Carolyn's Heart Valve Journal

Those are the words that came out of my cardiologists mouth the last time I saw her in Dec. 2016. We had discussed many things that visit, most notably my newest cardiovascular diagnosis my enlarged aorta. Note that my doctor did not call it an aneurism. It wasn't that large before so it seems to be growing. After we discussed options I agreed to her plan to have it CT imaged every six months just to be on the safe side. We wouldn't have even known about it except for the original reason I was in to see her.

I had been experiencing shortness of breath. The first time it happened my family doctor sent me to the ER where they CT'd my chest. They gave me a breathing treatment and a prescription for an inhaler and sent me on my way. Well on that ct was a picture of my enlarged aorta. The inhaler they gave me worked for a time but my breathing only got better once I stopped taking aspirin. My cardiologist said it wasn't an allergy but that I shouldn't take it anymore. I've been taking a baby aspirin each day since my heart surgery in 2012. I was wondering if anyone else had experienced this problem?

She also gave me a letter on NTM infections related to heater cooler units used during open heart surgeries since 2012. She sent me for a special blood culture at a specific hospital to check for it. This is because I had recently experienced every symptom listed in that letter. I was feeling better by the time I took the culture so I am not too concerned about this topic for myself. However I felt the need to mention it because my cardiologist felt it was relevant. I just thought awareness was warranted since both the FDA and CDC have put out bulletins on the topic.

I am glad that I have this blog to post all these concerns on. I remember how much it helped me before and after my heart surgery. I will probably post again in 6 months when I hear more about my aorta. I feel pretty well at the moment. Hope everyone else in HVJ land is too.

Carolyn Williams
AVR and PFO closure 9/25/2012

Hello There,

I'm pretty sure that it's been too long. I meant to post on here at my 1 year mark from my surgery. I've just been so blessed, living my life that it didn't occur to me to post. It is thanks to the wonderful work of KU Med. and Dr. Muehlebach that I'm able to live such a full life now. This year has been so wonderful. I've gotten engaged, and promoted at work. I enjoy rock climbing and jogging. I even was able to put up the Christmas tree this year. I definitely didn't have the energy to do that before.

I mostly wanted to post to resolve the Cardiac Depression post I put up in February. It was pretty easy to slip into depression after surgery. However, I made an effort to be social, go out on my errands, get more sleep and get sun light. My depression didn't really take that much time to fix once I put my mind to it. So if you feel sad after your surgery and it went perfectly well don't be surprised and don't worry it too will pass.

Carolyn
AVR Sept. 25th, 2013

Hey there surgery survivors. I haven't posted in a while and now I'd like to post about cardiac depression.

I think I have to admit to myself that I am experiencing a mild case of it. I am online now because I'm currently experiencing the sleep problems part of Depression. I wanted to ask anyone out there what worked for them I'm trying to take an active approach so it doesn't get severe.

I'm currently reading "The Depression Cure, The 6-step program to beat depression without Drugs."It is written by Dr. Stephen S. IlardI of KUMED (Yay KUMED!) It has some amazingly practical advice, some of which I already knew and have been implementing. For example I already exercise 30 minutes 3x per week to help my mood. However, I didn't know that Omega 3's have an anti-depressant effect. I'm already taking fish oil as a recommended by my cardiologist but turns out I should be taking 2 of my fish oil pills to get the recommended dosage to get anti-depressant effects. I also just ordered one of those SAD light therapy boxes as recommended per the book. It should ship to me by Friday.

Any of my followers have experience with this recovery depression issue? What worked for you?

Thanks,
AVR, PFO Closure 9/25/2012,
Carolyn

The world of a recovering OHS patient is not an interesting one. So little has transpired since my last entry that I've had nothing to report. The most exciting thing that I've done since Oct. 16th is help make dinner for the first time. Oh well, slow and steady wins the race right?

To make up for that I'm going to answer the question "When do u come back to work?" Well, the earliest I could come back is Nov. 9th. I don't see the surgeon until the eighth so I'll just have to wait patiently for the work release. I manage to fill my days, although, I'm not sure with what.

I'm thrilled to be doing so well,
Carolyn Stone
AVR/PFO Closure 9/25/2012

To conclude my last journal entry I'd just like to say that I'm not going to that eye doctor again. She told me to be there between 9:30 and 9:45. Then the nurses don't take me back until 10:10 AM (40 minutes I've been there by now). You want to know why they hadn't taken me back yet? It's because she wasn't there until 10:10. I overheard one nurse ask the other "Did Dr. ***** get in yet?" and the other responds "Yeah, I think I just heard her." They do their intake and then I don't get to see the Dr. until ten minutes later. Uggh. In the mean time get to enjoy the hard backed eye doctors chair while I wait. Then she does my prescription; thankfully that only takes 5 minutes.She gives me some eye drops, says they'll take 20 minutes to take effect and then she's not there until 11 AM to check whatever she needs to check after dilating my eyes. And she apologizes for the wait. Whatever, she was this late the last time I saw her. When I go to check the scheduler says that she wants to see me back in a week and guess what she only works 3 days a week. No wonder she's always backed up. That was so ridiculous.

On a happier note by the end of the week we did finally have a working microwave installed. Yay!

I've started my cardiac rehab and the only thing that surprises me about it is how much I feel the stretches that didn't used to affect me at all. It's amazing what happens when you are resting for 2 weeks and not using your upper torso very much.

I'm happy to report that I almost had a normal Saturday. I went the grocery store with mom, although I didn't do any of the lifting. Then Jeff, Steph, Cory and I went to Izumi's for sushi and it was fabulous. After we even enjoyed some FroYo (Frozen Yogurt). I had a lot of fun.

Unfortunately saturday's storm brought in some allergens. I couldn't stop sneezing that evening. It was really painful. I ended up not wanting to move at all Sunday. Of course I did still go downstairs and I even got my walk in. I felt better by Monday but then Monday night I started coughing and it hurt all over again. I'm still dealing with some sneezing today. Thinking of switching to Zyrtec again because allegra just isn't cutting it. Admittedly no one said this process wouldn't hurt though.

I managed to drive myself to see Dr. Dew (my cardiologist) and she said that I was now a boring healthy patient who no longer had an interesting murmer. Yay! She also took me off the simvastatin that KU put me on. Good riddance. I don't have high cholesterol and Aspirin is more effective at preventing heart attacks anyway.

Today puts me at three weeks since my surgery. It feels pretty good being independent again but I'm glad I have all the support that I do. Hope everyone else is doing well.

AVR/PFO Closure 09/25/2012
Carolyn

I've had a very busy end to work week. Saw my primary care physician on Wednesday and she said I was recovering intelligently. Especially since I hadn't attempted to use up all my energy and hit the "wall".
She told me to see an eye doctor about the floaters I've been seeing since the surgery.
Then later Wednesday I had my physical assessment at Cardiac Rehab. They said I was strong and doing well. Unfortunately I learned I'd been doing the incentive spirometer wrong. I'm supposed to go slowly to open my lungs.
I also received some more flowers. Jen delivered them but they're from my group of friends. I feel very loved :) Then to make it even better Ross and Reba stopped by later.
Then Thurs I drove my car for the first time. Good way to celebrate two weeks even if it is 2 days late. Felt very odd but I could do it! Later Mary stopped by with some fettucine alfredo. Thanks Mary!

Now I'm at the eye doctor and I'm pretty exhausted. She (the doctor) is late again.
Hope everyone is doing well.

AVR/PFO Closure
9/25/2012
-Carolyn

I've not much to report. I keep improving a little everyday. Each day I walk a little father. As of yesterday I've reached 2300 ml on my inspired volume of my breathing treatments. When I first got out of surgery I couldn't inhale more than 500ml.
The parents, Jeff, and I went out to dinner for the first time on Saturday. We went to red lobster. Very yummy. Jeff drove us in his Lincoln, so we were able to enjoy the heated seats.
Thanks to my friends Mandy and Andy for dropping by tonight. We enjoyed your visit.
Oh, Sears came by yesyerday and installed the new microwave and what do you know? The new one is defective. Most of the buttons don't work it didn't heat and the interior light doesn't turn off.

Well I hope everyone is doing well. If ur waiting for surgery the others of HVJ are right. The hardest part is the waiting.

AVR/PFO Closure 9/25/2012
Carolyn

Well that posted before i was done. All I was going to say is that it was pretty cold and I'm not sure how many more i'll do at this temp. Also I've had a new companion helping me recover. See my pictures to see the kitten.

AVR/PFO Closure
9/25/12
Carolyn

Wednesday night my friend Laura and my BF Jeff stopped by. We laughed so much it felt like a party.

I didn't post about it yesterday because I went for my first outing. Mom took to Cardiac Rehab Orientation and tour. To celebrate I wore jeans for the first time and they fit too! Yay I lost all the fluid from the surgery. I ate out for the first time as well. Mom and I went to Unforked for lunch. Latsr Mary came by with cookies and another card from my coworkers. Double yum and thanks. I was exhauseted from the outing and went to bed early
Today I went for another walk to end of the block today. It w

Well I've had a very good day today. I made it upstairs for the first time today and it felt good to nap in a bed. I also walked to the corner of the street and back. Mom had a successful morning too. After the Sears repairman came by and told her the microwave would cost three hundred to fix she decided to get a new one. She managed to get Sears to sell her one over the phone even though they said they couldn't without a Sears card. She paid with her visa teehee. Well I'm exhausted now and am going to take a nap.

Aortic Valve Replacement/PFO Closure 9/25/2012
Carolyn

The 26th thru the 29th: The worst pain I had was in the ICU The first night and morning. Most of that was the chest tubes. It just hurts to have tubes sticking out of you. I wad very relieved to have them removed. Once I got out of the ICU they changed my pain meds because I was still in a lot of pain. When they listened to my heart they said I had a classic rub murmer. I referred to this as feeling crunchy. It was explained to me that the pain was coming from my new cow valve. In young skinny people they said the heart gets inflamed around the new valve. The tramadol they gave me helped resolve this. The next challenge I had was ten pounds of fluid retention bit KU helped me by giving me LASICS (sp?) It's a heavy duty diuretic. Overall my stay at KU was phenomenal. My surgeon was wicked fast and my recovery complication free.

I've had almost no incision pain and some of the incision scab has already fallen off. I only really have pain when I cough, or sneeze, or yawn. I have had some residual nausea which had been hard to control but after I was sick last night (oh my did that hurt my incision) Mom got ahold of Muehlebachs on call resident. He called right back and got me a prescription of zofran.

Thanks for all the support and the pretty flowers:) Text me if you want to visit. Or email me carolyn.a.st@gmail.com.
Carolyn

So I'm going to attempt to do a thorough update on what's happened thus far.

25th day of the surgery: I don't remember much except trying not to pass out when I checked in at seven thirty with my family I was trying desperately not to pass out. I was so hungry. I do not skip meals. In factfact you can ask Mary I don't skip the midafternoon snack well either. I was pale going into the operating room. You can read Jeffs earlier entries for a feel of how the rest of the day
went. I don't remember much of anything beyond that.

I got out of the hospital on saturday. I've been sleeping a lot since. It's both more difficult and less difficult than being in the hospital. It's nice to have a home cooked meal and the recliner is awesome. Hope to post soon.

Carolyn

7:09pm

Carolyn took her first walk and ate her first whole food meal!

She had mashed potatoes and gravy, and tilapia! Looked yummy.

I posted a picture of her walking the hall in photos.

EDIT: Actually the picture isn't up. Cell data signal is terrible in the hospital. I'll upload it from Carolyn's phone next time I am there after I connect to KUMed's Wi-Fi.

-Jeff

Carolyn is out of the ICU, chest tubes and most wires are gone. She is in room 8 of the progressive cardiothoracic surgery unit, visitors welcome. She looks great!!!!!

Mom

Carolyn has already been standing and took several steps, not one complaint, she is doing fantastic. !!!!
Written by her mom

Post-Op 2

Post-Op 1 - Looking great!

Jeff and Carolyn in Prep this morning

Carolyn is doing great in the ICU! They took the breathing tube out a little over an hour ago.

We have talked to her and she is tired but able to respond. Overall things have gone really smoothly so far!

Thanks for all the well wishes!

-Jeff

3:19pm

All done!!! Everything went great!! She is in the ICU now.

-Jeff

2:49pm

The new heart valve is in and she is doing good. They have to still close her PFO and finish some 'wiring' as they called it.

Also the photo I said I uploaded earlier from this morning is actually up now.

-Jeff

Carolyn in Prep

1:41pm

They just opened Carolyn's chest. Everything is ok so far.

-Jeff

Carolyn was brought back to the OR at 11:57am. It will still be another 30m to 1h before the surgery starts.

-Jeff

10:57am
Nothing new yet. We are still in the Prep waiting room. Just updating everyone!

-Jeff

She is excited, in good spirits and looking well. :-)

They are about to start the IV for the light sedative.

I posted a picture in photos of her in the Prep bed.

-Jeff

So I checked into KU this morning at 715 for pre-op testing. As of 11:10 AM I am officially done with that. :) My results from today's testing all turned out well. I am scheduled for check-in tomorrow at 7:15. My proceedure will start tomorrow around nine or ten and take four to five hours. I'll have Jeff post something then. I should be in the ICU all night.

I want to thank everyone for the support I've had thus far. I feel very lucky and very loved. As they say on HVJ I'll see u on the other side of the mountain.
-Carolyn

So I'm 18.2 days out.

It feels kind of weird. I'm really excited. I'm rarely very scared. Maybe it's because I had a 12 hour back surgery when I was twelve. Maybe its because I don't feel like myself and I am ready to feel so much better. Maybe it's because my Cardiologist was so confident. She said I was young and healthy and I would feel like a different women. I hope that's true. I think it's true especially since I'm doing the surgery before my heart has become enlarged and damaged from the leaky aortic valve.

Went to dinner with Jeff and his Dad at Jack Stack today. His dad hasn't visited since over a year ago. It was funny seeing them together. They kept giving each other a hard time. They're so similar it's amazing.

I was pretty exhausted after dinner and I called it a night. I've been surfing HVJ since. I really enjoy talking to all you other heart valve patients on HVJ.

I'm just putting one foot in front of the other,
Carolyn

I've been reading more of "The patients guide to heart valve surgery." I had no idea that I would a need a recliner or a post op bra for that matter. I'm also happy to say that Dr. Muehlebach's admin Lisa called me today and we scheduled for September 25th at the University of Kansas Hospital in Kansas City, KS.

I feel much better now that I have a date set. I feel like I have something to work for.

I would like to be more positive than my last entry so I would like to say that even though I was confused and delayed my surgery for 1.5 years, I am happy to report that I've lost 20 pounds since March. Yay! I no longer eat wheat gluten based on "Wheat Belly" by Dr. William Davis a cardiologist. I have no temptation to go back to the wheat lifestyle.

So I am healthier than I've been a long time and I am very glad for that.

I've spoken with some of you about what you can do to help and I'd like people to give blood.

Can I walk up stairs post op. Do any of you survivors know?

Thanks for the support lovelies!
Carolyn

Another View of the Valves

My Aortic Valve leaking onto my Mitral V

I've continued seeing my new nice cardiologist and am happy to not think about my heart problem until one day at the Manufacturing plant I engineer at. In August 2012 I'm taking a walk with my 65 year old mentor and I have to stop. I feel weak, short of breath and I have to turn around. I am 25 years old. I ran a 5k 3 months ago. This is a problem.

I decided I need a third opinion. I see a cardiologist at University of Kansas Hospital. She recommends surgery as well and soon given my symptoms. I get another echo and meet the KU Surgeon. He is amazing. I learn something that I wish I'd understood 1.5 years ago when they told me I needed surgery the first time. My leaking aortic valve is hitting my mitral valve forcing it partially shut when blood should be coming in from my lungs.

I'm a little angry at Cleveland Clinic for not operating because I was woman and maybe they would operate now that I'm worse but I can't change the past so I'm going to start planning for my surgery.

When should I have it? He said I could have it two weeks from now, which is what I would prefer, or two months from now. He would recommend sooner rather than later.

I've spoken to a lot of people about this surgeon Dr. Gregory Muelhebach and he seems very accomplished.

What song should I have playing when I go into the operating room?

I want to get my hair cut and my nails done before I operate. Anyone want to go with me?

-Carolyn

So Dec 2010 I'm at the doctors office with chest pain. My doc originally tells me that I have anxiety that my vitals are fine, that my chest x-ray is clear etc etc. She sends me home with some xanax. Which I take and has no effect. I'm back two weeks later with the same complaint chest pain.

This time she notices something different. I have a murmer. She tells me I'll need to see a cardiologist but it's probably nothing. I ask her to take me off the xanax and she puts me on a beta blocker instead, which actually works quite well.

Then I meet what Mr. Adam Pick terms "Mr. Bad Bedside Manner."

The cardiologist is quite concerned initially during our visit and insists that we get in to see the echocardiographer right now for an echo. He sees me right after the echo and tells me quite amazed "I've never seen one of these before. This is so cool you have a "Quadricuspid Aortic Heart Valve." Which I later learn is very rare (.008% of the population) and most people only have 3 cusps on the aortic valve see my photos for reference. He doesn't really take the time to explain it to me just schedules another proceedure (Transesophogial-echocardiogram). After the TEE he tells me that my heart valve is beautiful and he wants to write a paper and that there is no way my leakage (regurgitation is the science term for it) is causing my chest pain.

So I go back to my family physician and she sends me to a allergist to check my lung function and a neurologist. And in both cases I turn out normal. On the spirometry test (lung function test) test better then I normally test at 80% of the average lung capacity. If you know anything about my allergies I normally hover around 50% of the average lung capacity. But the beta blocker seems to be working so I ignore the chest pain.

I have a 6 month follow up with Mr. Bad Bedside manner and I tell him how My fam physician couldn't find anything. This time he is pretty rude to me about how my heart could not be causing it so I make an appointment with a new cardiologist for my next six month follow up.

She is totally different. She does another echo and says that not only has my regurgitation gotten worse (I've gone from mild-moderate to moderate-severe), but my leak from my aortic valve is hitting my mitral valve. She's worried that this could cause damage and that I should schedule surgery before I lose function of both valves.

Mom, Dad and I meet the surgeon that my new helpful cardiologist recommends he seems very informative and we schedule the surgery for Feb 2011 (which some of you may remember).

Next mom and I fly to the Cleveland Clinic this is still Feb 2011. We get a second opinion. Unfortunately for me the clinic won't operate unless my aortic insufficiency or my symptoms worsen but they have no idea why I'm having chest pain. They won't operate because I am and I quote "of young child bearing age and maybe I could have a family before I need the operation." Which they don't argue I will need possibly soon.

Having this conflicting advice of course scares the crap out of me. I cancel the surgery I had scheduled locally. I am in limbo for the next year and half. Happily running five K's and living my life, with the occasional chest pain. And trying not to think about my heart valve problem.