Let's just get into my story because I KNOW the last thing any of you ever expected to read about was me, but it's time to tell people. It's been long enough. I'm going to nutshell it best I can: I have a serious heart disease/inflammation that has metastasized to some of my organs.
April 2013 - diagnosed with LBBB - Left Bundle Branch Block (http://lifeinthefastlane.com/ecg-library/basics/left-bundle-branch-block/
) - was told after many tests that in the far, far, far future I MAY need a pacemaker.
April 2015 - 2nd degree AV Heart Block (found & reported it myself while working out & then I got the ball rolling with many doctors along with being 911'd to hospital 3 x/month). The perks of being a personal trainer - I understand & know how the body works. My heart was Not working right with exercise & I jumped on it.
May 22, 2015 - ICD placement (pacemaker & defibrillator surgery).
So you understand - my arteries are pristine. This is All an electrical/wiring problem. My conductive system sucks!
Feb 2016 - signs of heart failure. Heart meds were tripled (beta blockers). Made huge difference (I had become breathless with stairs/little movement).
May 2016 - Was diagnosed with 'presumed' cardiac sarcoidosis on my heart (on the heart is very rare - usually it shows on lungs & goes from there), spleen, lungs, lymphnodes, stomach. The reason I write presumed in quotations is because once the PET scan was finally done (that's another story that doesn't need sharing; just know that they thought I had cardiac sarcoidosis last year but nothing was done until I started getting worse & had to start calling doctors again!) there still wasn't a biopsy done to back it up. The reason no biopsy then was because they needed to move on treatment for me asap after seeing the PET scan & 90% it was cardiac sarcoidosis (sarcoids for short).
Along came my friends (And here's my Sarcasm :-)) - Prednisone (steroid) & Methotrexate (anti-inflammatory - Mtx is the one drug Tessa was allergic to during her IV chemo treatment). I have been on these meds plus many many more meds (due to side effects of side effects, etc) for 4.5 months. A repeat PET scan done after 3 months of treatment showed some signs of resolve (lungs, lymphnodes & stomach), but unfortunately not in the heart & spleen (my spleen pain has returned substantially over the past 2 weeks). A PET scan is a radioactive scan (radioactive sugar tracer) which will highlight the areas of interest. So now they want/have to get tissue to find out if this is sarcoids for treatment. 90% it is.....I'm not crazy about % if you know our family (Tessa & I both seem to do everything rare). I'm still on the same treatment plan right now. And if you know anything about steroids, my appearance (face) has changed considerably (round face comes with prednisone), BUT I'm still alive. I'm also limited in what I'm allowed to do physically now as my heart is very sick. I was given my limitations back on June 1/16 when I started my treatment.
Sept 2016 - a heart biopsy was performed (yes, risky). They got 5 samples & unfortunately did Not get 1 sample of diseased tissue! Only a 30% chance they'll actually get tissue they need & yep, they didn't luck out.
Sept 2016 - Endoscope - I experienced bad side effects from meds so they wanted to check to make sure esophagus & stomach were ok. 2 biopsies were taken from stomach. Results later this week but they were pretty sure it was just gastritis.
Oct 25 - I am scheduled for a biopsy of my spleen (not looking forward to that as it's very invasive & I have so much pain there already, but it has to be done) - TO General (my team is here & at Mt. Sinai)
Oct 26 - thyroid biopsy - Mt. Sinai
If you've kept up with Tessa's CB you know that T & I toured for the past month for her role as the 2016 Terry Fox School Poster Girl & that didn't affect me in anyway but for the Positive. It kept me Happy, Engaged & pre-occupied while I was awaiting other tests. I'm tired lots, but that's due to the many medications that I am on as well.
As I've always said through Tessa's journey (& still do for her), Never Never Never Give Up! And I won't.
Now that it's all out there, I welcome your hello's & support. I'm a private person re: my health, so this is the easiest way I find to let people know how I am without worrying about responding to emails, texts, calls, etc when it gets to be too much (at times). Last week was probably the hardest week I've experienced thus far (since learning of the latest on the heart biopsy) - I cried a lot! I mean a lot!! Not 'why me'....just frustration.
Oh, there's another reason why I was crying which I forgot to mention.....my EP (electrophysiologist - surgeon of my ICD - I go to the pacemaker clinic regularly (Scarborough) for dialing in, checking my device if I've had any alerts, check battery life, etc) - I was told that the ICD that had been implanted in me, had a recall on its battery. Yes you read that correctly. It's less than 1%, but the ones that are defective are short circuiting & depleting in their battery. I found this out last week on the very same day I received the news of my heart biopsy failed results. So what does this mean? I'm going back to my EP tomorrow in Scarborough (I/we have been travelling so much back & forth to TO for all of my apptmts since May; just when Tessa got extended to 6 month apptmts, life decided it was my turn) & we're going to chat some more. At first I was 'get this out of me & put a new one in!! Then my 2 & I talked (along with listening to advice from my EP, who said he would perform the surgery if I wanted, but to really think about it; risk of infection now that I'm on immuno-suppressant drugs). I have a vibratory alert in my chest that will sound off if my parameters are off & I can get a home device to monitor me etc. Things to talk about. My life is not always at home so we have to think about this. But with 6 years of battery life left, he has a point. If we can make sure I'm covered safely (esp with where we live) then I shouldn't jump at surgery for that %. I thought I would worry about it every minute since he told me last week, but I find I am still like I was once the ICD was put in last year - I don't think about it. Otherwise I'd never be able to live cause it's too scary a thought. I live my life & I live it the best that I can. The past 4 months have been the scariest for myself health-wise & none of us knows how long we're here for, but when you've been given this kind of health, nothing you can do but keep going best that you can! I plan on it!
OK. That's my nutshell. From now on it will be journal entry's. I welcome your words of support! If you can, don't just read it & not tell me you read it. I would Love to hear from you. I would appreciate that. That's what this website is for. Keeping loved ones in the loop (by me) & then in return you showing me. I am sorry that you have to read this about me after everything you've been there for our family for Tessa 4.5 years ago. But this is our life. So many of our friends say 'Why is one family given so much!?' No idea! But same as what I said when it was Tessa....there is nothing we can do with this but move forward & to keep on going. NEVER NEVER NEVER GIVE UP. I thank my 2, Rusty & Tessa & my friends for being my family & being there for me. You are the greatest!