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.