Tag: HCM

Since You’ve Been Gone

Whoa, it’s been a hot minute hasn’t it. I am finding that after the 12 For 1 Diaper Drive I tend to take a break from blogging. It’s not really planned, but it tends to go that way. Which is a shame since we’ve had a lot of fun the past month! I’ll catch you up.

Mike had his first screening for Hypertrophic Cardiomyopathy and tested just fine with no restrictions. This was great news to confirm, but we already had a feeling he was just fine.

Mikey started his 2nd year of preschool at the same place he was last year and over the summer. His favorite color is red and he wants to be an astronaut.

I started a temp job in Annapolis and this is my view – fingers crossed it goes permanent in a few weeks.

We took our first family vacation (where we didn’t stay with family) to Ocean City. Mike loved the beach!

He wasn’t too keen on the rides, but did jump on the boats for a spin.

Did I mention we stayed in a hotel? Mike loved letting either Mommy or Daddy sleep in ‘his bed’.

Oh yeah, #12for1 raced passed the 15K goal and went right to 22K diapers. No biggie ūüėČ

Happy Heart Month!

It’s funny how quickly life changes and you have no choice but to embrace the change and adapt. When S. was diagnosed with Hypertrophic cardiomyopathy (HCM) last year, we had to do just that. And since he had that experience and is almost on the other side of his recovery, February takes on a new meaning since it is Heart Healthy Month!

Since I’ve mentioned HCM a few times here I thought I would celebrate Heart Healthy Month by sharing some information about the disease.

  • HCM is a genetic disease that affects 1 in 500 people.
  • It is characterized by the thickening of the heart muscle (usually the one that separates the ventricles) blocking air intake causing the heart to work harder.
  • HCM¬†is the leading cause of sudden cardiac death in young adults.
  • Most people with HCM have no symptoms and experience no significant problems. For others, it can cause shortness of breath on exertion, dizziness, fainting, fatigue, and chest pain.
  • For an accurate diagnosis, a physical examination, chest x-ray,¬†electrocardiogram and/or Echocardiography is needed.
  • Treatment can vary depending on the patient – S. is on a beta blocker for the rest of his life, has a defibrillator to regulate his heart rate and had surgery (Myectomy)¬†to ‘shave’ down his heart muscle (which won’t grow back).
  • It is sometimes present at birth, but it most commonly develops in early adulthood. Since it is genetic, there is a 50/50 chance a child will ‘inherit’ it from their parent. Mike will be checked by his pediatrician yearly until adolescent which is when he will go to a cardiologist yearly for checkups.
  • Life post surgery with HCM for S. will be pretty normal, he just needs to watch his diet and exercise – like everyone does!

If you are interested in learning more about HCM or other heart diseases, visit the American Heart Association

And don’t forget to wear red on February 3rd!

 

How to Help in Times of Illness

I’ve talked about it before, but about a year ago, S. was diagnosed with¬†Hypertrophic Cardiomyopathy (HCM)¬†and after dozens of doctor’s appointments, hours spent online reading and discussing his options, he had open heart surgery and a pacemaker implanted mid-September at Johns Hopkins. I could go on and on about that experience, but the real memory is how our family and friends from near and far rallied to do whatever (and I do mean whatever) we needed while we were in the hospital (just over a week) and beyond.

If someone you know is dealing with an illness or might be spending time in the hospital you want to help right? Of course you do. But what CAN you do to help that requires little of the family but makes a big impact? Here are some suggestions from someone who has been there.

{Notes} Quite possibly the easiest (and cheapest of all). It’s important that the patient and their support team knows people are thinking about them and praying for them. As a caregiver I received countless Facebook and text messages from friends and even acquaintances. My favorite messages included funny memes. It showed that someone was thinking about us at a time that felt very lonely (I am 100% I was the youngest spouse on the cardiac ICU) and someone was taking time to find something they thought would make me laugh.

{Care Packages}¬†Before S’s surgery we got two care packages, one from a long time friend with a bunch of fun goodies like headphones, slinkies and disguise glasses. The other package came from a friend who I met through my Momma and have yet to meet in person. She sent things to keep S and I entertained in the hospital and some fun stuff for Mike while we were away. This is just another great reminder that people were thinking about us and taking care of some of the things we might have forgotten (like pens and Post-It notes for the hospital).

{Services} Dealing with an illness for such a long time puts a lot of other things on the backburner like keeping the house clean. S’s Aunt offered to book a housecleaning service right before his surgery and it was amazing. We found a great company ThinkMaids¬†who did an amazing job top to bottom. But services don’t always have to be done by someone else. My Aunt graciously went to Harris Teeter and picked up and delivered the groceries I ordered online. Helping out comes in many sizes and price ranges – find out what the family needs and jump in!

{Food}¬†Food is probably the easiest thing to do to help families who are dealing with an illness. S.’s grandparents and coworkers sent a beautiful fruit basket which was SO nice, especially after eating cafeteria food for a week. His¬†cousin reached out before and after about us ordering dinner from our favorite take-out place and letting them pay for it. If it’s one thing we have learned the past year it is to take people up on their offer to help, so we sent Debi our order and happily answered the door when our food came. Grubhub recently started selling e-gift cards making it easier for people to send takeout food without asking for the details. Just remember if you are helping out with food – it should be pre-made or easily made without much clean up. And keep it basic. Now is not the time to try a new Yugoslavian dish that was handed down for generations.

{Self care}¬†While it was easy for me not to make S’s surgery ‘all about me’, it definitely was a challenge at time to remember to take care of myself. My dear friend Miranda was kind enough to send me a giftcard to my favorite spa, Swan Cove. I waited until we got home and settled for a few weeks then happily skipped to the spa for a much needed massage. Sometimes the family needs gentle reminders that they need to be taken care of too. Thankfully I have friends (and one of S’s nurses I will forever be grateful for) who reminded me.

We are so thankful for all our friends and family who made it a priority to think about us and reach out during the surgery and recovery.

Six Years

It’s wedding season! I am seeing so many couples getting married on my Facebook feed the past few weekends and it’s making my heart happy. Being married is so much fun – well, most the time if you did it right. It is hard to believe that tomorrow S. and I are celebrating SIX years of marriage!

This past year has been, by far, the hardest on us. It was about this time last year that S. starting having dizzy spells and chest pains leading us on this journey to a diagnosis of¬†Hypertrophic Cardiomyopathy and ultimately open heart surgery two weeks ago. If you had told us, standing in front of our family and friends, six years ago we would have been sitting in a hospital for a week scheduling pain medication, looking for a cardiac rehab and figuring out follow up appointments – we both would have laughed. No one plans for these huddles in a marriage, but this hurdle has changed us as a couple. We both have learned our true strength individually and together which I find so empowering. Our hardest year has been my favorite so far. But if we could keep our seventh year less … busy … I would be okay with that.

So as we celebrate six years of marriage, I leave you with this reading from our wedding:

“But ultimately there comes a moment when a decision must be made. Ultimately two people who love each other must ask themselves how much they hope for as their love grows and deepens, and how much risk they are willing to take. It is indeed a fearful gamble. Because it is the nature of love to create, a marriage itself is something which has to be created, so that, together we become a new creature.

To marry is the biggest risk in human relations that a person can take. If we commit ourselves to one person for life this is not, as many people think, a rejection of freedom; rather it demands the courage to move into all the risks of freedom, and the risk of love which is permanent; into that love which is not possession, but participation. It takes a lifetime to learn another person. When love is not possession, but participation, then it is part of that co-creation which is our human calling, and which implies such risk that it is often rejected.‚Ä̬†‚Äē Madeleine L’Engle, The Irrational Season

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