After spending time reflecting upon the nightmare yet another learning experience on my journey to a new heart, it struck me that so much has happened to me since my initial hospitalization in Victoria that I needed some kind of way of reflecting upon the of the past 6-weeks. I’m not gonna lie, what follows is an account of what happened over my 6 week
spa hospital stay and is not for the feint of heart (pun intended) but I promise it will blow your mind. My mind is still blown. I am not the same person. Like Khaleesi, I have risen from the ashes (Ha! I wish I was the Mother of Dragons!) and am definitely hard to kill. 🙂
March 5, 2014 Inotrope Vacation begins in Victoria at the Royal Jubilee Hospital to help my heart beat stronger. Unfortunately my heart does not respond to medication.
March 10, 2014 Transplant team meets, decides that in order for me to maintain a relatively good quality of life, and to make sure I actually make it to transplant, Left Ventricular Assist Device (LVAD) surgery is necessary. Heart pump here I come! #PimpinMyLVAD
March 12, 2014 I am transferred, via Air Ambulance with Critical Care EMTs, Chris and Chris, to escort me from the Royal Jubilee Hospital in Victoria to St. Paul’s Hospital in Vancouver. Despite my imminent surgery, the scenery was not that bad.
March 13, 2014 My surgeon, Dr. Cheung, recommends that we wait through the weekend and that my LVAD surgery be scheduled for the following Monday. His rationale for the wait is that when organs become available most often on the weekends. #whoknew #transplantfact No heart comes.
March 17, 2014 LVAD Surgery. Scared? There’s no crying in baseball. Near death experience = 1 #WorldSeriesOfHearts
March 18++, 2014 Narcotics. LOTS of narcotics. Although they helped with the pain in the small sternum incision and from the mini thoracotomy that were a part of my surgery, they were particularly effective on the drainage tubes coming out of my chest (owee!), I should mention here that I suffered severe side effects from the LVAD surgery related to the functioning of my colon. Unbeknownst to me, this would have serious repercussions over the coming days. #ShitMyColonSays The plus side is I’m officially bionic; batteries and all.
March 22, 2014 6:30 PM While visiting with family, I received my first ever shock from my ‘built-in’ defibrillator (Implantable cardioverter-defibrillator; ICD). My heart decided to go into a funky beat and my ICD shocked it before it could stop. Near death experience = 2
March 23, 2014 09:30 AM While quietly starting my day eating a ‘delicious’ hospital breakfast, I received a SECOND shock from my ICD to stop another irregular heartbeat. This is just the beginning. Near death experience = 3
March 26, 2014 10:00 AM. Dr. Cheung is optimistic, as all surgeons are, that I will be able to go home on Friday! Yay! We are all very excited.
March 26, 2014 9:10PM I started FILLING toilet bowls and other hospital receptacles with blood… from my Ass. There is really no nice way to put this. There was a lot of it, it was VERY smelly, and it would not stop. I think I had 9 bags of blood total by the end of the night; 2:30AM I arrive in the Catheterization Lab where a Vascular Surgeon performs an embolization on a blood vessel that is the source of the severe intestinal bleed found in my Cecum. During the embolization the surgeon used two ‘coils’. Near death experience = 4
March 30, 2014 9:00PM While attempting to prepare for my colonoscopy I had to swallow this drink that tasted like Pez. Funny thing is it’s called PEG. Oh, and did I mention I was supposed to aim to drink 4 LITRES of it? I managed to get through 2 cups before my GI bleed began again with a vengeance. I think I had another 4 bags of blood this night too. So…..12:30AM I arrive in the Catheterization Lab where a Vascular Surgeon performs an embolization on a blood vessel that is the source of the severe intestinal bleed found in my Cecum. During the embolization the surgeon used two ‘coils’. Near death experience = 5 #groundhogday
April 2, 2014 12:00PM After finallyColonoscopy reveals a 3cm ulcer in my Cecum with no other abnormalities. Drs takes a biopsy of the ulcer. #goodtimes Drs. are baffled – this type of ulcer so high in the intestine is ‘rare’. Awesome. I love being rare. #iamspecial
April 3, 2014 Released from the Cardiac Intensive Care Unit (CICU) back to the step-down cardiac ward, 5A, for recovery. Yay! Home soon!
April 4, 2014 10:30PM Apparently some genius nurse gave me a blood thinner (plavix – taken orally) and since I JUST HAD TWO GI BLEEDS AND A BIOPSY … I started to bleed. Again. SO… #groudhogday but this time it was different. I started to slur my speech, couldn’t stand up and got a low flow alarm from my VAD (which is really bad news). I damn near passed out because of low blood volume. More blood! General Surgeons want to remove part of my intestine. Uh…… NO THANKS! Thankfully it stopped on it’s own. Back to the Cardiac Intensive Care Unit (CICU)! Near death experience = 6 #groundhogday
April 9, 2014 Drs agree I am well enough, again, to be moved back up to 5A from the Cardiac Intensive Care Unit (CICU). However, the charge nurse at the CICU disagrees since I have already been up to the ward and had to return after only one day. So, I stay in CICU, recovering in relative peace. #ithinkihaveearnedabreak
April 14, 2014 Released from the hospital directly from the CICU. 3,542,400 seconds; 59,040 minutes; 984 hours; 41 days; Almost 6 weeks! FREEEEEEDOM!
April 17, 2014 First day at Healthy Heart Cardiac Rehab.
May 5, 2014 8 Months on the transplant list. Still waiting but….. #PimpinMyLVAD
Time in hospital: 41 days
Near death experiences: 6
Bags of Blood: >15
New bionic woman not going to let this shit take me down: 1
May 6, 2014 @ 9:10 pm
Dear Jillian, Thank you so much for sharing your account of the struggles and triumphs over the last six weeks in the hospital. I just want to give you a big hug and make everything okay! Thinking of you, missing your smiling face (and wicked humour), and hoping there are no more setbacks. You have definitely earned a break, my friend! Are you going to be staying in Vancouver for a while, or are you coming back to Victoria soon? Natalee xo
May 8, 2014 @ 7:49 pm
Natalee – Thank you for reading and being willing to post a comment! I miss laughing (and maybe working!) with you. An extended break is definitely in order but that doesn’t mean I am letting you off the hook for tea! 🙂 J
May 7, 2014 @ 2:20 pm
I just wanted to send you a note to wish you well and to say WOW! You are an incredibly strong woman both in body and in spirit. So many people would let what you are going through bring them down. You on the other hand are facing it head on, with amazing strength and grace. I also want to let you know that although I haven’t written, I read your posts all the time and think about you and remember the fun person I always visited at MacEwan when I needed ideas to make teaching better. Many people still remember you at MacEwan and send their thoughts and prayers to you every day. Take care and I hope that a heart comes for you soon!!!!
May 12, 2014 @ 1:33 pm
Cynthia – Thank you so much for your message, thoughts, and prayers. I always smile when I think of you – such energy!! Please tell everyone at MacEwan I am doing well and once I get my heart and am allowed to travel I will come back to Edmonton for a visit. Our families are all still there so we will definitely be back!
May 8, 2014 @ 11:03 am
Jill, my god-daughter – you are an awesome person. Every time ou have a set back you just put your head down and plough through. Just like a ragging bull. I know you have your ups and downs but you always end up on the up side. Hoping you are are with your babies very soon. Love and hugs from all the Faragini’s. oxoxoxoxo
May 12, 2014 @ 1:34 pm
Auntie – much love to you and Uncle Jim. It was so nice to see you when you were both through Vancouver. I hope to be home soon. xoxoxo
May 9, 2014 @ 7:52 am
Thank you for sharing your heart and soul journeys. You have been through so much. I have so much admiration for all of your strength and determination and positivity. You have people all around praying and sending positive wishes your way. I am one of them. I wish and pray all the best for you and your heart.
Julie Steffes (Stinson)
May 12, 2014 @ 1:36 pm
Julie – Your prayers and wishes mean a lot to me. Thank you for commenting and know I am sending you hugs in return. xo
May 12, 2014 @ 5:36 am
Good grief! Thanks for this gripping blow-by-blow recount of your journey to a new heart, Jillianne. I’ve been thinking of you and keeping my fingers and toes crossed for a positive outcome. You have now officially surpassed your lifetime quota of traumatic events and deserve a !#@$%!! break!
May 12, 2014 @ 1:37 pm
Carolyn – Heart Sisters Unite! I will NOT go down without a fight! ;0) I am hoping that break will be soon… at least for a little while before my new heart decides to arrive. Thank you for your thoughts!
May 12, 2014 @ 4:39 pm
What a trip you are on… remember it is the journey and not the destination. I am still recovering from seeing you get your first ICD shock and Nick, your mom and me jumping over one another to get the attention of a nurse. Geez… To see you joke and smile after that incident was truly remarkable and inspiring!!! We can’t wait to see you and Nick this summer (outside of the hospital). Take care.
Chelli-man et famille
“Only from the heart can you touch the sky.” Rumi
May 12, 2014 @ 8:02 pm
Jill, your strength is so admirable. We had heard you had been in the hospital, but had no idea the extent of what you were going through. So glad you are on the mend and back home. Big hugs from Luke and I and sloppy wet kisses from Quillan. If there is anything you ever need (and I mean ANYTHING) just let me know. XO
May 12, 2014 @ 8:52 pm
Jill, it is amazing to read what you are going through and the courage and strength you show. I remember little Jill, playing outside, having sleep overs and playing ” wars ” in your basement (Sorry Judith) I know your heart will come, and you will be living a vibrant life again. I’m in Seattle now, so close and hopefully one day we can visit and remember the old days, and look forward to the new. Take care, stay strong and positive!
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August 24, 2014 @ 12:46 am
Thank you for sharing your journeys with us, I too relate with the whole “rare” situation. I am currently being tested for cardiomyopathy, I say it generally, because of course, why be tested for a specific kind when you can have 1 of 3? 2 of which never cause the heart to grow or the walls to thicken -lucky me =D-.
Your outlook on your unique experience makes me smile, not because I am happy to see you endure such pain, but because it gives me reason to look at all of these “unique” experiences with a smile. If I ever require a transplant or an LVAD I will surely be just as unique but can only hope to have the same mindset as you.
August 24, 2014 @ 11:12 am
Thanks for your kind words Stephany! As hard as all of this is, and as you know there are days that seem impossibly long, its much easier to live them happy than to live them sad and miserable. So … that is a choice us ‘rare’ beauties need to make. I hope beyond hope that you do not need an LVAD or a transplant, but know that if you do that hope still and always remains.
Hugs to you my heart sister!
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