Oct 12, 2016

Choosing Whatever

As I wrote in my last blog post, I was diagnosed with obstructive hypertrophic cardiomyopathy *(HCM) in August.  The HCM Association, of which I am now a member, encourages those diagnosed to "share their story" in order to increase public awareness of this condition. It's not uncommon (1/500 have it, but many don't even know that they do). And if you have it, your kids have a 50/50 chance of having HCM. So, it's worth knowing about, particularly if you have an unexplained heart murmur or a history of family members dying unexpectedly.

So .... here's my story.

***

August 2016:  All I wanted was more Ativan so that I could fly to Europe in the fall.  I need to find a new doc since I no longer commute to DC.  So I decide to get a physical. It's the mature thing to do.

The doc listens to my heart and hears a murmur.  It's been there for years and no one cared. I had an echocardiogram at one point but was told it was normal. The new doc orders an echo because the murmur bothers him.

The night I had the echo some cardiologist I had never met leaves a message on my cell. "I read your echo. Your heart is complicated. Blah blah.  I've sent a prescription to the pharmacy for you. Take it immediately. Let's talk in the morning."

I play the message for Mike.  It didn't sound good, but I laughed if off. I do not pick up the prescription. I mean, who was this guy?  I don't sleep much that night.

The next morning Dr. T explains that I have HCM and I explain that I will be leaving for Europe on October 1 and can this all wait?  No it cannot. Within the next 3 weeks I get more and more messages that I'm scheduled for this test and that test.  I dig out my file on family medical stuff. Wow, my father had this. I talk to my cousin and she knows more than I do about my own family. I learn a lot. My father, brother, and aunt died from HCM. There's some suspicion that another brother may have died from it (he died of SIDS at 6 weeks). Some of my cousins also have it.

I'm beyond upset that I've inherited this from my father, as that is a very complicated issue. Does childhood crap ever end? And what about my kid?

September 2016:  All the test results are in. I have access to them online and read them and google every sentence. At this point, I'm a few websites away from opening my own cardiology practice even though I don't really know how the heart works. My father and brother died from sudden cardiac arrest** and they had HCM. Why didn't I know that?

I stop caring about eating. I must be really sick because I didn't know that was possible.

Mike and I meet Dr. T.  He's young and seems smart, but the atmosphere is serious. HCM is why I've been short of breath (finally, something NOT caused by being overweight and out of shape). It's why I had a very difficult time emerging from anesthesia 4 years ago. He insists that I get an ICD as soon as possible so I don't drop dead. An ICD is an Implantable Cardiac Defibrillator.  It isn't a cure and does nothing to treat the underlying heart condition, but will shock my heart in the unlikely (but possible) event that it goes into a fatal rhythm.  I argue back, armed with my own knowledge from google. Dr. T yells at me. Yells. Mike looks pathetic.

Dr. T doesn't do this kind of surgery. And, against my better judgment, I schedule the operation with another doc.  I hate the other doc. He's flip and sounds like he's selling me a new car.  It's a new kind of ICD, the S-ICD!  The wires don't go in your heart!  There's no pacemaker! It's on your side, under the skin, not up by the collar bone! It's a piece of cake.

I have the operation, during which my heart rhythm goes bad, and they shock my heart twice with those paddles they have on TV.  The pain afterwards is unbearable and I am almost unable to move. I develop a blood clot in my leg. I remember my father getting a blood clot in his leg. It's all just too much too fast. I'm no longer leaving for Europe on October 1. It's not a piece of cake. I've lost 10 pounds. I want to kill that doc.

October 2016:  I'm feeling old. I'm supposed to check my heart rate once a day (it needs to stay low) and stay hydrated. I check it every 5 minutes and obsess if it gets too high. I'm drowning in Crystal Light. I'm waiting for that damn ICD to shock me.

I start to feel sorry for myself. I mean there's this thing sticking out of the side of my body and I can feel the wires in my chest and it hurts like hell. I'm told that I have a mild case of heart failure (sounds worse than it is). I'm not that sick but I feel like a patient. Forget my father; my worse fears are coming true -- I'M TURNING INTO MY MOTHER. Mike should divorce me now, but he won't listen.

Lots of fabulous people develop terrific outlooks on life when faced with a road bump. They choose joy. They don't complain. They become grateful for every day and hug those close to them.  They enjoy sunsets and grow flowers and read good literature and become better people. I am not those people.

I am a slug. I binge watch Grey's Anatomy on Netflix, and spend ridiculous amounts of time on google. The meds I take turn me into a zombie and that's my excuse. I try to stamp but all I do is stare at the paper, scribble some mess, and walk away. My friends and family have been amazing and I need thank you cards, but it's not happening.

Now: As the days go by, the pain recedes, my attitude improves, and I'm returning to normal. I'm driving, getting out, seeing friends, etc. I'm not hugging people, or choosing joy, but I'm beginning to get a grip. I'm incredibly grateful for access to good health care and good health insurance and wonderful friends and family.  My husband is a saint.  I'm not in Aleppo. I feel a bit foolish for making such a big deal about all of it.

My appetite returns.  Damn!

I hope to be back with cards one of these days, but the mojo is still buried somewhere. I'm too busy today to write any more. George has just died on Grey's Anatomy, and I'm freaking out. How can they kill off George??  And, will Izzie survive her brain tumor?  Will Meredith and McDreamy get married? Will I ever choose to get off the couch?

I'll keep you posted.

____________


* The majority of folks with HCM have few or no symptoms and live a full life. But others die from it or are severely affected.  You just never know.
** sudden cardiac arrest is when the heart stops working properly and suddenly stops beating.  A heart attack is different -- it is a when the blood flow is interrupted.  

52 comments:

  1. Joan! Thanks for the update...and for being so real:) I woke up just last night thinking we hadn't heard from you in awhile.
    Yes, Missing the trip to Europe stinks! You are blessed to have a saint for a husband. You still, in all this, can make me smile! Sending hugs. Wish I had your snail mail so a card could make it to your door.
    Thanks for the info on HCM too.

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Thanks for sharing Joan. I know you don't want hugs, but I guess a cyber hug can do no harm.
    Thinking of you
    Love
    Hannelie

    ReplyDelete
  4. Wow, that's a lot of info for you to process! I'm so glad you've been real, and happy to hear that you're progressing physically and emotionally! I pray that all things work out, and that trip to Europe is still in the forecast, because you definitely deserve it after making it through 2 doctors with terrible bedside manners! Praying...

    ReplyDelete
  5. Joan!! I was just thinking about you. I am so glad to read an update. I personally have not gone through anything major like this, but walking through it with my daughter has taught me much. One thing you cannot do, is compare yourself to others. Please go easy on yourself. I guarantee you that even the ones that look like they have it all together in the midst of life changing trials also have "off" days, you just don't see them. It's a lot like the grieving process, no one makes it out unscathed and everyone handles it differently. I, too, would love to send you a card! Yes, I'm sending lots and lots of cyber hugs as well. And a ton of positive thoughts!!! <3

    ReplyDelete
  6. It's ok to grieve the health you've lost, especially since it happened so out of the blue! And the disappointment of not getting to go to Europe, too. Give yourself time, emotionally AND physically! Sending warm thoughts, prayers, and {{hugs}} your way! When you go to Europe, you are gonna feel better and really be able to enjoy it rather than just slog through it! <3

    ReplyDelete
  7. Who said you have to be deliriously happy the whole time? Who said you have to be brave, calm, and stoic when faced with a serious heath issue? Who said you have to stay strong every minute of every day? Probably the same people that think we should all look like we stepped out of a Banana Republic catalog. Because they're equally ridiculous. You're alive and moving forward. That sounds like a win right now.

    ReplyDelete
  8. Joan, my entire family stopped speaking to me when I was diagnosed with breast cancer. They all "knew" a good attitude is necessary to fight cancer. Well, I was not in the mood for a good attitude and angrily got through the whole process. I was not interested in style points. We each get to do it our own way when we get yanked from the no health worries group and plopped into the now you have a condition to deal with group. Let someone else be the role model and poster child ... you just take care of you!! blessings!!

    ReplyDelete
  9. So sorry to hear about your health struggles Joan. I pray that you will get through this and feel like your self again. I sure hope you feel better and get your mojo back....we miss seeing you and your wonderfully done cards and more so your great sense of humor and writing skills...

    ReplyDelete
  10. That's one huge struggle Joan and I applaud you for sharing it with everyone and being so honest about it. Isn't it funny when you in the middle of feeling awful and you never think your going to feel better and you suddenly realise your smiling and not even thinking about it??! Your a strong person, I just know it and I'm sure the joy of life will come back to you. I can't help you with the appetite though, I got a cold a few months ago and lost 4 kilograms. I thought this is great and then my appetite returned.....along with the kilos....damn!!!

    ReplyDelete
  11. Good for you for being honest!! Social media is only bits and pieces and very rarely reality. Reality is: you should feel whatever you dang well feel!!! I'm hoping that once your pain decreases you'll find a bit more of the Joan of a couple of weeks ago. And if not--- take it at the pace your body and mind can deal with.
    And FYI: I binge watch Netflix every Friday night! No excuse for my endulgence except it's what I need to do to erase the week!!!Ha! Might have to check out Greys( right now I'm on House)

    ReplyDelete
  12. i too have been thinking about you and wondering what was happening - so thank you sharing your story with your usual humorous asides - i pray that you will continue to be ok with this big bump in the road - sending big hugs!

    ReplyDelete
  13. I know you don't want it but ((((((HUGS))))) praying for you!

    ReplyDelete
  14. Ah dear Joan what a lot you have on your plate. There are no words that I can think to say to help you. So just know that you are in my thoughts. Be brave, yes, but if you feel like having a good cry, just do it. Hugs

    ReplyDelete
  15. Keeping you in my thoughts. Take care of yourself first and everything else will fall into place eventually. One step at a time and one day at a time - just go at your own pace, even on the days you don't feel like moving. It's not a race, you'll gt there when you get there.

    ReplyDelete
  16. I wish you would have let me know, I would have flown there in a minute. Love you. Maggie

    ReplyDelete
  17. Wondered. Now I know. It sucks. But you manage to put the last six weeks into words, wrapped in Joan humor. That makes me happy for you. May each day bring at least one smile to your face. Better, a guffaw!

    ReplyDelete
  18. Well crap. I'm so sorry J.B. ... get better would ya? I don't like laughing at your 'sick' humor. And you're going to hate the final episode of Season 2015. Virtual pats on the back, in lieu of the dreaded hugs?

    ReplyDelete
  19. Thank you for your honesty and not sugar coating this roller coaster that you've stepped into. Valuable info that others can learn from. Happy to hear you're feeling better. Write when you can and I hope your card mojo returns because I love your cards!! Lots of love!

    ReplyDelete
  20. WOW! That's a LOT to absorb, poor thing! Thanks for sharing your story! Now I'll be freaking out about my generally ignored "no big deal" heart murmur no one's ever bothered to have an echo about - ack! I'm interested in my family history - but your "method" doesn't sound like the most "fun" approach by any means. ;-) Sorry for all the crap. Congrats on making it through to the other side and sharing your story - been wondering how you're doing!

    ReplyDelete
  21. I'm so sorry that you're going through this. But it sounds like you are getting through it to the other side. Glad to hear that your husband won't leave. I'm not leaving either, nor are a lot of other readers who consider you an important part of our little blog life. Take care, Joan. Praying for you. and your mojo.

    ReplyDelete
  22. Thanks for the update Joan....I felt horrible to be chuckling during your post...you have that way of writing! So awesome of you to share your story♡

    ReplyDelete
  23. Thanks for sharing your story. It struck a cord with me. Helps motivate me to go see the dr. Really appreciate all the info you shared. Would never had known about this if you hadn't written this post. Hope your trip can be rescheduled.

    ReplyDelete
  24. I am so sorry you are going through all this! In spite of it all, you clearly still have your sense of humor. My husband survived cancer and remains dark and twisty - I hope that won't happen to you. I hate that George died also. My personal medical degree comes from Gray's Anatomy.

    ReplyDelete
  25. Oh my goodness, Joan, I'm so sorry to hear you're going through all this!! I could really relate to you not being one of "those" people who take things well and choose joy, I'm the same kind of person (although trying to be better about it, if you've never read any of Dr. Wayne W. Dyer's books I highly recommend them, they've helped me tremendously!!) Hang in there!!

    ReplyDelete
  26. All I can say is you are amazing and so witty and real in spite of all of this! Thank you for sharing your story and keeping us posted in the fascinating way you always do. PS Good appetite is a good thing-even if it seems like a curse.

    ReplyDelete
  27. Hi Joan! I'm glad you shared this story with us. I went through a not so good experience with Hospitals, scary diagnosis, and tests after tests, and crazily, it happened just a couple of months before we were scheduled to go to Europe for a month. We didn't make the trip either. I feel for you, I know how difficult things can be when health decides to take the wrong turn. I'm the hugging type in normal circumstances, I'm not the brave one in not normal ones like this. I tend to be the "why me?" and "not fair" type, and I don't think there's anything wrong with that. We all react different to different situations. I'm glad you are taking care of your condition, and I hope it all settles to where it can be a "new normal" and you can be back to doing what you enjoy doing in the best possible way. I'm also very glad to hear you have the support you need. I had my husband's support every second I was going through the nightmare, and it helped so much. Sending a big hug, and love to you, and you are in my thoughts and prayers. Things will get better! You have not lost your spike ;)

    ReplyDelete
  28. Dear Friend, If I would have you for a "real" friend, I would be so lucky to be able to tell you just how I feel (like you just did). We put on this brave face, try and make it easy for our family and spouses but we can't always be honest. You are and tell it like it is yet, do it with a good attitude. Okay, that's all I have. Take care, glad you're better, thanks for sharing it all. One day you'll sit down and make cards again, I promise. Okay, that's all I have and this time I mean it! Toodles.

    ReplyDelete
  29. I can't even imagine, Joan. I'd put money on the probability that those who grow flowers and choose joy went through a period of time similar to yours. It's been quite an ordeal physically and emotionally. "Now" is sounding better and I'm glad for that. Yes, thank goodness for good health care.

    ReplyDelete
  30. Well, I think you are amazing and I wish I knew you in real life, not just through your interesting and entertaining and touching blog. Everything I can cross for good luck for you is crossed!

    ReplyDelete
  31. Joan~ Thank you so much for letting us know what's been going on with you. I hope we are the good listeners you need...venting is good! My DH had an ICD with no problems and the Drs. were wonderful. He complained he needed more female nurses as so many are guys now. Sending cyber flowers and good wishes and a prayer for a handsome doctor.

    ReplyDelete
  32. Wow! So much to contend with is very overwhelming, and I admire your ability to tell your story. It is a serious subject, but you still make me smile with your sense of humor. Take care of yourself and know that many are sending you cyber "hugs".

    ReplyDelete
  33. Sorry you missed your trip. Sorry about your HCM. Some days we all hate our gene pool! I am one of those people you hate who has a cup half full so at the risk of you wanting to jump through cyber space to strangle me, I will stop now. All I will say is "hang in there"! :)

    ReplyDelete
  34. Joan, thanks for sharing your story. I had never heard of HCM. Gotta love navigating the genetic minefield. Wishing you an uncomplicated rest of your recovery. And my fingers are crossed that the trip to Europe gets rescheduled!

    ReplyDelete
  35. Joan- thank you for sharing. I am a nurse and actually just heard of HCM this past summer. A friend from school's mom was diagnosed in her early 60's. She has done very well and also has an AICD. She goes around and gives talk on HCM. Give it time, it is a lot to take in. You will get your mojo back and when that happens your friends in blog land will be there.

    ReplyDelete
  36. That's a lot to go through. Hang in there! Hope you feel like stamping again soon.

    ReplyDelete
  37. thanks for the update- and keep getting stronger! Take good care of yourself-and just saying ---we have fabulous cardiologists in Boston-- come for a visit!!!

    ReplyDelete
  38. Oh wow that stinks Joan! Sounds like you are handling it in your own way and what can be wrong with that. Take care of yourself.💐

    ReplyDelete
  39. So sorry for all your stressed, medical and jerk MDs, and missing your trip. Glad it seems that you are slowly getting back to an even keel.

    ReplyDelete
  40. I just love your sarcasm & dry humor in the midst of all this stuff you're going through. I like you. Glad to hear you are getting out & eating. Sending big hugs to you, my friend!

    ReplyDelete
  41. Hey Joan B - just stopped by to see what you were up to - and I see you have been up to a lot!! I'm keeping you in my prayers - and so glad to reach the end of your story and hear that you are coming to grips with it all - you wrote a great narrative - wish it was just a story - and I'm sure you do to - keep looking up Joan B! Julia xx

    ReplyDelete
  42. I was sad to see you stop posting as much but was in my own change of life having gone back to work full time as a Kindergarten Instructional Assistant - is that smart at 53? Probably not. Finally not exhausted and started to try and catch up - and I find out your status! I'm sorry the rough road you've just been on and I am thankful that you are starting to feel better and stronger. Stay positive! I am certain that is always a good healer in itself (but don't google it!) ;)

    ReplyDelete
  43. Thanks for *choosing* to share your ups and downs and your sense of humor! Sending prayers and hopes for better days ahead.

    ReplyDelete
  44. I'm sending you my love and prayers. I think you are so very brave! Give yourself a hug for me!

    ReplyDelete
  45. As always, I appreciate how real you are Joan, in recounting your life experiences. You describe the process of coming to terms with a serious medical issue. We may hear that people choose joy and gratitude but the first steps in the process are exactly what you describe. Sending you well wishes for better days ahead! Thanks for sharing.

    ReplyDelete
  46. Oh my goodness. You've really had a lot to deal with- and somehow you still are cracking me up!
    Hope the process gets easier- and you get your energy back so you can take a break from Grey's!

    ReplyDelete
  47. As always, I appreciate your honesty and wit! I have so enjoyed your amazing cards, the stories about your mother and your fun novel, but have never left a comment. Want you to know that you are among the very best of blog land and are missed! Your health is the most important thing though, so rest and relax! Do keep us posted! Hope to be reading about your trip to Europe in the future!

    ReplyDelete
  48. My goodness. What strength and courage it took to write this all down for complete (well, nearly) strangers. I appreciate that you have shared. I, too, have a "benign" murmur - at least that's what they've always told me. I'll get it checked out just in case. No parents around to ask about family history and no siblings. Hmmm. {{cyber hugs}} to you. I hope you continue to get stronger!

    ReplyDelete
  49. Thanks for the honest look at your life..... I struggle too and I don't have HCM. So I'm glad I don't have to blow roses up and out. I'm normal, you're normal and when the creative juices return and you finish Gray's anatomy..... We'll love seeing your wonderful art! hugs from Woodsboro, MD

    ReplyDelete
  50. Thanks so much for sharing this. I now have a new research project. My brother died very unexpectedly (though I don't know if it was cardiac arrest or heart attack) and my 9 month old grandson has a heart murmur. I got the willies reading your latest update. You've given me something to look in to. I hope you are feeling better each and every day.

    ReplyDelete
  51. So sorry you're having to deal with this, Joan, but happy that you're getting the care that you needed. Thanks for writing this post and I really hope it's true that you weren't ready to "choose joy" at the moment.

    ReplyDelete

Printfriendly