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Chrissy's Heart Valve Journal

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Chrissy Fowler

Knightdale, North Carolina,

United States

 

My Diagnosis

Mitral Regurgitation

 

 

 

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One year later - still recovering

May 19, 2013

June 8th will be one year. All in all I am doing rather well. I am still getting used to my "new normal".

Ever since day zero I have had numbness and loss of feeling in my right leg from the groin where the cardiopulmonary bypass machine was attached down to my knee. The upper inner portion of my right leg seems to have neuropathy.

Also gradually my trapezius muscles seem to be more and more painful, not sure if it is related. I started physical therapy for neck and back pain about two months ago. Until tonight I never thought they could be related but now I am not so sure. I am 37 years old but I often feel like my body is at least 50 years older.

If anyone has similar experiences please share. Hope you are all doing well. Stay strong.

Another question

July 24, 2012

I know every one has a different recovery. What was your return to work like? How long were you out and what was work like once you returned? Did you work a little at first etc. Just getting a feel of what it has been like for others.

Oh yeah couple questions

July 24, 2012

I was wondering did anyone else notice vision changes after surgery? Also the last few days my sternotimy incision is the most tender it has been. I am thinking the muscles and nerves are more reconnected now!? I have cut back quite a bit on meds in the past two weeks maybe that is related.

I still can't sleep on my left side without pain meds. I turned onto my stomach during sleep which quickly made me wake up. It was uncomfortable. I am usually a tummy sleeper but since June 8th have been sleeping on my right side. Any one else have thoughts about sleeping patterns & habits after surgery?

Ok I think that is it for now. :o)

Into my 6th week of recovery

July 24, 2012

What an experience! I am feeling so much better than I was 6 weeks ago but I still have more recovering to do. My pain is not gone but is better. I had pain issues before so I am sure that is exacerbating the situation. I am tired as I get back to "real life" but not the soul sucking tired I had before my heart was repaired.

I had to wear a heart monitor for a week after I stopped my amiodarone meds. I still take my vitals daily and I was (am) having irregular heart beats. In a week and a half I will see my Cardiologist again to review the results of the heart monitor and to make any needed medication adjustments or additions.

The last few days my blood pressure has been high so that is concerning. I am logging everything so I will review that with my doctor.

I miss working and the people I work with but I am nervous and hesitant to return in 2 weeks. (that was my estimated return date). I get so physically tired from the smallest things and I don't know how a full shift will affect me. I am not sure I can handle even part time right now. I am thinking I can return to work slowly but I guess I will discuss this with my doctor and my employer.

So that is my status in a nutshell. Hope everyone else is doing well. <3
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My Other "Journal"

July 7, 2012

http://sassychrissy.livejournal.com/

It's Africa Hot here and I can't go in the pool.

July 7, 2012

Although tomorrow marks exactly a month since my surgery it feels a lot longer than that. My incisions are healing ok I guess. My groin incision seems to be taking the longest. I am hoping I will be allowed and able to put my bathing suit on and go in the pool for a couple minutes, get out, sit in a chair and repeat. My kids summer break is short and the backyard pool is a favorite past time. I intend on wearing sun block and drinking ample amounts of water. Does any one have any thoughts about this?

Medic Alert ID

June 30, 2012

I am shopping for a medic alert ID bracelet. Any thoughts or advice?

Recovery ugh!

June 29, 2012

So it's been three weeks since my surgery and I've been home for 16 days. Breathing doesn't hurt too much anymore but everything else does. Maybe I should use pain meds again. My leg hurts so bad and is numb at the same time. That incision is healing slower than my mini sternotimy. My chest ribs and back hurt the worst today since I left the hospital.

So tired and weak and I just want to feel like me again. I don't like feeling this helpless. I swear my brain is slower now. Don't get me wrong I'm thankful and happy to be alive. I just didn't expect recovery to be this bad or take so long. Silly Me!

To stay or to Go THAT is the question.

June 12, 2012

The goal is for me to be discharged tomorrow as long as I'm off this oxygen. We shall see!

Pleasure & Pain

June 12, 2012

Yeah there is no way too articulate this pain. I'm do glad we seem to have it at a tolerable level. I got really sad that no one from my family was coming down to see me😭 but crying hurt physically do I nipped that in the bud. My kids and hubby visited Sunday and Monday. I was so happy to have them gathered around me. Jason bought me flowers 🌻 which never happens.

Recovery road

June 12, 2012

I underestimated the aftermath of this surgery, I was barley in the CTRU ( ICU ). I was told it was a challenge for them to sedate me.once once I was a wake I noticed all of the lines wires and tubes that were attached to me.
I was intubated still had that tube down my throat, also had a central line in the side of my neck. I had two very large chest tubes. I had two regular IV catheters in the crook of my left elbow and an arterial catheter in my right wrist.

By Saturday afternoon I was preparing to go to my private step down room. The AC was broken and after a full day & evening just went and bought me a fan which helped tremendously

Recovery Road Part Two

June 12, 2012

So I'm in my room and the AC was broken I asked if they could bring me a fan but no one ever did. Jason my husband bought a fan for the room and boy did that help!

At some point my chest tubes were takin out and HOLY shit I would rather go through another labor & delivery than ever feel that way again. The foil catheter. And the artery catheter were also taken out at some Point,
I was on oxygen and then I was told I was in A Fib do igot and still take those meds. The pain was unendurable finally a pain dr met with me and made a plan.

I came off the O2 on Sunday but not for long. I'm on it now bc the levels are too low with the Polsox. My blood sugar was / is at a low level so they giver insulin for now,

I ran low grade fevers since Sunday night!? My X-rays look good though. My vitals are checked at least ever four hours. All of my wound/incision dressings and tubes & wires are off of me. Only thing I have is a small O2 tube under my nose tucked behind my ears oh and leads attached to a wireless EKG unit.

I'm alive

June 9, 2012

In severe pain but alive

On my way

June 8, 2012

Im about 10 mins away from the hospital. In an hour and a half they'll be accessing my heart. I want to take the time to say I love my children more than words can express. I love Jason and thank God there is a strong good man in my kids lives. I love each of my brothers and sisters cousins aunts uncles Jenn all of my friends and my coworkers. I love my kitties and puppies. I love my life. Of course to all those I've lost I love you always but I'm not ready to be with you yet. Dear Lord I pray. .. Hail Mary Full of Grace & Our Father who art in Heaven.

Just got through my pre-op

June 7, 2012

Ekg blood tests urinalysis chest X-rays all done. Met with the anesthesiologist and cried. The pulmonary catheter explanation brought on the water works. Ps the artery blood draw on my wrist freakin hurt and still hurts.

I need to go eat buy some stuff at Target and then spend the rest of the day and night with my kids. Have to be at the hospital at 5am for my 630am surgery.

Please Pray

I'm so extremely exuahsted especially today is this normal?

June 6, 2012

Why oh why am I THIS tired. I haven't been this tired in months and that's saying a lot because I am always tired. Thoughts!?

Hopsital Hair

June 6, 2012

So the first thing I did to prepare for the hospital was to chop off half of my hair. I am a little sad about it but I know it will grow back.

I am at the point where I have to put things in a bag that I may want or need after I am cut open. Undergarments and socks are a no brainer and I guess a robe and slippers. Good thing I held onto those items. Next - well I suppose I will be in a hospital gown but I guess I will bring a pair of my own pajamas!? Lastly an outfit to wear home. To try to lift my spirits I bought a very colorful bag to pack all of that in.

So what else - I will be in a room mostly by myself for days what will I need? Basic personal care items, some entertainment, communication and paperwork I will need about my medical procedure(s).

My guess is wine is frowned upon in that establishment. LOL

So I will bring a power strip to be able to charge my cellphone, my Nook and perhaps my laptop. (not sure on the lap top). I have some books and my purse.

As long as I wake up with a beating heart, breathing lungs and a functioning brain and body well than that is all I really need.

Three days

June 5, 2012

I have an overcrowded house and the only place I can find refuge and relax is here in my bed

I need comfort patience consideration empathy help but I do not need negativity cruelty hostility bickering.

One week to go! :(

June 1, 2012

Well I keep reading about this calm that comes days before the surgery. I think that is code for depression. I am so depressed today I can't even cry. Yes I know I have people and things to be very grateful for and I am but I am still depressed. Tonight I will try to lift my spirits by getting pedicures with my daughter. Alas, I will hope for a good day despite my emotions.

Too much to Do

May 27, 2012

This is my last week of work. Next week is jam packed with things to do. Friday I have to return my rental car and pick up my mini van. Its been at a shop for repair after my 4/21 car accident. I'm still dealing with whiplash btw. That same day my youngest has a mid day award assembly. My inlaws will arrive this Saturday.

I have to try to reschedule my follow up appt with Dr. Landvater at Rex Hospital because of conflicts. My older son has his awards at 9am ( same time as my appt) and my oldest, my daughter has awards at 1030 and then her 8th grade graduation at 1130. Tuesday the older two have field trips. One is going 2 1/2 hours away to the beach on a charter bus which makes me very nervous. She has to meet the bus at 6am! My older son has his 5th grade trip and one of us has to drive and chaperone. That day from 11-12 my youngest has a classroom party and the Kindergarten graduation is at 6pm.

Wednesday I have to pack and prep for the hospital. Thursday I have preop most of the day beginning at 8am. Friday June 8th I have to be at the hospital by 530 am for my surgery. :/

Enjoying the simple things in life

May 27, 2012

Facing a procedure that will stop your heart is an eye opener to say the least. Historically I am a very high strung worrier. I try to be everything to everyone and have a hard time saying no. I guess I am a people pleaser. I probably create a lot of my own drama by dwelling on things but hey that is me.

Well, I have noticed a shift in my demeanor since everything has unfolded. I am slightly more laid back. Partly because I just don't have the energy to do what I used to do and also because I think to myself "in the scheme of things will this (whatever it may be) matter in the long run?"

I have been accused of being lazy and of not caring but that is exactly the opposite of who I am. I care too much and I am an over achiever. I just simply can not do it all anymore nor do I care too. My new years resolution this year was/is to simplify my life. I am still working on it but this pending surgery has certainly helped keep my goal in focus.

I am discovering what truly brings joy to my life and am trying to pursue these things and those people. Cutting out negativity from my life is a challenge but day by day I try. I am recognizing the many blessings that have been stowed upon me and am cherishing every moment.

Finding balance in my life between my full time career, my children/husband/pets, my family & friends, my house and every other aspect of my life has been a struggle for me ever since the decline of my overall health. If I don't phone you or return a message it is only because I am physically, mentally and emotionally exhausted. Please be patient and try to understand.

I am moved to tears of happiness by the kind words and thoughts that are pouring out for me. I can not thank you enough for being a part of my support system. <3

If you are mean.... Go Away!

May 24, 2012

I try my damnedest to focus on the positive. It is truly a challenge for me but I am doing it. I was moved to tears yesterday from all of the wonderful beautiful things my friends and even strangers had to say to me and about me. When my husband Jason asked me what was wrong all I could blurt out was that people are so nice.

Then, this morning I find an email from someone I don't know but apparently had his email address. I had sent out an email to my contact list which read:

"Hello

You may or may not know this but I am scheduled to have Open Heart Surgery on June 8th to repair my Mitral Valve. If you pray please add me, my family and my doctors to your list. If you do not, please send good thoughts and hopes my way. Feel free to forward this email to any of our mutual friends.

Here is an online journal about my surgery journey in case you are interested.... http://www.heart-valve-surgery.com/journals/user/chrissyfowler

Thank you for being a part of my life. =)"

I will share a sample of what this extremely rude and hurtful person said to me....

"FIRST AND FORMOST I HAVE NO IDEA WHO YOU ARE. SECOND WHN I WAS IN A VERY BAD WAY I DID NOT FORWARD ANY GUILT TRIP
ON FAMILY OR FRIENDS. IT IS CALLED QUIET DIGNITY. TRY IT!"

It made me cry. How can people be so mean and, well, heartless!

Alas, I am not going to let an angry person bring me down. I will continue to focus on positive happy things in life. I have about two more weeks before the big day and I intend to make the best out of each moment. <3

And so it begins

May 23, 2012

In a little over 15 days my heart will stop. I am terrified that my mother's fate of a very young death could be my own. When I was 17 my mom lost her 6 month battle to cancer and died at the age of 34. At 36 years old I never imagined I would be facing open heart surgery.

I suppose I should explain a little bit of my heart history. When I was 19 in 1995 I was officially diagnosed with Mitral Valve Prolapse. I could have had heart issues my entire life but it was not until I was interviewing for a teaching job at a Hospital Preschool that it was discovered. Of course at that time I went through some basic diagnostics including an EKG and an Echo. I was advised to see a cardiologist yearly to follow up on my condition but I did not have any restrictions nor did I need to take medication except for antibiotics prior to dental work.

Honestly I don't remember the next time I saw a doctor about my heart. Because I have an extreme phobia of dental work I didn't need to take prophylactics very often. I avoided dentists like the plague. My guess is the next time I had to address my MVP was when I was pregnant in 1998 with my first child. I did need antibiotics during my labor and delivery because of my heart. I followed up with a cardiologist in August of 1999 and my condition was about the same although there was evidence of a slightly dilated left ventricle but my condition was labeled "trivial mitral valve prolapse". I was told I would only need to be seen if I were to become pregnant again. Baby number two was much of the same, I only needed antibiotics at labor and delivery. In 2001 I became the mom of two beautiful children.

In December of 2002 we discovered we would be relocated from central coastal NJ to central NC. One of my aunts works at a cardiologist's office so she encouraged me to see one of her doctors before we moved. I followed up about my heart that same month. In a note to my physician it states that there was a grade 1/6 short scratchy systolic murmur with no clicks. An EKG demonstrated a sinus rhythm with first degree AV block at 220 m/sec but apparently this was also indicated on my first EKG in 1995. A follow up echo was recommended but I am not sure if I received one at that time.

In 2005 I became pregnant with my third child. Again I needed antibiotics at labor and delivery. I finally saw a cardiologist in early 2010. I received an EKG and an Echo. By this time there was evidence of mild MV regurgitation and a stress echo was recommended. It was confirmed that I would still need to use prophylactics and because of the occasional chest pain I was prescribed 12.5 mg of metropolol twice a day. I was compliant for a very short time. I had no symptoms.

Fast forward to early 2012. I had been having a laundry list of symptoms and saw my doctor, two endocrinologists and a rheumatologist. I was diagnosed with fibromyalgia. While that did explain a lot of things I still felt like there was more going on. I had joined a gym and was noticing that at the simplest shortest exercise my heart rate was peeking at a very fast rate. Once it was over 185 and I was hardly exerting myself. I decided it was time to go back to my cardiologist.

In March I was given an EKG, had to wear a heart monitor, was re-prescribed the metropolol and scheduled a stress echo. During the stress echo there was evidence of moderate to severe mitral regurgitation. To get a closer look a TEE (trans esophogeal echocardiogram) was scheduled. It was then that my severe regurgitation was recorded. I was informed I would need heart valve surgery.

To make a longer story short, I met with a cardiothoracic surgeon. The goal is to repair my mitral valve with a combination of inserting a cloth-covered ring around the valve to bring the leaflets into contact with each other (annuloplasty), removal of redundant/loose segments of the leaflets (quadrangular resection), re-suspension of the leaflets with artificial (Gore-Tex) cords. The plan is to access my heart through a small incision on the right portion of my chest and to go in between two of my ribs. I need to discuss this to make sure he uses the safest most accurate method even if that will mean a sternotimy.

The scariest part of the entire process to me is the use of the cardio pulmonary bypass machine and the fact that they will have to stop my heart. The possible complications and risks also frighten me. I am NOT ready to die. My children need me and I need them. I will get into that during another journal entry.

June 8th 2012 is the "big day" and I get so nervous that I could vomit.


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