Tuesday, December 24, 2013

venting

I just need to vent today.
I'm frustrated with the health care in this "town".
I have been in pain since Saturday.
Ok, let me start by saying, I experienced the regular post-op pain for the week that they told me it would last. Then I was pain-free for the second week. There was discomfort, but not enough to take Tylenol. My body is readjusting but it didn't prohibit me from going out, doing Qi Gong or just living.
Then on Saturday it reappeared shooting up my (left) jaw into my ear. I know that to not be a good sign, so off we went to the ER, the eve of ma belle's birthday. We actually ended up spending the first few hours of her birthday in the ER.
Replay of last year?
They did an ECG and cardiac enzymes tests only to rule out an MI for which I didn't suspect. This was new pain. After that they looked at me and said they couldn't really do anything else as they weren't familiar with my implants/location so they told me to call Toronto (for which I was going to do anyway) and go home. Yes, they discharged me without even doing a CT scan.

On Monday I called Toronto for which my expert-doctor. was very upset that they didn't call her (them) themselves. When she asked why the congenital on-call team was not called for referral I told her we didn't actually have a congenital on-call team. We only have regular cardiologists. Which, really don't know anything about what I have an approach me like I'm an "acquired heart disease". Some things they give run-of-the-mill cardiac patients will do great harm to me (like nitro, don't give me nitro).

Back to the past few days. Toronto doctor called the heart hospital here and ordered a CT scan so I went in last night. So far, the chest reading shows no collapse, closure or movement. They have yet to read the neck area (where the bulk of the pain is).
I await the news.

Knowing my body the way I do, they won't actually 'find' anything and this will go unexplained.
Did I mention yet I am officially tired of being unique?

The CT scan was done at the heart-hospital and not the ER. I was in the day unit, where a few of the nurses I had last year thought they recognized me (I stayed 17 days, I and my blue streaked hair are memorable). I confirmed and added that it was "a year ago today, exactly".

Can I have one "holiday season" (ma belle's birthday) without any medical problems?
Waiting for the CT scan last night while partially drugged up on Benadryl, I felt the "last straw" break. It's been over a month of being mostly in hospitals (the week of no-pain at home I was still in out-patient clinics for all of my post-procedural follow-ups). I would like to go somewhere on my daily outing that doesn't involve an over sized cotton gown.

Luckily I have a date set with my wonderful cuñada for Swan Lake. I'm already wondering what I will sew up for it. I'm so excited to go see dance again!

Alright, venting done. I feel a bit better (extra-strength Tylenols have kicked in). Time to get a move on.

Sunday, December 15, 2013

19 days!

Nineteen days.... I beat my last hospitalization record. Last December & January I spent seventeen days in my home town's heart-hospital and came home with palliative care. After nineteen days in Toronto, I arrived home one week ago with 2 implants, a new congenital cardiology team and most importantly, MORE time.

My congenital illnesses are not cured but I was given more air. I am more mobile, my heart feels better and my lips/fingers are not longer dark purple, though I am still cyanotic.
I have a plethora of stories to tell and unfortunately while I was living it, I did not have an adequate keyboard. iPads are cute, serve their purpose to keep connected, entertained and give me a soundtrack in which to motivate me. The soundtrack also served to give me tunes to dance to the first moment I was able to get out of bed and wiggle my butt, expand my newly inflated lung to Titanium and Roar. Yes, I don't have the best taste in music, but my taste gets me through.

Where do I start? How about with my upcoming appointment with dr. cardio man this week. We both know this will be our final appointment. I am firing him and have asked my Toronto team for a new referral. The young cardiologist I will likely be moved to isn't much better than dr. cardio man, however I need a new approach. The "wait and see" or the "I can no longer treat you (but haven't thought to refer you to someone that could" approach is no longer working for me. I fought for 10 months for a referral under the guise of heart/lung transplant assessment to get my second opinion. I got it and much more but exactly what I dream of. Even the night before the procedure I called home to my cardiac nurse practitioner. I was hesitant that perhaps what I was about to let this team of world-class cardiologists do was a bit too experimental to be wise. I called despite fearing my CNP say "oh, it's too risky" and at the beginning of the conversation she did allude to that. She stated that the home team couldn't understand what they missed. They poured over all the tests I did last year. When I told her who the doctors were, after she asked who was performing the procedure, she said I was in great hands, that they work on babies so I they will be able to maneuver through my collaterals. It wasn't until we hung up that I wanted to ask if she had know about that team, and their fairly new procedures (less than 8 years old), why did they never send me there. I asked when I returned home last week. Response: it's outside of our scope. Then refer out!!

Either way, it's over. They know what I'm made of. I know what I'm made of. The team in Toronto doesn't want to lose me and I don't want to lose them. I discovered more about the illnesses I have. I have much more than Truncus Arteriosis. You can add VSD, bilateral shunt, tetralogy of fallot, pulmonary hypertension in my left lung, and no pulmonary arteries. I learned a new term about me, MAPCA. They stented my right MAPCA (since I have no arteries).

The human body is incredible, how it just makes up for what it doesn't have, what's missing, so that it will "function" (however you define function).

I am not out of the woods. I have been doing my breathing exercises, coughing, to avoid lung collapse in the first week of my newly opened right lung. Though I rarely feel the stents now, the first week I was continuously on Tylenol for the pain it created. The new hard-core blood-thinners have tome wicked side-effects including bottoming out my BP. Eighty over fifty is my new norm which makes me light headed and not yet able to drive. In my follow-up visit with my family physician (my last home visit) last week, I made her a deal: if, when I'm deemed well enough to go back to work, I want my licence back. She giggled and said of course. She is an amazing doctor and I'm so glad to have her as a family physician. When she received the fax about what had happened in Toronto, she was beside herself. She still doesn't understand why and how I wasn't referred out. Because cardiology isn't her focus, she didn't know that what they did for me could be done (or I'm sure she would have referred out). Everything ahead of me is unknown, including the ability to go back to work. After-all, I am still living with supplemental oxygen. I still need it to live but I am also determined to change that. I asked (demanded actually) a referral to cardiac-rehab to condition my lungs/body into better oxygenation. I visualize me getting off it perhaps by my birthday even. I don't even know if it's medically possible (no one has told me this) but for me, it's possible. I sit here on half the oxygen I needed a month ago and no one (in this town) said it was medically possible, so I'm not one to take no for an answer.

I am so grateful for my tenacity.

Tuesday, December 3, 2013

24hrs

In 24 hrs I will know more. In 24hrs the procedure will be done and I should be in CICU (cardiac  intensive care unit).
I am nervous yet calm.
I cannot believe I'm here yet super excited that I am a fighter. Tomorrow night you should hear me ROAR.
I think back to all that I was told, all that I've been doing to prepare for death. I learned a lot but also lost lot: a car, a job, a license, but I never let go of living.
I keep thinking about a quote I love so much from a fictional tv character, House, " almost dying changes nothing, dying changes everything". Yup, it does.

I called my cardiac NP at home to tell her what was going on and, though I feared her scaring me, she actually said I was in excellent hands. This is a top paediatric congenital surgeon. At the most basic level, I hope to survive. Their hoped for outcome (and mine too) is icing on the cake.

2nd opinion gives a choice

Oh my oh my oh my!!!!......
I have a procedure Wed.
THIS is my 2nd opinion!
It's not a cure but we hope some airways will open a bit.
Excited but worried. Have already been beaten up (allergic reactions, new pain, retriggering old conditions once thought treated).