Septal Myectomy Part 2 - Mitral Valve Replacement

Hi Everyone!

This post is a little late, lol. Almost 3 years 😊.  So much has happened. I guess I should start where I left off on my last post Septal Myectomy Part 1.


Dec. 2, 2016
Very Bad day emotionally. After being told that I was going to have to be opened back up for Mitral Valve replacement and another Septal Myectomy I'm devastated. Fear and depression are worse than ever. I'm told surgery will be Dec. 5 early AM.


Dec. 3, 2016

Walked a lot today.  Lost count how many times around the nurses station.  Mind is going 100mph. All the What if's. Long day.

Dec. 4, 2016

More walking and waiting. Pain from first surgery a little better. Anxiety is off the chart. The lead Anesthesiologist came to see me this evening. Wanted to go thru the plan for tomorrow and prepare me mentally for another Intubation awake. (Fyi... 3 years later I still have nightmares about this part.)

Dec. 5, 2016 

4:00 AM ish... Awaken by the Blood Nazi (She earned the title, trust me.) Time for morning blood work. 6 AM I'm told to get ready, they are coming to get me for surgery. 7 AM, it's go time.

They wheel me in to the prep-room & start running Ports, etc... Hooking you up. Fun stuff when All your arteries, veins whatever are blown and have been tore up by the Blood Nazi!

They take me into OR. Cold, white, stainless steel, Big TV monitors. Slide my big ass onto the operating table. Now all I see is the white ceiling and a bunch of people with masks, prepping.

The Anesthesiologist comes into my view, tells me they are about to begin the intubation process.

Not sure how many people it took to hold me down, but I do know it was almost not enough.  It took 2-3 tries this time and then.... Lights out. According to the notes, surgery lasted about 6-8 hrs.

Dec. 6, 2016

I wake up in ICU, breathing tube hurts, still in. I hurt All over. Due to I had already gone thru this, I made up hand codes for my wife before surgery so I could tell her simple stuff while tube was in. 4 Fingers meant "Tell them I want this Tube Out Now!" I kept showing her 4 Fingers, than eight Fingers, LOL. Breathing Tube Sucks!!! They took it out eventually, and later took me to step-down room. Pain is worse second surgery. Back Hurts BAD.

Dec 7-14th, 2016

I'm told surgery went well and I'm doing good.  Walking daily around the nurses station. Harder second go around for sure.  They do final echo and tests on the 14th and say I'm ok to go Home. Now I have to take Warfarin for Mechanical Mitral Valve. Released on the 14th officially. First time I see the outside of Cleveland Clinic in almost 30 Days. Go back to the hotel for the night.

Dec. 15th, 2016

We fly home to Tennessee and I get to see my kids for the first time. Pain is bad, but it gets better over time. Thanks GOD for the Heart Pillow!

SEPTAL MYECTOMY PART 1

I am late in posting for this, but I have been crazy busy.  Today is December 3, 2016 and currently, I am in a room at the Cleveland Clinic recovering from the Septal Myectomy surgery that was done on November 25. Yes, the day after Thanksgiving.  Before I get ahead of myself let's rewind this story to Nov 20, the day my wife & I Flew to Cleveland from Nashville.

Nov  20 2016 ... My wife and I drop off are 2 children to my mom's house, give kisses and try to explain to a 2 & 6 yo that we will be gone for around 2 weeks because the doctor is going to make daddy's heart better. If you have children you know how hard that was.  Then my dad takes us to the airport in Nashville. We make it  thru security and eventually board the plane. I have only flown a few times several years ago and there was a reason for not flying, I hate it. Long story short , my wife enjoyed watching me almost rip off the arm rests from tensing up during the flights, lol.  We arrive in Cleveland around 7 pm. Cleveland Clinic arranged a driver to pick us up, which was great. Felt like a big shot when he was standing there with the sign with my name on it.  Checked in to the hotel and got ready for the next day of tests.

 Nov 21, 2016... Up early, didn't sleep well. Comfort Inn where we are staying, has a good breakfast bar and they provide free shuttle to CC. Arrived at CC at 6:45am.  This place is amazing! Had every test knobs to man and met with Dr Lever. He is a hard working man. We left at 7 pm and he had 3 more patients waiting. Wow what a day!

Nov 22, 2016... Arrived at CC at 6:40am. More testing and dental appointment today. At dental appointment, they advised they would need to pull a tooth, back,bottom molar. That will be Tomorrow , along with meeting anesthesiologist and surgeon Dr Johnston.

Nov 23, 2016... Had tooth pooled, that sucked, lol. Then met with anesthesiologist and surgeon. They explained the procedure. Now it is getting real!

Nov 24, 2016.... Happy Thanksgiving! We layed around all day in room at hotel. Went to Tower Center for Dinner and some gambling, why not?

Nov 25, 2016.... SURGERY DAY.  We arrived at CC around 4:50am. We were advised to be here at 5:15. We get checked in within a few mins and then they call me back to get my gown on and lay on gurnee.  They let my family come back for around 15 to 20 mins. Then a nurse comes gets me and takes me to OR area. Staff is amazing. They explain everything to me.

This is when I'm told by the anesthesiologist, "Usually we intibate patients after we put them under. Unfortunately you have a difficult airway. So we will need to do it while your awake."  This SUCKED! !!! After 4-5 tries, he finally gets it in. 😲  Then he flipped the night night switch. Everything went dark.

Suddenly I open my eyes and he is pulling out the tube. Why? Wtf? Everything goes dark again. I hear my wife calling my name. Holding my hand. I begin to realize that surgery is over. My memory is very spotty at this time. I'm in and out. I wake up sorta, I'm alone laying in a bed when I hear the nurse speaking to another patient. I can't see anything, but I can hear very well. Suddenly I hear code blue!!! Code blue!! Suddenly the room has 20-30 people and seems like total chaos! I then hear one voice over all, he says " get me a scalpel and a pair of pliers" . I also here someone say crash cart is here and ready. I start feeling around my chest. I'm still kinda drugged and I'm wondering Omg, are they working on me? This went on for a few mins if that and then I hear "take him to OR!" I found out a few mins later from a nurse that the gentleman next to me coded, they had to reopen him right there and shock his heart. They Saved Him!!!! Craziest thing I have ever listened to in my life. People, this why you go to a COE to have heart Surgery!!!  They can handle anything!

I spend the next day and a half in Icu. Again the staff were amazing. Dr said surgery went well. They did not do anything with the mitral valve due in their opinion it had a good chance of fixing itself.

Nov 27, 2016.... They say my numbers were good for me to get my own room in step down unit. 👍💪 hooray! Pain hurts but tolerable with good drugs 💉.

Nov 28, 2016.... Rough day for me pain wise. My chest woke up,lol. Hiccups SUCK!!! Can't sleep, very uncomfortable. Bed in step down room is uncomfortable as hell. Walked a little today. Everyone says I'm doing good.

Nov 29, 2016.... Bad night and rough day! This bed sucks!!! Very little sleep. They say I'm doing good. Walked around nurses station 3 times today. Hurting and tired. They say tomorrow they will pull my heart wires and then do an echo with amyl nitrate. If it looks good,I might be released!!! I'm so happy!!!

Nov 30, 2016.... Still not resting much. So tired. Pain is getting easier. Walked 5 times today. Pulled the wires, SUCKED! Echo done after. Just waiting to here when we can go. Below is photo of xray showing wires holding chest together.

Doc comes to room. I have some bad news. Turns out echo did not show the mitral valve area as well as they would like and had some regurgitation. You are Not being released today. We will need to do a TEE Echo tomorrow for a better view of it. Basically they stick a camera down your esophagus. If that looks good, then you can go home.
Me: "F!CK!

Dec 1, 2016.... Pain is better. Still sore but getting better. They take me for test early. SUCKED! But not that bad. Walked a lot today. Nervous. Waiting. Doc shows up around 1:00pm . He says " Bad news. Your not going home. The mitral valve area has a gradient of 120, Which is what we call a plus 3. The valve is regurgitating severely. We will have to operate again on Monday. "

Me: $%&$* "#$%$$&&$$&&!!!! WTF!!!!!!!!!!! Let's just say he heard a lot of bad language.

So, stay tuned for part Two, Mitral Valve Replacement.

What is Hypertrophic Cardiomyopathy (HCM)?

To better understand what Hypertrophic Cardiomyopathy (HCM)is let's first talk about how cardiomyopathies are described.

Cardiomyopathy is a condition in which the muscle of the heart is abnormal in the absence of an apparent cause. This terminology is purely descriptive and is based on the Latin deviation. HCM is a primarily and usually familial cardiac disorder with heterogeneous expression, unique pathophysiology, and a diverse clinical course, for which several disease causing mutations in the genes encoding proteins of the cardiac sacomere have been reported. There are some forms of HCM that are currently being debated by the medical community regarding how they should specifically be defined because the cause of the hypertrophy in these cases is now understood to be from other mutations impacting either the storage of glycogen or lysosomal storage within the heart.

While HCM has typically been recognized by its structure ie., hypertrophy, the electrical functions of the heart are also adversely affected. There are four types of cardiomyopathy: “Hypertrophic”, “Dilated”, “Restrictive” and “Right ventricular”.

The main feature of hypertrophic cardiomyopathy is an excessive thickening of the heart muscle (hypertrophy literally means to thicken). Thickening is seen in the ventricular septal measurement (normal range .08-1.2cm), and in weight. In HCM, septal or wall measurements may be in the range of 1.3cm to 6.0+cm anywhere in the left ventricle. Heart muscle may also thicken in normal individuals as a result of high blood pressure or prolonged athletic training. Furthermore, there is a fine line between and athletic heart, hypertensive heart disease, and a heart with HCM.

In Hypertrophic Cardiomyopathy (HCM), the muscle thickening occurs without an obvious cause. In addition, microscopic examination of the heart muscle in HCM is abnormal. The normal alignment of muscle cells is absent and this abnormality is called “myocardial disarray”.

Article source: HCMA Hypertrophic Cardiomyopathy Association website. www.4hcm.org

PARENTING WITH HCM - THE STRUGGLE IS REAL

Being a parent is by far one of the hardest and challenging things a person will do. Being a Parent with HCM or any other Chronic illness is extremely difficult & stressful to say the least.  THE STRUGGLE IS REAL my friends!  

I am 41 years old, married with two children ages 2 & 6. My 2 y.o. daughter is in full on terrible two's, lol. Into everything! We are also in the process of potty training her. My 6 Y.O. boy has ADHD and his nick name should be "Flash",lol. They are Great kids and I love them more than anything.  My wife and I are one of those couples that had kids later in life, not from lack of trying, but it is just the way life happened.

I was diagnosed with HOCM in Dec. 2015, but looking back I have been symptomatic for many years.  But it seems like Dec. 2015 was when I went down hill with HOCM.  Almost like flipping a switch.  Since then, Parenting has become more and more difficult. This is truly one of the hardest things to deal with and accept mentally and physically.  

When your child is crying and wants their Daddy to pick them up and comfort them & little things like giving them a bath, No or Not right now is not an option. This is not only difficult when you are having Chest Pain, Shortness of Breath, Heart pounding so hard it feels like it is screaming "Let me out!", & extreme Fatigue, it is damn near impossible. But sometimes, I have to push through it and do it. Then my symptoms get worse. My wife of coarse helps a lot!  I really don't know if I could do it with out her.  

So I have had to find ways to make things a little easier and to cope mentally. Do they help A Lot? No, HCM is what it is, but they do help a little.  See the links below, maybe they can help you as well.

Parents Magazine - "Parents and Chronic Illness"  http://www.parents.com/parenting/better-parenting/advice/parents-and-chronic-illness/ 

The Health Sessions -  Parenting with Chronic Illness: How to Take Care of Your Baby and Yourself

WEBMD - PARENTING WITH CHRONIC PAIN - http://www.webmd.com/pain-management/chronic-pain-11/parenting-children 

Dark Days

Hi,

It's been awhile since I have posted anything.  I have had many bad days. Seems like the bad days are all I have now.  My symptoms are getting worse.  Chest pain, Shortness of breath, Palpitations, Fatigue, Dizziness are a daily occurrence.  Sometimes all day. Now it seems I may be having some A-Fib mixed in their also.  

Lately I have been experiencing BP Spikes.  My normal BP on Meds is usually close to 120/70.  Every once in a while I will get a spike to like 160/82 for about 20-30 mins.  When this happens, I get agitated and angry really quick.  To the point where I am almost out of control.  I also find my self yelling at my children for little things that would normally not bother me.  This is all taking a toll on my marriage and I fear my relationship with my children as well.

I feel like I am a burden on my wife and my children.  My wife is a strong woman but I see her becoming more and more distant with me.  Bad thoughts are creeping into my mind.  I love my family and would never do anything to hurt them.  But sometimes I think "Would they be better off with out me?" I never thought I would even think about Suicide, but after dealing with this disease for so long, bad thoughts find there way into your head.  I could not act on them due to I know it would hurt them too much and they need me.  I guess I am just having some bad days.

I am scheduled for a Septal Myectomy  at the Cleveland Clinic near Thanksgiving.  Really hoping the surgery will go well and give me some relief.  Might be a light at the end of this tunnel... we shall see.  I will post photos, videos, and blog on my experiences thru it all.

Hoping all of this might help someone going thru this damn disease in the future!

Walt   

Hypertrophic cardiomyopathy (HCM)

Hypertrophic Cardiomyopathy - Explained

August 17, 2016 - Daily entry

      This week has been a bad week as far as symptoms go, today especially.  All day I have had frequent chest pains along with shortness of breath and fatigue.  some chest pains were in center of chest mild to moderate, but some were sharp and shooting.  They branched out from the heart towards my shoulders, sometimes to the left, sometimes to the right.  I am also having some swelling in my hands , face and feet.  I am really going to have to watch my salt intake. Pretty much been miserable all day.

On another subject not related. I am going to have to take my dog to the vet this weekend to have her put down.  She is a 14yo. Basset Hound that we have had since she was a pup.  This sucks to have to do, but she is in bad shape.  The worst part is going to be explaining it to my children.  So Pretty much this week SUCKS!  Looking forward to a better tomorrow, hopefully.

Walt

HELPFUL LINKS AND INFO

Hey everyone.  Below is a list of helpful links and information on HCM.  Hope this helps.

HCMA  (Hypertrohic Cardiomyopathy Association)

website = www.4hcm.org   

email = support@4hcm.org 

Phone: 973-983-7429 
Fax: 973-983-7870

Cleveland Clinic HCM Center

website =           Cleveland Clinic HCM Center 

appointments = 800-659-7822

Hypertrohic Cardiomyopathy Facebook page (HCMA)

link = https://www.facebook.com/groups/830709766982009/

HCM CENTERS

HCM Center	Location/Contact	Director
Brigham and Women’s Hospital	75 Francis Street Boston, MA 2115 Tel (857) 307-4000	Carolyn Ho, MD Medical Director, Cardiovascular Genetics Center
Central Florida Cardiology Group	1745 North Mills Avenue Orlando, FL 32803 Tel (407) 841-7151	Marcos Hazday, MD Ashlee Willis
Cincinnati Children's Hospital Medical Center	3333 Burnet Avenue Cincinnati, OH 45229 Tel (844) 227-7307	John Lynn Jefferies, MD
Cleveland Clinic Foundation	9500 Euclid Avenue Cleveland, OH 44195 Tel (216) 444-6970	Harry Lever, MD
Emory University Hospital (Adult)	1365 Clifton Road Atlanta Georgia 30322 Tel (404) 778-6070	B. Robinson Williams, III, MD Robert Campbell, MD Erin Demo, MS
Emory University Hospital-Sibley Heart Center (Pediatrics)	1405 Clifton Road NE Atlanta Georgia 30322 Tel (404) 256-2593	Margaret J. Strieper, DO
Johns Hopkins Heart Institute	600 N. Wolfe Street  Sheikh Zayed Tower Baltimore, MD 21287 Tel (410) 502-7974	Theodore Abraham, MD
Lehigh Valley Medical Center Heart Specialists	1250 S Cedar Crest Boulevard Center for Advanced Health Care, Suite 300 Allentown, PA 18103-6381 Tel (610) 402-3110	Matt Martinez, MD
Mayo Clinic- Rochester	200 First Avenue, SW Rochester, MN 55905 Tel (507) 284-8260	Steve Ommen, MD Director, Mayo HCM Clinic
Morristown Medical Center – Chanin T. Mast HCM Center	Gagnon Cardiovascular Institute 100 Madison Avenue, First Floor Morristown, NJ 07960 Tel (973) 971-5899	Martin Maron, MD
Northwestern Memorial Hospital’s Bluhm Cardiovascular Institute	675 N. St. Clair Street. 19th Floor, Suite 100 Chicago, IL 60611 Tel (312) 664-3278	Robert Bonow, MD
NYU Langone Medical Center	530 1st Avenue, Skirball 9N Silverstein Elevators New York, NY 10016 Tel (646) 501-0568	Mark Sherrid, MD
OHSU Hypertrophic Cardiomyopathy Center Oregon Health and Science University	3303 SW Bond Avenue 9th Floor Portland OR, 97239 Tel (503) 494-8750	Stephen Heitner, MD
Penn State Hershey Heart and Vascular Institute	500 University Drive Hershey,PA 17033 Tel (800) 243-1455	Eric Popjes, MD MSHMC Cardiology
Sanger Heart and Vascular Institute	1001 Blythe Boulevard Suite 300 Charlotte, NC 28203 Tel (877) 999-7484	John D. Symanski, MD, Program Director
Stanford University Medical Center	300 Pasteur Drive Stanford,CA 94305 Tel (650) 723-4000	Euan Ashley, MD Director, HCM Center
Tufts Medical Center	800 Washington Street Boston, MA 02111 Tel (617) 636-8066	Martin Maron, MD Co-Director, HCM Center
UCLA – Ahmanson Cardiomyopathy Center	100 UCLA Medical Plaza Suite 630-East  Los Angeles, CA 90095 Tel (310) 825-8816	Arnold Baas, MD Eugene DePasquale, MD
University of Kansas Hospital	3901 Rainbow Blvd MS 4023 Kansas City, KS 66103 Tel (913) 588-1227	Loren Berenbom, MD
University of Michigan Cardiovascular Center	1500 E. Medical Center Drive, Level 3, Reception C Ann Arbor,MI 48109 Tel (888) 287-1082	Sharlene Day, MD Director, HCM Clinic
UPMC Heart and Vascular Institute-Hypertrophic Cardiomyopathy (HCM) Center	200 Lothrop St. Suite 5B Pittsburgh, PA 15213 Tel (412) 647-9996	Timothy Wong, MD Director, HCM Center
University of Texas Health Science Center at San Antonio	Division of Cardiology  MC 7872 7703 Floyd Curl Drive San Antonio,TX 78229 Tel (210) 592-0361	Marc Feldman, MD Director, HCM Clinic
University of Virginia Health System	1215 Lee Street Charlottesville,VA 22908 Tel (434)243-1000	Christopher Kramer, MD Robert Battle, MD
Washington University School of Medicine	4921 Parkview Place, Suite 8A St. Louis, MO 63110 Tel (314) 362-1291	Richard Bach, MD
Winthrop University Hospital	259 First Street Mineola, NY 11501 Tel (516) 663-9696	Shihari Naidu, MD

BAD DAY!...

The symptoms have been bad the last few days.  Shortness of breath and Chest pains mainly.  Shooting pains from heart branching out to the right shoulder.  Also having some Palpitations and Fatigue.  Trying to push through it, but it is difficult.  Hoping it will get a little better soon.

Hey everyone! This is my 2nd Video Titled "MY HCM STORY PART 2"  Hope you like it!
Please share with others so we can educate people on this disease.

Thanks!

I have decided to do a series of videos to document my struggle with HOCM. This is my first one.  Hope you like it and Please share!

"MY HCM STORY  PART 1"

Introduction

Hi Everyone,

My name is Walter Rouse & I was diagnosed with HOCM December 14, 2015. I am 40 years old, married with two children ages 2 & 6.  I have lived in Middle Tennessee for the last 15 years. I am a Southern Boy, originally from South Florida.

I am starting this blog mainly to have a place to document what I am going thru, what I have learned, and how I am feeling, so that others may learn from it or at least take comfort in knowing they are not alone.  Also, I want my children to be able to see what I went thru, so they will better understand in the future why there father missed certain events or was not able to do certain things.

I hope you take from this Blog what you need and share it with others that might benefit from it.

This disease is a Beast, no Doubt! But it is not the end!

Thanks for visiting my Blog,

Walter Rouse