

Onward and upward!😊🫶🏼👍🏼

30 days post surgery! I can't believe it's been a month! I find my body is requiring more sleep at night but no naps during the day. I'm going to up my steps to 6,000, and keep increasing every couple days. I think there is definitely a lot of internal healing going on even though physically I'm feeling about 70-75%.

The more active I am the more sleep my body needs. Still have a mild tightness in my chest but am at 2250 on the spirometer. Better each day! I have really changed my diet and am still losing weight. Down 14 pounds from my pre surgery weight , although I hit a plateau for about a week at 3 weeks post surgery.

It is still important to be very mindful of sodium. My cardiologist said to take an extra lasix if I gain 2 or more pounds overnight. I've only done that twice and it was definitely due to eating ham at breakfast one day, and a little popcorn at the movies the other day. I blame my salty husband. I should have had a separate bag, lol.

I've found the recovery process has really reset my food interests, reduced my portions, and has made me very sensitive to sodium. I would like to continue my eating habits and portions. I would like to lose another 20 pounds and go on with more healthful dietary habits overall.

I'm going to the eye doctor on Friday to get an exam so I can hopefully get a prescription for glasses and contacts that help my vision and vertigo, so I can stop the meclizine. I miss wearing contacts!

You are all doing amazing powering through your individual recoveries! It has really helped my recovery to read your stories. I am amazed how strong everyone is! Open heart surgery is a really big deal. I am proud of you!

Scar is healing but getting bumpy in areas as it tightens over the wires. I’m building stamina and am up to 5,000 steps at 4 weeks post surgery! Still taking a nap if I do a chore or go out of the house for a short excursion earlier in the day. I’m enjoying walking, doing things around the house and doing my inside laps. In the past 7 days I’ve had 3 minor vertigo episodes that came on and went within a minute or so with no lasting effects. I’m taking the meclizine 2x a day instead of 3x and overall is working wonders. Feeling about 70%.

Ok…. So NO side sleeping. OUCH! Woke up with shoulder and upper chest muscle pain. Surgeon said if it hurts don’t do it, lol! Well I won’t be side sleeping for awhile. 😂😬❤️‍🩹