Tuesday, December 24, 2013


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


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).

Saturday, November 30, 2013

In Toronto!!

I'm in Toronto for testing and I've been here for over a week now. actually, Monday will make it 2 weeks since I have not slept at home.
I don't really have the means to type a long entry since a smart phone key board is not ideal and I'm only just getting used to my Hannukah gift, an iPad mini.
There is of course, so much to write, but limited fingers.
More later.

Wednesday, November 13, 2013

Partial Bucket List

As you all know, I'm waiting for a bed at the transplant assessment program in TO. Things are moving along slowly and with the bed shortage they've actually given me the go-ahead to complete some tests in town. Ironic since I advocated for that months ago and they said no. What a quick turn-around. It's so that when I am transported to TO I don't have to spend a week there. They also don't have the luxury of giving me a week's worth of beds. Because I'm a curious person I asked about the particulars of travel: land or air. Will my support person be allowed to come or does she have to make her own way there and find the hospital in that crazy-packed city. The answers I wanted to hear is what I got. That is, if it's an ideal situation. First choice is to travel by chopper to TO, with my sister. Of course, if there's no room, or there are a shortage of choppers that day, it will have to be by land. I started getting very excited. I figured, if I couldn't helicopter over the Grand Canyon, I could take part of the bucket list item off: a helicopter ride. I realize Lake Ontario is not a big deal but this is all I have left, so I'll take it.
Anyway, as I researched how long the ride is and the service I would be using, my excitement whittled away. I found newspaper articles outlining recent scandal, crashes and deaths. I'm not overly confident anymore until I realize I don't have much life in me anyway. So far, getting back into my spiritually-based routine has helped my nerves. I don't feel as anxious about this and have confidence that everything will turn out as it should. No matter what that "should" will be. The reality is, everything and everyone dies. Everything in between is what counts.    

Sunday, November 10, 2013


I'm spreading myself thin these days, like jam. There is a distinct difference between spreading oneself thin in the rat race and spreading oneself thin while under "palliative care". Currently I feel that being "all over the place" is quite healing. My interests vary right now, I spend parts of my day doing different activities but am content, nourished and rejuvenated. I wish this could last forever but I also know that I'm blessed to have what I have as most people, myself included when I was IN the rat-race, didn't have time to do the things they loved and see the people they really loved. I am fortunate to love and be loved by many individuals. I also recognize who is nourishing and who isn't. Just because mutual love exists, does not mean it is holy/wholly satisfying. I don't have tolerance for gossip, talking about or hearing about others' drama-filled lives. When I spend time with people, I want to know about them, their dreams, ideas and thoughts about the depth of their soul. Those who cannot journey there are still loved, however shallow the friendship may be. It often results in painful distance but the drama when I do allow it in my life is more than I can tolerate. It's a case of the lesser of two unfortunate circumstances. I've learned the hard way that you cannot change someone else, only yourself. Rather than attempt at changing how others behave around me, I strive at keeping my environment drama-free. It is my sanctuary after all. So I choose to spend my day in creativity.

I have come to appreciate the solitary time I have at home. Though I often go through bouts of loneliness, I cannot visit with people very day. I need time to sew, to write, to read. I am reading again (my concentration is back somewhat). I am still sewing for the children in my life. I am actually craving sewing for me again - though I often feel that it's pointless. I often think "I'm not going to need it where I'm going so why bother, it's just one more thing for ma belle to have to dispose of". I will be sewing myself a few heavy-fabric winter dresses. One piece to pull on, wear long-underwear underneath and I'm good to spend a couple of hours in the kitchen after my morning readings, meditations, sewing, beading or painting time. Cooking from scratch was a chore about a month ago but now that autumn has arrived I'm rediscovering the sweet pleasures of stews, and Mexican cooking. My cuñada and my trips to Mexico have inspired me to revisit the food I love so much. Though a heart patient, I realize I was fortunate to visit Mexico, not once but twice in my lifetime. It's a beautiful place with diverse culture and amazing food. In the depths of loneliness or depression Mexican (inspired) food will bring me back to life every time.

Anyway, enough about Mexico, I am happy to have the craving to paint again!

Thursday, October 24, 2013

now what?

There's a little someone that's kept me going for almost 10 months. He was born today. I have yet to see him and am excited to see the next generation of my family. I am also feeling a bit apprehensive and wondering what I will be holding on to next to keep my claws locked into life on earth. My health has been slowly, very slowly declining. It isn't that noticeable to regular folk. I'm still smiley and seemingly doing as much as before but I am also sleeping more, eating less and having more weird fainting spells that have nothing to do with blood-pressure, or pulse-ox (we measure everything). It's starting to feel like I was last spring when just washing and feeding myself consumed most of the day's energy. My mind is still full of creative projects but my body no longer has the energy it had during the summer months.

Of course I will continue to sew and knit for the little Monkey. Not being able to sit in my serenity garden is becoming hard. It means that I'm locked in the house for the most part. I am still able to go out once in a while, mainly to family as they are less than a few kilometres away but even that will eventually come to a halt because the cold air is painful on my lung and breathing.

For now, getting to know Monkey will have to be it.

Wednesday, October 9, 2013

great phlebotomy = hope

I just had the best phlebotomy ever! I'm glad I made the decision to go to the day unit to have it. The alternative that was offered to me was to have it at home. Being on 12 LPM always involves a lot of logistics to leave the house. I'm fortunate to have such a helpful spouse who's workplace is a bit flexible at the moment. I decided not stay in the comfort of my home because the vampires have usually had difficulty with my veins. If at home, there's no back-up staff to try again. At the hospital there's always someone who can 'get a good vein'. Today's phlebotomy was almost a cake-walk. (They're not a big deal for the normal human being but after a life-time of medical issues, it's just one more annoying thing to have done to my body.)

I think what really helped was the power of the mind. I chose to see this as a treatment, for which it actually is. I visualized the relief of fatigue and headaches I've been experiencing. It also helped knowing that this was the least of my medical worries to come. In preparing for transplant assessment I read the details of every single test required. (Ugh.) Some of them I've gone through before, as a child, and they were traumatic mainly because I was never informed about what was happening to my body. Some of the tests are incredibly outrageous. The amount of radioactive dies that will be pumped into my body is a little disconcerting. It was all so much to take in that I thought to myself "I can't do this; I can't put myself through some of this stuff I promised myself when I was 13 years old that I will never do again". So, for some reason I emailed the longest living heart-lung transplant recipient in Australia. I did it not expecting to hear back. It has been my experience that a bit of fame disconnects you from people. I've emailed Hélène Campbell at least 4 times since I returned home from the hospital and each time I get a generic response from her publicity team. So much for 'being with the people'. Surprisingly the guy in Australia replied, within 24 hours! In a nutshell, he wrote about belief. He wasn't talking about religion, but about our mind, what it can visualize and the tools he used to get through. All of the beautiful things I know and have taught others and have used at one point or another, but seem to disappear when I face my own medical PTSD. Here again, science and spirituality come together. This theme keeps repeating itself. Another long-time friend of mine and I also chatted about this. She's a scientist, of the hard-core kind: doctorate and all. Though I haven't seen her in over a decade due to our global moving patterns, I really cherish the continued 23 year friendship. I really respect her wisdom, education and most of all, her personal experiences. She really knows her stuff and it's comforting that someone else gets it: that science and medicine are powerful, but so is the science of the mind, belief, attitude.

As I prepare for TO to be ready at the moment's notice when they call with an available bed, I remember to pack my motivational authors and courage and the knowledge that I am in charge of my body and at any given moment I can say "this is the off ramp" if I can't finish the tests. People have the right to their personal opinions, but not to judge. They don't live in my body and I thankfully, don't have to live in theirs: it's already taken a lifetime to get to know this body, as damaged as it may be. It has carried me this far. Let's see where it can still go.

Sunday, October 6, 2013

Imagine the hardest decision of your life...

I had a dream last night, that I was in Toronto for testing. I can't recall the particulars, but I do recall the tests came out favourable for double-lung & heart transplant candidacy. I recall the dream being surreal, difficult. I woke up realizing this is one of the reasons I've been fearful of going for testing: what if I am a candidate? A while back I tried picturing myself making a decision and I couldn't. This decision is about more than just adding extra years to my life, should I survive. In essence it's about choosing how to die.
Think back to the hardest decision you've ever had to make. It could have been about what house to buy, what school to go to, whom to marry or not marry. It could have been about making the decision to pull someone off of life-support. All equally tough decisions.

Now, imagine for a moment, being given the opportunity to decide your own death. Stop, think. Breath about that for a minute. Choosing how to die. Note that I didn't say to die or not. At this point, death is inevitable (it is for all of us, eventually). Suppose you are in the prime of your life, your career is taking off, your family of origin is finally coming together, a child is being born in your world. Your marriage (or love life) is optimal. You have everything you've worked so hard for; everything you've always wanted and didn't think you wanted.

Now, after picturing all of what you have, imagine facing choosing death. Do you die, surrounded by all that you love, or do you try for more, and risk dying alone - away from all that you love. The risk of dying alone is so high it almost seems like an unwise choice, but the reality of a shorter life is inevitable.

In the spring when I shared about transplants as being a treatment option, many people around me didn't quite understand what that entails. They didn't realize that 2 lungs and a heart is one of the most rare and complicated transplants done ever. So rare that Toronto conducts on average one per year. Statistical outcomes and life-expectancy are also very poor. Last week my cardiologist put it this way: dying in a  post-op ICU in a foreign city without family and community around is, of the 2 choices, the most horrifying death that he wouldn't even chose. The post-op pain from that kind of transplant is apparently too much for most. It may be for me too. On the other hand, my cardiologist also said that this is the only treatment possibility, otherwise there is nothing else.

Given that I am not ready to go, I am utterly confused in what to do. For a few months I decided not to go for testing, believing that I wasn't even stable enough for the 5 hour-ambulance transfers. Having been outside in the 'real world' on occasion, I've changed my  mind and decided that I won't know unless I go. I am not looking forward to the week of testing. Some of the tests are not pleasant. When I think about voluntarily putting myself through the tests, I realize, if I move forward, I am voluntarily putting myself through my body being ravaged. For what? At best to wake up in an ICU alone and have my body reject both the lungs and heart? To have a successful surgery, painful long recovery only to live 2 more years (1 of which I still won't be able to travel).

I reflect in silence. My (O2) machines are off today and I'm using a large, quiet back-up. I haven't heard this kind of silence in so long. It's what creates fear. Fear of making the wrong choice, fear of having to choose my own death. Fear of being alone at the point of departure.

I already know that I am also very blessed to be able to have this choice at all. Who gets to choose that? Not many people get to choose home where I live, love, learn. I know the beauty in all of this on a highly spiritual and detached level. As a human being who's not yet ready to go, who's very much attached to all of her loved ones, close and casual, I cannot sit in that blessing today. I only feel the silence of the worst decision I've ever had to make. Some moments I travel back to last year (2012) and can't believe that life as I lived it out there is over. It's crazy the difference a year makes.

As for the worst decision if my life: in the spring I decided that my decision would be not to make one which by default, meant to not pursue transplant options. Just for today, that's no longer good enough. I will pursue as far as my courage or medicine will take me. Until then, I keep keeping busy for fear to losing it in this surreal life of mine.

Saturday, September 28, 2013

ma mere/my mom

It hadn't dawned on me how challenging the past 28 hours were until I heard ma belle describe it to her parents. My in-laws/belles-parents are visiting this weekend. My mom was supposed to come over to 'have tea' with her mom as they seem to get along and have had an email relationship since the families merged through marriage (oh les Française !). My mom couldn't come today because she had a pacemaker put in late yesterday afternoon. Originally I wasn't worried because I have every confidence in the Heart Hospital she was in - of course, it's the same one I go to. They are routine procedures and dozens per week are performed. She even returned home late last night. I visited this morning and she looked awful. This fact, and other details, are what ma belle shared with her parents. It really bothered me and let her know that it was private. I reflected on why I feel so defensive of my mother - me who will share details about anything - and realized that I wanted to protect her dignity. My in-laws, despite being related, didn't need to imagine her in a weak state. I am my mother's daughter and we both have a hard time asking for help. She certainly didn't want to bother any of her children so I'm very glad that when I called her after my morning meeting I decided to 'pop' by despite her saying she was okay. When we got there I could see the pain in her eyes but also the gratitude.
It's really affecting me as, it's late in the day and I've tired myself enjoying my in-laws. It takes a whole lot of mental energy translating French all afternoon and though I understand it fairly well, at the speed and rate they speak it, it's amazing I catch most of what's said. Then to contribute right back is no small effort. So, as I retreat back to English land, the intimacy I shared with my mother (her letting me help her) is hitting me profoundly. Here I am, all tubed up, with months to go, helping my 72 year old maman and I feel sad I can't do more.

Tuesday, September 24, 2013

Negative atheists

There are times when close loved ones are not the people to turn to when you're in turmoil. When you're a palliative patient, everyone suffers, especially the loved ones. So who does one turn to for help with the biggest decisions that will ultimately affect yours and their lives? A neutral ear, a therapist, they are not helpful either.
Sometimes loved ones are pulled and stretched in supporting the ill but they need their own support. I used to like to think I was the pillar holding up my partner but I can't be that anymore and her pillar has crumbled down. It's exhausting caring for 2 people in a marriage when only one can take care of all the physical (errands, laundry, cleaning, shopping, dishes, etc. etc.).
I work so hard at being positive that it also becomes tiring. Sometimes I'd like a refuge to feel sad a little bit but when that makes others' sad, it's difficult.
I know I'm no ray of (constant) sunshine but in my conscious attempt at being positive I find I'm becoming more intolerant of negative people around me. I have a friend who, thought I love her dearly, every time we get together (or on messaging for that matter) she will always throw out a negative criticism. Just once I'd love to challenge her to one visit without the negativity. I won't ask though because she believes she's a positive person. When I challenged her on it a few years ago it was met with anger. If only I had a tape-recorder.
Then there's the other acquaintance who's a staunch atheist who has to put down anyone and everyone who thinks differently than her or her science articles she puts in her FB feed. I wonder if she is somehow making up for her own lack of intelligence by hiding behind other peoples' research. She claims to be a know-it-all yet only has an undergraduate degree, not even in science. I am irked by this because whenever I struggled (months earlier) with the transplant issue she used a numbers approach. Her attitude was 'well, you could choose death' forgetting that that's the end result of the whole thing. Period. To her quality of life is not something to consider. She's very much a quantities person. Here I am "bitching" about her so I decided to delete her. I am so tired of being beaten over the head with a journal article. Her behaviour has been as bad as those fundamentalists she complains about: hitting people over the head with the bible claiming it's fact. Well darling, a journal article/study may be fact but it's not infallible. Fundamental atheists are just as bad as fundamental religious people: being disrespectful of each other, critical and resorting to name-calling!
As you've discovered from me dear reader I'm not "Religious" or even believe in a 'god' per se, but I am highly spiritual and believe that there is more to this world and to us than what we can see, hear and feel. Some folks label that agnostic, I'm fine with Spiritual thank you very much. I pray, I meditate, I make amends, I forgive and ask for forgiveness. I also hold a graduate degree, understand research methodology and basic science. I see proof of evolution all over the place and don't understand why it's even a debate. I also turn to biblical passages for comfort. Though they are most likely fictional stories, there is always something new I get out of them - not because it was written by some 'religious' group, but because as an introspective spiritual person who processes information, I recognize that each time I reread something, I'm a different person than when I was the last time I read it.
There's a saying that you can't put your foot in the same river twice. I used to teach that to my students (when I taught at college). Same with a story: the story doesn't change, but what we need from it does.
The Universe itself is alive and electric and I don't understand atheists who say they believe in fact and science but then don't also believe in the fact and science of physics, molecules and the energy that they create. I mean, what is prayer: sending a certain type of energy out into a specified direction.

We are spiritual beings having a human experience.

Friday, September 13, 2013

So long as you live, keep on living.

With all this time on my hands, I do think about life, it's purpose, love, and everything in between. I even find myself thinking about transplant options again. I admit, I cannot accept death. It's sad, I know. I am not in turmoil about it (all the time that is). I choose to live my days as fully as can be. Some days that means all I've accomplished are washing the dishes and watching another documentary on Netflix. Yes, that's it. With the clock ticking, that's what I'm doing. During the first few months I felt the clock so loudly that I pressured myself into 'making a mark'. I knitted a whole bunch of sweaters and booties. I refused to let my existence on this planet go unmarked, unnoticed. If I choose cremation (against my religion, but not my pocket book), I won't even have a headstone to mark my existence.
I had awareness when I was watching loads of "foreign" documentaries about people outside of capitalistic self-involved north america. Most people are born, die with no mark of their existence. This became very apparent as I reignited my genealogy search and realized that if you weren't part of a religion, your birth was not recorded. You didn't exist. Even in my desire to want to be recognized for existing and contributing to society, in 50 years it won't matter. My cohort will be dead, as will I. It's only a matter or time.
This used to get me down.
It is starting to become liberating. I wish I was completely detached from ego so that I can say I'm no longer saddened by the idea of disappearing once I die. I'm not fully there yet, however I am recognizing just how insignificant life is.
I think the reason it's still not completely liberating is all the pain my leaving the planet will cause to my loved ones. For good reason, if my wife were to die tomorrow, I would be lost. For more than the obvious reasons that she is currently my care-taker. She is my soul-mate that has really shown me what she's made of. I've been partnered to some caring, loving individuals. One of whom I got to visit with last week. No one but no one else has been able to be as stupendously loyal as ma belle. I am forever indebted to her and strive each day to leave her with something greater than if I was ripped from this planet without warning. I beautify our home, create things for her, feed her nourishing meals, make her favourite bread, laugh as much as we can in this situation and let her know just how strong she is. I don't list what I do for credit. I list what I do to illustrate that it's not what you "buy" someone that counts, it's what you DO for someone.
So here are some preliminary palliative reflections that I'm sure dear readers have been waiting for. Life isn't about what you own, what brand of car you drive, where you work, etc. It's about the people in it. If you have your health, you're golden. If you have your health and love, you are rich. You have almost everything you'll ever need. Yes, I hear you when you say we need money. We do need to pay our bills and eat. However, the reason you have most of those bills is absolutely superfluous. There is so much waste in north America (and other "developed" countries). There is absolutely NO reason that your dog needs a rhinestone collar or a pink coat, there's no reason you need to pay someone to paint your toenails. In fact, about 80% of the things we buy, we don't need. I've been at home for 8 months now (minus the maybe dozen or so outings during the entire time). In those 8 months I've saved so much more money than I ever could when I was living amongst you. Sure I save on car insurance, parking at work, work clothes etc. but I never spent much on clothes to begin with. I've been pretty frugal most of my life that it was an actual dilemma the first time I bought a Coach purse. It felt indulgently silly but I was responding to the part of the "brain" that's influenced by media and pop culture. I tell ya, now that I don't watch the news and am (not) aware about some singer do something called a "twerk" (?) I don't have those brain-cravings to "fit-it". If I can be accepting of myself, that's all I need. When you have low-self-esteem you fall into the trap of believing advertising that tells you you'll be happy if you buy their product. We mistaken want for need.
What I say isn't new. There are lovely FB meme's going around every so often, posted by my more aware friends, but when you're IN the rat race, it's hard to really comprehend the difference between want and need.
My needs for actual things have dropped so much in the past 8 months that I actually had a fight with my spouse who wanted to get me a new phone battery when it proved that it didn't hold a charge longer than an hour. My response to her was that a dying person doesn't need new things and it wasn't out of not feeling like I "deserve" it but that I really didn't NEED a new battery (especially since I don't go anywhere anyway). (As a therapist I also have a problem with the word deserve - don't get me started!)
My desires from people have shifted from things to time. I sincerely value the time my family, friends and acquaintances have spent with me. I gratefully value the visits from people across the world. It means more than a "thing" that I can't take off this planet anyway. Time is priceless. Well, OK, I agree, a flight is expensive, but that in itself is a gift that no one can take away and it's a gift for the both of you.
Love is what's needed in this world.
It is true, the problem with our "developed" society is that we've begun to love things instead of people. You never know when it's your time. You don't - you may think you do, but you don't. I thought I did, but I don't know. I do know, as science does, that my lungs are 'going'. I do know that I probably won't be able to go out AT ALL this winter, if I survive. I do know that I surprise people. They don't say it directly, but they can't keep it from showing up on their face: I look good. That isn't from a place of ego, but a place of knowing - that you can live to die or live to live. So long as I am breathing, I am not going to be defeated. Nor will I walk around like I am. Granted there are days I have zero energy and the most I can do is feed myself and watch another documentary (if I don't snooze half way through it) but why stop smiling? Why stop dancing? Why stop singing? Why stop living?
"As long as you live keep learning how to live" Lucius Seneca.

Tuesday, August 27, 2013

3 year meet-versary

I recognize that I haven't posted in a while. If you can read this, I am obviously still alive. I have been keeping busy, cooking, gardening, knitting, sewing. Not so much of the last two items however. It's summer-time and I prefer to be outdoors before I am limited by the cold weather should I survive beyond autumn into winter.
I found it poignant to come online today to mark my "meet-versary" with ma belle. I didn't want that to go by without at least acknowledging that 3 years ago today I met my match. She's more than just "the one", she's truly my match, for better or worse, and since we're both Oxen (Chinese astrological sign) sometimes it's for worse. But I love her for it anyway. We are truly cut from the same cloth. So much so that sometimes I shake my head, but most times, I get her.
So, in honour of the night we met, happy 3 year "meet-versary" ma belle. Here's "wishing" I make it to 4 years.

Wednesday, July 31, 2013

I'm not a lawyer because it's not creative.

This is what I told ma belle earlier today when we got the results of something I've been working on for a month. Her July project was Cirque, mine was a legal battle with my neighbours.

I would have made a good lawyer. I dislike bureaucracy and logistics though. As Aristotle said, "the law is reason unaffected by desire". I have a plethora of emotions - that's the artist in me. For that reason alone I would not have made a good lawyer, however, there does come a time when I'm able to hang up emotion and pursue reason. That's exactly what I have been doing the past month of my life.
I have neighbours, intelligent neighbours I thought. They both have master's degrees. When I found that out I assumed I could reason with them. Long story short we've had problems with them since we moved into this house. Overgrown trees on what we thought was the property line impacting our housing/foundation. Two years passed and they still didn't deal with our requests. Earlier this summer we put our request in writing. That got the ball moving, albeit very slowly. They responded when they wanted and always ended their letters with "we'll keep you updated" for which they didn't. Then again, there was nothing to update since they did nothing. In the meantime I became proficient in my city's by-laws and the law in general. It's amazing how much work it all took, but also amazing that I could do this all from home.
In that time "I" wasn't free from passion. I became upset when I first realized we were held hostage by them and their slow-as-molasses pace. This tactic in itself was upsetting since they know I'm palliative and all I wanted to do was to sit peacefully in my "palliative paradise" (an area that borders on their yard). Many times I thought of calling the media: they are both public figures and one works for a church. I prayed about my situation, made offerings. The entire time both sides kept "nice" but as a friend of mine once told me, nice isn't genuine. It's a cover and not a good one at that.
It was challenging trying to hand it over to the universe.  Somehow I managed to and kept doing the research and making the calls that needed to get done.
Today I received the results of my work: don't f*ck with! My apologies for the expletive however I always had this saying "don't f*ck with the billi*ns" (for anonymity I will only write the pronunciation of my name, not it's spelling). We may be stubborn, but my parents' didn't raise weak, ignorant, stupid people. I love all of us. We are all so bright and know how to get things done. (That's another post: another BBQ with my lovely siblings and in-laws siblings).

Today I stood in what's left of my not-so-private "palliative paradise" with my bitter-sweet victory: a few thousand dollars later, we know where our property is - all done legally and with dignity (no fighting, only requests and niceties, no reporters etc.). I wept because these people wasted a month of my life. Had they not stalled, worked with us, we could have gotten things done. In the beginning we made offers of co-paying, of collaborating knowing these things are always tough. We also knew that they don't have money (not like we have much either, but we could afford $200 for restringing their chain-link)

In the end, the work I did will not go to waste: we are still getting a fence in the next few weeks and we now know where our property is, forever. It's something I'm elated to leave ma belle.

Of course, I have already written a thank you letter to the surveyor's telling him what the line really means, expressing my gratitude for their professionalism. They would have received it regardless of the results. Sometimes people need to know that even though they're "just doing their job" it may mean the world to someone else.

A few months ago my doctor walked us through dealing with pain, and the real possibility of slowly suffocating to death. We didn't want to hear it but her philosophy was "prepare for the worst, hope for the best". That's what we did: prepared that the results of this survey would be costly and take control (ie privacy) out of our hands, or would work for us and give us room to build our own fence. That's exactly what happened in the end. And, we also found out that their fence was illegally constructed on our property by four inches.

Someone in program asked me once: do you want to be right or happy? Today I'm both. 

Wednesday, July 17, 2013

WOW: my sibling family

Where do I even start with the amazing people in my life and on the planet...
Tonight my amazing wife made one of my "dying" wishes come true. She didn't do it alone, but without her logistic expertise it couldn't have been done. Last year I found out Cirque was coming to our town and I had just come from seeing another one of their shows in a larger town a few hours a way. I knew I wanted to go but when I became hospitalized and it was clear that my days are limited and my oxygen requirements are so high that leaving the home is a challenge on the best of days, it became one of my "dying wishes". By hook or by crook I was going to the show. Well, tonight I went! It took 4 months, one logistics officer, one Cirque PR, one awesome Oxygen provider, the local fire department, numerous Cirque security personnel and all of my siblings. "Operation Princess" went off without a hitch.
Two cars took the 5 of us to the Grand Chapiteau for the show. We travelled with all the travel cylinders that were allowable by law and met up with a free standing tank to last me the entire show and then some. Ma belle worked with the team to have it delivered prior to the show, and it will be picked up tomorrow by the oxygen company. While there the PR woman took care of us (let us through the lines etc. since we didn't have much time on the travel-tanks. It was incredible. I felt so honoured to have this done for me and have my entire (sibling) family there with me. In fact, family has been so much on my mind. One scene had a traditional hoop dance performed by a First Nations brother-sister team. I got so teary-eyed thinking of my own brother and sister, and wife and sister (in law) all with me. It really does come down to family in life. I feel sad for those who don't have family and for a while, I was in that boat. I was isolated from and isolated myself from my family. Now, with the exception of select people (you know who you are because I am in contact with you) I don't really want to spend the end of my life with anyone else, in any ridiculous drama or with people I only barely like. It's my time, my space, my life and I can do what I want with what's left. I am so elated to have my sister back in my life. We are still opinionated, strong-willed ladies but the thing I disliked about her for years is the quality I appreciate knowing she is strong, smart, loyal, just like all my family. Ma belle fits right in. I picked the perfect mate - she speaks our language: yesterday she had an operations meeting with m y siblings to make sure "operation princess" was all a go. I thought her super-organized (anal) plan would bother them, only to realize she was speaking their language (especially my brother the engineer).
Love, love, love us all.

Thursday, July 4, 2013

A good night's sleep and my cuddly kitty.

Well I'm still not having a good time getting to sleep. I toss and turn when I'm in bed and before I even get to bed I feel the anxiety rush through my body as darkness sets in. The sun is setting a bit earlier as each day passes. Though summer only officially crept in to town 2 weeks ago, it signifies the days getting shorter. Anyway I've had a rough few days - grief spilling out every which way.

Today it seems that my cat Princess seems to be having a rough day. She didn't come for her morning treat (she hasn't for a few days actually) and she is super cuddly. I think I totally understand her and her need for closeness. I have no idea how she is going to cope with me leaving. When I was in the hospital for 17 days, apparently she would howl when ma belle left the house for the hospital. I think she experiences anxiety too. Poor girl, it's going to be especially rough for her as I've been home all of the time every day for the past 6 months.

Cognitively, my fear of the night is completely irrational. Experientialy, the darkness is not comforting.

Friday, June 28, 2013

angel of death

Alright, now that I lived long enough to see the supreme court (in the us) make a ruling, and I may live long enough (keinehora) to see Cirque when they come to town in 2 weeks. I may even live long enough (keinehora) to see two friends come in from abroad. I now need to get back to the business of wrapping up. I haven't spent time in my sewing room in a long time: no sewing, no quilting. I did however finish yet another baby sweater recently for a (former) colleague but knitting just occupies my fingers while I watch the boob-tube. Rotting my brain on television is not how I want to spend my time left on earth. I don't have the energy to do much more - except to get up and cook dinner - which that takes up most of my day's energy. I look forward to friends' visits which had reduced, in part because it's summer and people are out of town, in part because the initial "crisis" is over, though I'm still in a palliative state. To the outside world, I'm still here and could be for a while. Many days I share that sentiment as well, then there are days like today (and yesterday) where I feel so tired, so down that I'm not sure what's left for me to do. I think about regrets and realize that some of my regrets include not "getting it all down" (writing as much as I've wanted to) - but then the exhaustion and fear kick in. I'm tired, my mind is not always clear and I'm afraid to get back to the spiritual essence of myself, because it is in that place where I'm more connected to the spirit plane and honestly that is terrifying. That's what makes going to sleep so terrifying. I don't want to disconnect from this plane. I try very hard to keep connected by imagining the silver cord anchoring me to earth. (In the old testament there is a passage about the silver cord theory, I cant' recall the book at this moment as this is what the fog does to me). I also know that's it's not ultimately up to me. I believe in organized chaos which means to me that everything happens for a reason, things are already written out (who knows, we could be someone's past) but that there's chaos because there's a greater energy at work called the universe that extends beyond galaxies. Atoms, particles, molecules, asteroids, meteors and falling stars are all uncontrollable. I'm not suggesting that I'm going to be hit by a meteor, not all all. What I am suggesting is that though I also believe everything is already planned, it's also not written in stone - there are several "outs". A wise spirit-friend shared with me that we do get a few outs. There are times where we are called (our number comes up to leave this plane) and sometimes, depending on the circumstances, we can say no. Then there are times when perhaps we have no more outs. Most of us don't actually know this on a cognitive level. I don't know how many outs I have left, or how many I've used up, with one exception. I have already taken one out. I have already had a visit by my angel of death. I know who she is, who she was in my life before she passed and why she came for me one night. This was not a dream, nor an hallucination. I did not "see" her or hear her. Her presence filled the room. No one knew about her. Not even ma belle. Cognitively her presence made no sense. On the spirit level I knew what she came. This was 6 months ago. I write this only now because the cognitive rational self made no big deal of it. Then, a few weeks ago a friend brought in a Reiki/energy practitioner from "the old country". After the session she told me who my transition angel is going to be (the one to help cross me over). Keep in mind she had no idea about what happened 2 nights before I went to the hospital. I have taken time to process this information - this practitioner knows nothing about me except that I was ill. She does not know my family, who is passed and who is still here.
Initially I was apprehensive to write about this experience - fearing men in white coats would take me away, then I remembered, I'm in the same field! When I read about other palliative experiences I come across similar stories - not that it makes it "true" but that it makes it not so strange. Nothing can make it "true" - with all of our science, we mortals are still limited in what we can measure, what dimensions we can access, etc. Unquestionable devotion to science is just another fundamentalist religion because our definition of science also changes over the course of history. I'm not a religious fundamentalist but I'm also not convinced that we know *everything*. We can't, we are mortal human beings, animals. We did not create the big bang, energy did. if anyone were to ask what my "higher power" is, I'd have to say it's energy or the universe, depending on the day. The includes everything from energy (E=mc2) of our divine spirits to the energy of scientifically proven molecules. To me it is *both* spirit and science and there's no reason to have a huge debate on why it can only be one. My physical body is coming to an end. The heart itself became just too tired to continue working. There's scientific proof on that (recorded on Dec. 23rd at 12:21am). My spirit is not yet tired enough to move from this container. Perhaps it's the energy of (my) spirit-matter/being that continues to mobilize this case. I have no idea, all I know is that I've seen the angel of death assigned to me and though I love(d) her (when she was physically present in my life), I really don't want to see her again for a long while.
I have no control over that.
I do have control over what I eat, the rest I get, the sleep I get (or don't get as in the case may be recently) and therefore still need to attend to all of that.
Perhaps now dear reader, you might understand why meditating, getting reacquainted with my spirit self and even going to bed, is scary.

Thursday, June 27, 2013

small rituals

I did it, I deleted my Huff-Po app. It was a big deal for me to uninstall this application last night. I'll tell you why. Ever since I returned from the heart hospital with the news that I had 6-12 months left to live I felt even more anxious at night. Okay, I already live with anxiety, this increase was too much. I needed several things to occupy my mind besides when I'm going to die, the sound of my weak yet strong heart beat etc. usually I turn to mindfulness meditation practice or even tonglen/loving-kindness meditations however I really didn't want to centre and be in the now: now being my palliative reality. So I used a few things for escape. Primarily I used to look at our Canadian astroanut's pictures from space. They were beautiful and left lovely scenery in my head to drift off to.
Shortly after discovering his pictures on social media, I found out about two cases involving human right being appealed in the supreme court (of the US). I installed the HUff-Po application to include that as part of my in-bed-time ritual. I had hoped that I would live to see the results of the court cases. In the meantime I had all but stopped keeping up with regular news. Actually I cut down on regular news when I started working in the inner city years ago. I had my fill of drug-overdoses, poverty, street fights and murder that I didn't need to hear about it at a national or international level. So, "gay voices" on Huff-po was the only 'news' I'd read. In that time several states introduced legislation to recognize equality of all individuals. Yesterday was the day I was looking forward to: living long enough to see the outcome of the court cases. I did it, now what. Retiring to bed I realized I had no more interest in reading the news on my app. It's going to be many, many more years before equality ever comes to that country and I probably won't be alive to see it, so why keep paying attention. In the end, it doesn't affect me. I live here, in the land of the truly free. Whatever freedom really means. I just giggled to myself, seeing the tubing I'm attached to, the restricts me to living within the confines of my house minus a few feet out my backdoor. Most people think would think I'm anything but free. Sure, I can't just hop into my car anymore and go wherever I want, do whatever I want, see whomever I want. I am more free than most people who are entrapped by the rat race of going to work, going to a store, purchasing yet another thing I don't need and then storing it away. Freedom is a state of mind, not a physical thing. I don't have to worry about traffic, line-ups, being late for work, etc. Though I am confined to my house I can appreciate all that I am, have had and possibly will experience in the days to come. I could, if I wanted to exercise resentment, greed, and other negative emotions, I could. Those would also keep me trapped and enslaved to believing that I am stuck with no where to go. Instead, I have the choice, the freedom, to CHOOSE gratitude, acceptance and joy for the time that I still have - even though it is limited to these walls.

We all journey towards death. It is inevitable yet very rarely spoken about. How we get there differs for all of us. Some have long journeys towards death and others face it immediately (as in a traffic accident).

Anyway, back to freedom.... the world is also witnessing another big event. The inevitable passing of Nelson Mandela. In honour of his fight for freedom from within four walls I leave you with this thought:

"For to be free is not merely to cast off one's chains, but to live in a way that respects and enhances the freedom of others" Nelson Mandela

Please be kind to each other - every one of us. Gay, straight, black, white, Asian, First-Nations, Aboriginal, conservative, radical, liberal or moderates. More compassion is really needed in this world. People can still disagree with each other, even at a primal level, but still show respect, tolerance and kindness. When our differing "beliefs" do not imprison another living being, that's true freedom. Perhaps I will return to "loving-kindness" meditations as my new bed-time ritual.

Sunday, June 9, 2013

the call

I have come to learn that Murphy's law is more about the law of the Universe. On Tuesday I wrote about bed-waits and only 3 days later I received a call offering a bed in TO. I was instructed to admit myself to my heart-hospital on Saturday to be transported to the centre of the universe on Sunday for a week of tests. I was also told that my "support person" needed to come along. Two unfortunates occurred with this call: the first was the timing of the call: late Friday afternoon, too late for my support person, if I had one, to ask boss for the week off (or at least the first few days of next week). The second unfortunate is that I still didn't have a support person - for the first half of the journey. The coordinator on the other end of the pre-transplant unit stated I need one and said I cannot do this alone. I understood this clearly so when my heart-hospital called to admit me yesterday I had to pass on the bed because of these unfortunates. This situation is giving me more stress than I had anticipated. I thought conscious choice was more manageable because my eyes are wide open. Not so much.
More things have transpired since then - so much roller coaster for one person to handle - and then of course family. I have stopped updating details on "social media" primarily because most people, mainly acquaintance, are pretty ignorant to all that's involved in this MESS. I don't think people stop to think about how hard all of these options are. It must be nice to live in the illusion that "if it was me I'd do..." No one can ever imagine what they'd do until they're in that situation because what you think you'd do changes when reality hits. Reality influences decision-making more than imagining. Period.
~ more to come ~

Tuesday, June 4, 2013

transplant follow-up: waiting

Welcome to Canadian health care: where you don't have to lose your house but you will most likely die waiting. I don't usually complain about Canadian health care as I know I'm very fortunate to be Canadian and not go broke because I couldn't afford the hundreds of thousands of dollars (over the years) to care for my cardiac and pulmonary issues. Even routine cardiology appointments can be costly. I am lucky and grateful to be Canadian. I also know that if I can't stand the wait, I am free to go pay for my health-care east of the border. I simply have to get in my car and cross the border to pay out of my pocket if I don't want to wait. I have never been tempted to do that, as literally have the people I know that have done that, have also died. (The trouble with paying for care is that you don't know who you're paying.)
I write this because I heard back from my cardiologist about tests in TO. What's taking so long: bed shortages for non-emergency testing (like me). Unless you're dieing this minute, it's back to the end of the line. Seeing as I don't have over $800,000 for the surgery (I Googled how much a double-lung transplant is in the US, sickening isn't it), "paying for it" is not an option. When organ donation sites state that thousands die waiting for an organ, I'd like to add that thousands also die waiting to simply get onto the list! I could be one of those.
What I don't understand is that even with the bed shortages in TO, why they wouldn't take my tests from here. They are the same tests, my city has the capability of performing the tests I have yet to take. I comprehend the nature of wanting to be part of the process, but seriously...
I just want to know: am I a candidate or not. If I'm not, I can get on with the letting go of life stage and if I am, then there are many decisions to be made.
That's where the process is at: the big WAIT.

Friday, May 24, 2013

transplant testing?

I know folks have been wondering about my transplant options. Where we left off was waiting for testing. I had the initial intake with TO and I was to move to the next step: testing to see if I really could withstand an heart and lung transplant. I was told to wait until I heard from them - also because I do not have any numbers to the TO team. They were not given to me and since I am not in their system yet, I do not exist to them, yet.
I've waited a month to find out about testing. In the meantime I started composing an email with my multitude of questions to my cardio np to see if she could bridge me to answers. I did not send it. I have been hesitant all month, wondering how on earth am I going to do this even if the answer comes back that I am able to go through this. Their initial comments were that I was an "ideal" candidate, in that I 'passed' the first stage on the way to getting listed. The next step requires more testing and acquiring what they call a support person. They will not list you if you do not have said person. That means that that person (or persons) must live with you, or you with them in To. The support person is integral to the transplant because as I read in the manual, they do everything for you that you can't do for yourself. It includes but is not limited to taking you 3 times a week pre-transplant to physio, making sure you eat, making sure that all the meds are taken, filling out numerous ongoing forms, etc. etc. There is so much work that the support person needs to do that it becomes almost a full-time job. That's why most times it's a spouse or a parent (if possible) or even a child. I did find out that the support person doesn't have to be the same person. It can be a few people on a transplant person's team but only one person can be the main contact at one time. Meaning, one person can take a one month "shift" then the next person can take the next one and on. This is relevant because in the month of reflecting on this process I came to discover that my very own wife who took a vow of "in sickness and in health" will not, isn't able to, be that support person.
At first I felt the peaceful acceptance that working a spiritual program gives one. I started thinking about people I know in TO, and the one aunt I have there. In the end, there is no one. My emails to my aunt have gone unanswered (the only means of communication I have with her) and though I have friends there, everyone has a full-time life. No one else vowed what ma belle vowed so I wouldn't dare ask anyone else anyway.
By the way, that spiritual acceptance I once felt, that has drifted. It's hard to accept that my own spouse isn't able to be that person. I realize that's a lot to ask from anyone, and it's not okay to assume it should be your own spouse, but we do that (as a society) and I do that. I'm doing that. I have to figure out another way to one, not do that, and two, find others if I am to go down this road.

Monday, May 13, 2013

the car is gone

I sold my Honda today. I was going to write vehicle, but anyone who knows me, knows that I only drive Hondas, and hatchbacks at that. I have driven, owned or co-owned at least 5 Honda Civics in my life. It's strange to not own a car and it hasn't even been 24 hours. I'm not sure if I posted that my licence was revoked about a month ago. No one took it away when I was in the hospital. It only came up when I needed my Dr. Lady to fill out my Long Term Disability forms and that question was on it. I could tell it was not a pleasure for her to do it as she looked at me and said that now that she's facing that question, by law she has to do it, then promptly apologized.

Losing my licence wasn't as hard as selling my car. I can't drive now anyway. I don't trust myself. But not seeing my hatchback in the driveway anymore: that sucks. Ma belle would still use my car to pick up bigger things like bags of manure. It's so much easier to throw stuff in a hatch than in a trunk. She thinks differently and that's fine because she is after all, the one doing the lugging.

Anyway, it's gone :( I'm sad. I'm more sad that it's gone than losing my licence. I heart honda hatchbacks.

Tuesday, May 7, 2013

serenity garden I

So my backyard postage stamp serenity garden is not moving along as planned. I over did it this weekend. Creative juices flowing, wanting to see loved ones, cooking, baking... it was all just too much. So yesterday was a big right-off where the most productive thing I did was sit in the back yard for 10 minutes directing ma belle on where to put the plant donations (we did receive some hostas, day lilies etc. from a friend who has a few acres of land). We haven't even begun to plant, never mind turn and fertilize the earth. However we had to put the plants in something (a bucket, plastic etc.) so the roots wouldn't dry out.
There you have it, a full day minus 10 minutes of sitting, watching bad television, reading, but mostly just laying about in pain and fatigue.
I know better to draw limits when I'm with folks. It's challenging when you also miss and love them and miss and love riveting conversations. Two of my favourite colleagues were also by this weekend and one of them I would spend as much time with as my very own wife. Of course I miss her. Of course our conversations are stimulating, we're in the same field, we are similar types of feminist counsellors.
Anyway, my backyard is still a mud pile and that's ok. I'm not in a rush though our growing season is so short. Mother's day is coming and that's my priority: I finished a lap quilt top for my mom years ago, it would be nice to actually finish the quilt so she can finally have it.
I'm feeling a bit better today but will pace myself so that I don't lose out on the remainder of the week. Besides, my pain has not yet disappeared.

Wednesday, May 1, 2013

How to enjoy summer in the city while on a leash

With spring arriving in these parts of the country I feel a new surge of energy that I didn't have the luxury to experience in winter. Some days I'm pretty successful at fooling myself that I'm palliative. Though I don't have the physical energy I once had, my brain hasn't stopped working. It's full of ideas, springtime ideas bursting with creativity and life.
I've taken to the outdoors though my oxygen tubing won't necessarily allow it. I say necessarily because I can barely leave my front door to look at all the pretty flowers starting to peak through the ground. My tulips are even opening up. I have only one foot of leash on the front stoop. That's where all of our garden is, since we have no backyard (we're on a corner lot) and the front yard is south facing anyway.
The other day I realized that I get something like 9 feet of tubing in the back. Seeing at the back yard is only 8 feet wide, it means I can move about. Most of our back is cement (patio) but a few feet from the door (within reach) is a small 8 by 8 section of mud. It's located where the sun don't shine. Literally. It's the north side of the house so nothing will grow there. I have a super friends and a helpful mom who have all informed me what I can plant in that section. My newest project is to build and grow a shade garden sanctuary where I can still enjoy the loveliness of the outdoors without burning in the heat and humidity of this valley. I am so pleased. Unfortunately there's next to no privacy. Being that small means we're right next to our neighbours (who aren't very congenial) and it's a chain link fence, meaning they can see me, I can see them. What do I have to hide really? They can't deal with the illness in their face, they can go inside!
So here we go, I intend to keep living until I'm not. I have lofty plans and goals for my time at home (I've come to call it retirement) by I don't care. If I'm not doing this dying thing properly, I can do it again in another lifetime (if such thing exists) since we ALL do it, guaranteed.

Last night we already put up our wind chimes, took out a small table. I found my favourite outdoor (plastic) table covering. As the beautiful weather unfolds, hostas, ferns, bleeding hearts, monk's hood will be planted. I may even hang some prayer flags and even a back bird feeder. I'll welcome the entertainment. I'm not sure how much I will actually be out there as I still love my sewing time but I hope to be there at least once a day when it's not raining.

Leash be damned.

As I "do" all of this (ok, my spouse mainly) I am reminded not only of Treya Williams-Kilber but of another beautiful spirit acquaintance, Janet, and countless others who've squished every drop of life out of "what's left". I may be departing, we all are, but I don't have to lie in bed waiting for the angel of death to come take me. I am still here. I may not know why but I'm surely not going to waste what's left. There was a reason my DNR was not with me when they gave me atropine in the ER that night. I've had many second, third, fourth, fifth and so on, chances in my life. This I know is my last and it's going to be good, sweet, succulent and full of love.

Now, if you don't mind, I have freshly baked brownies waiting.

Saturday, April 27, 2013

blood pressure

So my doctor came by to evaluate the blood pressure situation. It's part of the process as I know but don't want to accept. It's job in this palliative journey is to keep going down until... of course, I'm not "ready" - sometimes I wonder if I ever will be but then I trust that I will know, just like I was "almost ready" to leave. I have decided that when I became almost ready, it wasn't about leaving life or the planet but about the work and rat race. I was completely ready for that. (I think most people are and some days I feel guilty that I'm at home, enjoying the sun, my sanctuary etc. and ma belle still has to be out there in the race. Then I realize we will all have our time.
Anyway, back to the visit. The doctor consulted with dr. cardio man, and of course his reply was "there's nothing we can do". I've started disliking this man - espcially for not giving me the transplant option for me to peruse myself. Who is he to make these kind of decisions for me? So my dr. Lady took away one of my not-so-essential meds and we'll see what happens (that medication is known as a hypotensive). I've also increased my liquid intake (also medically supervised). That's been such a challenge after getting used to consuming only 8 cups of liquid total (including ice-cream, yogurt etc.) in a day. I was down to about 7 a day. Now I'm making every effort to consume that much not including soup and liquid. It's also essential to space it because all at once could start the "congestive" part of congestive heart failure (for which I'm not congestive, thankfully). My body has great alarms mechanisms. I feel the edema (the slushy galoshes feeling in your feet) that I know to slow down.

I have an amazing family dr. and I'm so glad she's been following me the past 12 years. Despite her busy schedule (she's on faculty at our med school), I'm still on her roster. She has a few palliative patients and really understands that sometimes just alleviating symptoms is enough. Dr. cardio man and his "nothing we can do" approach needs a bit of humanism.

Wednesday, April 17, 2013

follow-up interrupted

Well, I was going to write about my Telehealth Intake with Toronto transplant services, but now I'm updating where my sats are at. The palliative nurse took my blood pressure and it was 90/50. It's slowly dropping. Or quickly, depending on how you see time. There's really not much they can do. I am sad because advanced cancer death is not like advanced cardiac death. I could pass out due to low BP and that's that. I'm alone during the day so no one's here to shake me awake. Even then, I'm DNR so no one can resuscitate me (if that's what's needed).
I'm increasing my liquid intake and even had bread last night (bread, by nature, has a lot of salt).

I'm sad and scared. I was believing and enjoying my plateau. Now I really do feel like a ticking time bomb: fighting to not lose consciousness. I'm finding it kinda hard to keep anxiety at bay :(

Sunday, April 7, 2013

doing my homework: reading the transplant manual

This journey is not an easy one. It's an emotional roller-coaster for lack of a better metaphor. I've spent the weekend doing my homework. As someone who used to wait until the last minute to start and finish homework and assignments in school, I've done it again: waited until almost the very last minute to start serious reading on the (heart)-lung transplant manual for the TGH telehealth (video-conference call) intake appointment I have early this week. I have good reason to wait this long: when I first received the book, reading, discussing with my spouse and thinking about possibilities was pointless. It created anxiety and worry long before I needed to think about things. As a natural worrier, I found myself months down the road, tangled in a web of details that had almost nothing to do with the present moment. As someone who also (quasi) practices mindfulness, this was not good for my mental health. And so I put the transplant book away. That was a few weeks ago.

Since pulling it out this weekend, reading and doing web searches on heart & double lung transplants I have so many questions, mixed feelings and yes, even some anxiety starting to brew. My first thought is how this is going to be discussed with my spouse. Work is a great concern to her. She would have to leave the services which would mean an end to her career and our income/security. Ma belle doesn't want to sell our house, nor does she want to rent it to strangers. We would have no income, a mortgage, rent in TO (which even for a bachelor with roaches is more than our total mortgage here in this town). All of these logistical concerns come up, never mind thinking about how I would even get to Toronto. I cannot leave the house now due to my high oxygen requirements: more than all the portable oxygen compressors combined have to offer. I remind myself that I don't have to think of those things until I get a yes. If I receive a no from the TGH transplant team then I move full steam ahead towards the death and grieving plan. I've been slowly saving up for my burial (which I have yet to pay for due to my miscalculation years ago). My Sick employment benefits are about to end and I'm officially not eligible for my work's tong-term disability despite paying into it. They have a "no pre-existing condition" clause. I wouldn't be me if I didn't challenge it, so I will and hope for the best, because if the team does give me a yes (that I qualify for the transplants) then I will need the meager income and the decision-making will begin. Their yes doesn't infer one from me.

There are so many things to think about.

One but not all of the factors include life expectancy after such a serious surgery (for which less than two dozen are performed per year at the TGH). If I survive, I have a 50% chance of dieing after the first year. Risking my home, my spouse's career, my family, and dieing on the way to Toronto never mind on the operating table is a lot to wager for one year of life to live afterwards. I was happy and actually found myself hopeful when I read about the rare patient who celebrated 5 years of living after their transplant (right before the story continued with them usually dieing of kidney failure, diabetic complications, etc. as brought about by the anti-rejection/immunosuppressant medications that you must take for life). it was nice to dream for that short time, thinking about the places I still want to go see, the things I would love to do with ma belle. Some of which included a bike ride. I would love to ride a bike with her. I would love to kayak with her. Something I have always wanted to do but could never ever do, ever, is go for a run. We used to joke how I have somewhat of a runners' body and how I'm always so busy on the move doing something or other than she speculated that if I was able to, she bets I would have been a runner. you bet 'cha I would. To feel the freedom of moving so quickly on your own speed... I've never felt that and would probably cry every time I would do it if I could.
Oh to day-dream!

Thursday, April 4, 2013

Creating Consent*

Sometimes I wonder why NO is taken so personally.
We live in a world where women's bodies are other peoples' properties. Even here in the "western world" where the phrase "no means no" was supposed to mean something. Now, it's just a phrase. This post, although sounding like a reflection to 'rape-culture' currently in the media actually has everything to do with my illness as lived by a woman. You see, when a woman is pregnant stupid people still think they have every right to touch her belly to feel her own fetus. A woman isn't thought able to make our own choices. I'm being sarcastic but truthful. I'm a feminist. I took women's studies in both undergrad and graduate schools. I'm not a man-hater, despite devoting my intimate life to a woman. It's just taste. Like wine: liking one type doesn't imply that one hates the other, they simply know what they prefer. That's all. In fact, I spent much of my career helping men...a feminist knows if you want to chagne something, begin with the men.

Anyway, I'm straying again... so what on earth does consent have to do with being palliative, or being ill for that matter? Everything. In this society, despite being taught that women have the right to say no, speak up for herself or make her own decisions, those decisions or NO's are still second-guessed. Not just second guessed, but women are expected to defend their position because all too often the receiver of their decision takes it personally.

Why can't a woman make her own decision without it having anything to do with 'the other'? The simple explanation that women are always the viewed, never the voyeur (or at least that's how I learned in gynergenic art history class). To be more blunt: women are always in relation to something else, never  accepted as an independent organism unto themselves. So, when she says "no thank you", it's assumed the no has something to do with the other person. When a man declines an invite, it stands. Period.

Illness? Palliative?
There are well meaning folks who insist on being a part of my process but I never asked them to be. That's where the notion of consent comes in. Perhaps I should explain it another way: why are (my) boundaries always taken personally? Why does my "no thank you" have to do with your own grieving process? You don't need me to process losing me. You need your own therapist, friend, partner, etc. NOT me. I have enough on my plate already then to entertain folks who want to be supportive. Support comes in asking. Support comes in consent. Support comes in not taking it personally if I exercise my right to say NO.

When I was in the hospital I had a visit from a couple that I'm not even close to. I never had ill-feelings towards them, we just weren't close. Their visit however was non consensual. (They irony is that this particular couple speak about consent!). Actually, I think it's sad, not ironic that they could visit, unannounced, without consent, and then overstay their visit. People also assume that because they know you, consent is implied. Hm, sounds like another excuse to bypass the process of asking. I had another situation where someone who was once close also broke many boundaries, boundaries that perhaps weren't there years ago when we were tight. Times change, people change  and even if they don't, you still need to ASK.

So here's the second part to consent. Being able to exercise our voices through asserting boundaries. Sometimes boundaries unintentionally hurt others. That's hard to avoid especially when others' intentions are well-meaning. If we (women) do say NO we are seen as bitches, not nice and cold. Yet we continue to do it to each other, and allow ourselves to become people-pleasers. I could have told them that it wasn't a good time. I did tell them, many times, when I was tired and I wanted to rest. But that aside, the fear of hurting their feelings made it so that I didn't say "not a good time" when they just showed up, without consent. I see the intention in people and it inspires me and even moves me. It's that feeling that keeps me from setting a boundary. So I end up hurting myself rather than the ones who were non-consensual to begin with.

There was another occasion where a very clear boundary was crossed which resulted in my deleting said folks from social media. I'm proud of myself for the boundary but sad that it had to come to that. It hasn't stopped there.

Folks, as well-meaning as they are, have been crawling out of the woodwork it seems to 'get a piece of me' while I'm still alive. For a while, I thought "what do I have to lose, I'm a nice person who can see their intention" however the more I reflected on it, the more I realized that I am a nice person, and it's time to be nice to me. My time is my time and I have every right to say no and if someone takes it personally, that's their issue with NO, not mine. If they are struggling with the thought of mortality and youth (yes, I still think I'm young, despite being 40) then it's up to them to get the appropriate help, read the appropriate literature etc. It's not up to me to give up some of my precious time to help them through it simply by being a presence.

As I moved into my recovery community I moved out of the women's 'alternative' community. As time progressed all I heard were new discussions on the importance of consent versus non consensual acts etc. but loads of people not practicing what they preach outside of the 'discussion' venues. I don't miss the politics or people walking all over my/your no, well-meaning or not.  I'm not suggesting that everyone on a spiritual path or 'in recovery' is respectful, but I've had an overwhelmingly positive experience of 'those folks' asking before doing anything. None of 'them' in my life make assumptions. Most of them don't take it personally when I say no or 'another time' and they sure as heck don't ask for an explanation. No means no period. I've been so blessed to have some of those folks in my life.

All this to say it's never too late to turn over a new leaf. I'm starting to say NO and if you're on the other end of the NO it isn't because I don't like you, it's because my energy is going elsewhere. Some of the time it's with close friends/family but most days it stays with me. I'm spending time immersing myself in creativity - allowing my soul to speak while I still have the chance. Afterall, if you can't do what you love during your last chapter, then what exactly are you doing?

*"creating consent" borrowed from a friend and her brililant response to 'rape culture'. She's building curriculum "creating a culture of consent". Support it at http://www.indiegogo.com/projects/creating-consent-culture-by-providing-youth-the-tools-a-teacher-training-model?c=activity

Tuesday, March 26, 2013

a note to a friend

A friend asked me the other day to share with her my "top 10 lessons for dealing with illness". She is in the midst of her own health crisis that will eventually resolve itself. It made me think about what I have learned and how my thinking has been formed by living with chronic illness. I am one to shout from the roof-top about being your own best advocate but I have yet to put into words some of my guiding thoughts until this week. I have cut and paste what I wrote her and hope that it offers some help to others as well:

I'm sure you wanted to hear more spiritual inspirational things like 'gratitude' and 'meditation' which works for peace of mind, but not the physical :)

Here are my top 7 in no particular order:
  • Acceptance of what is, then pushing past it (some call it stubbornness, other strength);
  • Perseverance (see previous comment);
  • Joie-deVivre for the moment, because that's all we have;
  • CAL/saying "this to shall pass"
  • Asking/accepting for help (knowing limits and asking for help with things you cannot do on your own or with spirit-work) eg: taking meds as a form of asking for help
  • Getting lost/found in creativity (a form of spiritual exercise for me)
  • When all else fails, surrendering but reminding myself that "I" am not my illness/symptoms!

Thursday, March 14, 2013

final visit with Dr. Cardio man?

Alright I suppose I'm expected to report about my first visit out of the house. It was back to the Heart hospital. I had my semi-annual visit scheduled since last time I went (possibly August) so I was told to keep it since I want to look into the possibility of transplants.
To sum up, I was informed that I was mis-informed (yet again) about what I would need replaced. Again dr. cardio man stated I would need both heart and lungs transplanted, not simply one lung like my cardiac NP led me to believe on the phone a few weeks back. This changes things again. It means that there's more risk, less chance of finding all of those organs etc.
I was also told that the wait list in the city I formerly lived in is much too long for me and I wouldn't even qualify. That was very disappointing to hear as I would totally consider moving back there. I knew the city well, it was home once, and I still have a smallish community there. It's also close enough to home that my close friends and family could still visit me even one a day trip (only 2 hours away). Toronto on the other hand is really far (up to 5 hours depending on how you drive. I don't know as many people there that I could lean on. My family wouldn't be able to come at a moment's notice. Also, there are no jobs for ma belle as she has already checked. Never mind the cost of living: rent would be ridiculous. I know it sounds like I'm already against moving to Toronto for this procedure but I really am still looking into it. Cardio man will schedule an intake with Toronto via tele-health. I am curious, I will go through with it. Only then will I have more info about this entire process. Right now, dr. cardio man just doesn't have enough information as it's not his domain. He usually transfers and that's that.
What's most surprising are some people's responses to my choices. I've updated my social networking, as impersonal as it is, because there are more people than I want to call that are curious about what's going on for me. Given that I'm not much of a "chatting on the phone" kind of person, status updates suite me well. So here are some attitudes: a few folks are encouraging me to "go for it" not realizing what "it" entails. I know people mean well and want me to live, but after all their lovely memes, inspirational captions about living life fully, about quality and not quantity, I get "got for it". How very disappointing. People really don't stop and think before they "speak" their opinion. They don't question how someone might perceive your "helpfulness". I know, I'm one to 'speak' per se. I very much tell it like it is, for me. The thing is, even if someone "told it like it is" for them, I wouldn't be as bothered because it isn't coming from a place of "you should do this or that" as opposed to realizing what they might do for themselves.
Anyway, helpful people just aren't sometimes! And as Treya Williams Kilber said so eloquently in her book, you don't know what you'd do until you're faced with it so everyone who's thinking they'd "go for it" better realize that they aren't there. If you're not IN that space you have no idea what you would even do. That spaces changes things so don't pretend it doesn't.

Thursday, March 7, 2013

busyn-ness of nothing-ness

Yup so it's been quite a long time since I've written. This being a time of descent.
Well I've had none of that.
I've been spending my time NOT reading about death and dying - thank you helpful friends who've lent me books on the topic. I will, once I turn 40. For the past few weeks I wanted to have nothing of it. Instead I've knit up a storm, to the point that I've moved on from knitting. I tried my hand a crocheting and now I'm bored with that too. I've also spent some time in my much loved office/sewing/craft/meditation room which has now become the new of of the two oxygen compressors. As a result, it's usually too hot in that room, even with the window open during our Canadian winter. Most days the heat bottoms out my blood-pressure (for which is too low to begin with). I spend maybe an hour at most in spurts in that room, slowly organizing things, supplies, notions etc. I figure if I'm going to sew, I do not want to waste any precious energy on looking for a notion. I want everything disponible (at my dispense?). Well today I can say that all my buttons, threads, laces, notions, zippers etc. are nicely organized ~ in a state I've never seen actually ~ so now I can begin sewing. And sew I did! Mind you it wasn't long. I spent maybe 20 minutes at most sewing but it felt so great.
I thought about how psychoneuroimmunology ~ brain plasticity ~ has served me thus far. I want people to know it's not bogus, your brain really can change your body. I have a cardio appointment next Tuesday (oops, I guess I forgot to mention that big news). That appointment will be the first time I will be out of the house since my arrival home. We will be talking about transplants, mainly why I was never offered any. I also want to politely reem out my Dr. Cardio man. I want him to acknowledge the power of the mind over illness. Yes, I know what I'm asking for and I know it's a lot but I'm going to confront him nonetheless because that's just who I am.

Wednesday, January 30, 2013

roller coaster through hell

My cardiac NP called me today, in partial response to my email sent the other day regarding transplant. She also called to check in. I will give it to this woman to work long hours serving her patients and wishing them wellness. My positivity stops there today because I'm now left in a cloud of confusion wondering what exactly I'm doing home.

Our conversation meandered through complications with getting my Designer Drugs (now that I'm not working, they aren't covered, all $4000/mth). I have a phone number to call tomorrow. She also shared with me how she was in communication with my family physician who has been by twice thus far. She was telling me dr. Phys was asking the thousand dollar question: how long. NP shared with me that she told dr. Phys they didn't know. I didn't want to be rude, but this was confusing as a cardiologist read to me what Dr. Cardio man had written in my chart: 100% mortality between 6-12 months. Of course, NP added that it's hard to tell since I've surprised everyone. I get that, I'm not saying I'm giving up, but seriously at this stage there are some things that are certain, like the death of heart tissue, my incapacity to breath with room air. Then she through in confusing statement number two: my heart isn't as dead as I was told. What? This lead to her trying to answer the question about transplant. She added that until I go for a workup they won't know what's really needed but that I may not need a new heart, I may just be fine with lung replacement. I listen closer as she tells me that none of this is possible in this city. Confusion number three: I thought we had the best heart hospital/cardiologists in Canada. If I were to apply to have a lung transplant I would have to move to within one-two hours of Toronto... no ifs and or buts. No chartered plane would be acceptable. Only a move. And then, I may die there waiting. I asked about Montreal, since it's closer and she stated that not only is there a 5 year wait list but that it's inter provincial so our province wouldn't cover it. I cannot believe the politics that exist in order to live. But wait, I'm not done with the confusion.

She insisted that this is all dependent on Dr. Cardio man's opinion that I can even apply. Well, according to ma belle who's been asking him for years what else can be done, he's always stated that I wouldn't survive the surgery. I'm still left with wondering WHY this wasn't talked about before I became so ill. I'm also wondering why this is being talked about now that I'm considered so ill? We chatted for a little while longer with her drilling into me the point about being willing to move to TO. She mentioned Helen Campbell who did earlier this year (she was in the news so NP mentioned her). Great... WHY THE FUCK WASN'T THIS TALKED ABOUT EVER?

Ma belle comes home and I tell her all of this... within a half hour we are on the roller coaster of false hope and magical thinking: she already has a place in Trenton, we could live with her friends, the house could be rented etc. etc. In all this dance I think to myself, if I can't even make it out to the store on such high litres of oxygen, how on earth am I going to make it to Trenton? And how are we going to actually live there? Sure, she can have work, but what about me: my friends and family are here. Where will my support be? I can only knit so much! What if I die waiting (there's a high possibility)? How would she get my body back in Ottawa to bury me? This and a hundred other questions rush through my head as we realize this is all just magical thinking IF and only IF I was deemed "stable" enough for a transplant. It has been drilled into me that I'm not. That saying that "it doesn't hurt to try" is so very false. It's hurts so very much to have hopes raise within minutes and have them crushed again moments later with the reality that I "should have" asked years ago. I should have been persistent. I've lived my entire life thinking I've been informed, persistent and stubborn about my health only to find out that I'm asking all the right questions when it's too late and I didn't even know I could ask them.

I can't reverse time and now it's my fault, had I only asked when I was given the 'sentence' 4 years ago. What was I thinking not asking for a second opinion. I believed that I was dealing with the best.

The nightmare that ma belle has been living is finally starting up in me. This has awakened so much sorrow I feel so powerless. A once opinionated informed woman now reduced to sobs of reality.

Tuesday, January 29, 2013

a lifetime of work

A few years ago I started "the big clean up". What that meant is I started purging the copious amounts of stuff that I had, especially my fabric collection. Well this past summer and fall I went on a fabric shopping binge thinking that I felt well enough to sew, create etc. Why be so conscious of everything that was coming into this house when I thought I'd actually have the time to "do it all". In the back of my mind I thought that perhaps I was jinxing myself. I was right... here I am doing it all over again, but this time, every thing's gotta go.

Tonight I sat on my study/sewing room floor going through teaching paper and art therapy articles. My history of coordinating college programs, teaching at the college and my own work was all tossed into the recycle bin. Of course, I put aside any art & addiction articles for my colleagues, hoping it would be of use for someone, but everything else: all the PowerPoint's I made up, handouts, exams, copies of useful tips and articles all gone. I also came across articles I've either written or was mentioned in. My work and art work have appeared in many local newspapers, pride guides, new-age local magazines etc. Each time I'd ask ma belle (who happened to be witnessing this also from the floor) to take out her reading glasses so she could see my name in small print either at the back of a college brochure (a program I coordinated in 2005/06) or my name appearing under the art listings. I also coordinated the pride art show the year I was on the pride committee. All of this work, a lifetime of being active in my community, pushing art forward be it in mental health (I coordinated a few arts & mental health programs for which an article appeared) or art in pride. All of that work...

I've finished for the day not only because I'm physically tired but because watching all of this being tossed out, rendered useless is emotionally taxing. Ma belle never knew me as a college teacher. She met me after I left, knowing I had no more stamina to teach. She was seeing another side that she never had the privilege of knowing. I always wanted to touch peoples' lives and I hope I did. Actually, today I heard I did - I received a letter from one of my clients (my coworker delivered it during her visit today). He shared just how touched he was to have me as his primary counsellor highlighting how he didn't feel judged for everything I heard about him. Why would I? I've received plenty of judgement for how I've lived my life - too many people judge me - some don't even know me (you know, all those homophobic, racist, sexist folks in the universe). I am writing this client back. It's my goal to write something for each of my recent ones - but this one in particular needs a little more from me, and I'm working on giving it to him. What an honour to have been part of their journeys....

Monday, January 28, 2013

(Past) candidate for heart/lung transplant

I started cleaning out my office - it's going to take a long time since I kept much of my graduate work, articles, resources etc. You don't counsel/teach without having resources at hand. I realize that's what the Internet is for however I love the resources I've collected over the years.

I started with a small section - my legal and health records. I have a pile for the confidential shredders including my old housing papers, leases (what am I going to do with them in the afterlife?). Then I read my old health records. I will back track for a moment here and say that I've been keeping copies of my files for year now, going back to 1986 actually. in 1986 I had a double lung biopsy where the results indicated pulmonary hypertension. Records since then indicated that theoretically I was on a transplant list however each note added "she is currently too healthy" to be considered but will be an option when the time comes. So when did it jump from too healthy to too late? Why was this missed? Why were none of those options given to me, discussed at least? How could I have moved from that place to "too late"? I am monitored twice a year. Who wasn't doing there job? I am emailing my cardiac NP in the morning. I recognize that none of these questions or answers will change anything but I want some understanding. I am angry.
Devastated actually.
To think I could have had more...time, more love, more life!