Thursday, 27 February 2014

My day at Notre Dame Hospital transplant unit

We got to the Jewish General on time for my 8 AM appointment for a PFT.  The tech was great and it was not too difficult at all.  I saw Dr. A at about 10.  There were a couple of SNAFU's but they proved to be not serious, just information delayed.  When I set up the CT scan and the echocardiogram, no one told me that I had to physically bring the CD's with me.  I should have realized though. It meant that I still do not know what that little nodule has been up to since last fall, nor do I know what, if any recovery my heart has made.  Dr. A. emphasised not to say tumour when I was in the presence of the transplant doctors later in the day.  Nodule, not tumour.  Say tumor Dr. A said, and you will be tossed instantly. So, no scans for Dr. A until he either gets the report, eventually, or I physically get him the CD's.  There also will be no reports for the doctors at Notre Dame, but Dr. A told me to relax, that is was not really relevant for today.  No problem.  He seemed pleased that I had gotten to knock on the door.  I thanked him and got a follow up appointment for April 11.  He will call me if there is any cause for alarm from the pending test results.  Ain't gonna happen.

We got to Notre Dame two hours early for the 1 PM appointment. Nicole and I went for a bite in the coffee shop and Cecile went off on some personal errands.  At noon I could not wait anymore and we went up to the clinic on the 7th floor.  

When the elevator door opened I stepped out into the realm of the people who might give me a chance to bike and walk and run again.  Everybody was warm and genuine, all of the paperwork was done and ready.  We were ushered into a quiet waiting room and told that we would first see a spirometry tech, then be interviewed by an intern, followed with a visit with a nurse, and then finally an meeting with the director of the program, Dr. Charles Poirier.

Spirometry results matched those that were done earlier in the day. Results were lung volume capacity at 26%.  Actually, a peachy result.  The last couple of times it was around 15%.  

The meeting with the intern was actually fun.  I wish I had wrote down his name, he is a really nice guy.  From Universite de Sherbrooke.  The interview lasted about 45 minutes and covered just about everything you could imagine.  I did not try to steer the interview in any way.  I spoke honestly and frankly.  I did not try to paint myself as a person with no quality of life.  I had to detail what I knew about lung transplants, the stats.  I was questioned at length about my expectations from a lung transplant.  He was impressed and told me that I had done my homework.  I He did not much care that I used cannabis every day as long as I was not smoking it, though it interacted with some of the more than 50 drugs I would have to take post transplant, so I would have to give it up at some point.  I assured him I would.  He told us I met the criteria for transplant as far as the information I had presented with went.  The nodule, my heart and my current quality of life were all issues that would need to be looked at, but as far as a quick interview and review went, he felt I would be able to go on to the next step and be listed for transplant.  This of course was subject to a thorough review of my chart and an interview with Dr. Poirier, both of which would happen shortly.

Nicole and I returned to the waiting room for a short while until the intern returned and told us it was time to meet Dr. Poirier.  We were ushered into the same office as earlier.  Dr Poirier is a warm and charismatic person who makes a strong first impression.  He greeted us warmly and welcomed us.  He was very direct and straight to the point.  My lung condition meets transplant criteria. The nodule has to show two years of no change before they would list me.  My heart is not strong enough to survive the surgery currently.  I would most certainly die on the table.  If that changes, they will list me for a lung transplant.  It would have been nice to have had the CT scan and the echocardiogram for him to read, but it really does not matter.  They will be sent to Dr. Poirier shortly. Dr. Poirier will stay in touch with Dr. A, and Dr. A will stay in touch with Dr. Poirier, both of whom are now in touch with Dr. P, my cardiologist.  If and when I meet the conditions I will get on the list for transplant.  

I left Notre Dame Hospital extremely satisfied.  I  was wise not to build up my hopes unrealistically.  There has been no emotional letdown at all. If the stars align, then they align.    

So, I got some stuff to do.  Pending seeing the cardiologist, which ought to happen in the next few weeks, I am hitting the treadmill hard.  I will start lifting weights again.  Time to visit some transplant forums and find other people in a similar situation to see what I might be able to do to strengthen my heart muscle, if that is in fact possible.  In the moment and positive.  

Sunday, 23 February 2014

Nice day out there

Shit has sorted itself out.  Big assist to Nicole!  Happy I spit it out.  Feel better. I am ready for all the poking and prodding on Tuesday.  It be sunny out there.  

Friday, 21 February 2014


The shame, misery and uncomfortableness that I cause myself by asking for help now trumps any benefit I might have gained from the actual help.  No more asking for help.  No more hearing "call me and remind me," no more "ok no problem and then having to remind you twice when the time comes.  No more.  I am done.  No more waiting for answers that will never come. 

Wednesday, 19 February 2014

Two great friends

Sugar AKA L'il Shug
Spice AKA Spicey, Spicer

Our beloved Rufiie died in the summer of 2012, far too young.  He was a real character, everybody loved him.  He would jump, shoulder height on command, sometimes without, into our arms.  Our house was somber the rest of the summer.  When I broached the idea of getting a kitten with Nicole a little while later she was adamantly opposed.  It was too soon.  The lack of little feet making noise on the floor bothered me and left me sad, more than I would have expected.  Finally, in mid September of 2012 I asked Nicole again and this time she was less opposed.  She was ready to think about it and talk about it.  

I had already begun looking for a kitten.  Our kitten was going to come from a rescue shelter.  Using Google I found a few local veterinarian clinics where staff were sheltering cats and offering adoption services.  Craig's List and Kijiji were also full of ads offering cats for adoption.  I made a lot of calls over a couple of days and nothing was jumping out at me.  By now Nicole was warm to the idea of a kitten.  

One ad on Kijiji caught my attention in particular for some unremembered reason. I decided to call and it was a good choice. The lady I spoke to told me all about her shelter network.  She was one of many activists who took in unwanted or abandoned litters of kittens.  They had vets in the network who provided the necessary medical services.  The activists sheltered and socialized the kittens and found homes for them.  I liked what I heard.  It was her turn now to question me.  She wanted to know all about the animals we had over the years.  She wanted assurances that the cats would remain indoor cats, not ever be declawed or given away.  She told me there would be a contract outlining my obligations to both the shelter and the kitten.  It was almost too intrusive.  I came close to just saying thanks, I am going to go elsewhere for a kitten.  Fate kept me from doing that.  She told me she would bring some kittens over to our home the next night for us to meet.  She would conduct her interview of us then.

She showed up the next evening with her boyfriend and six kittens in tow.  She opened the cages and it was kitten chaos.  They were all around eight weeks old.  They were all adorable.  The cat lady, as we came to call her, wanted to see our house.  She asked a lot of questions which were clearly aimed at getting a sense of how a cat in our house would be treated.  She outlined what would be contractually demanded of us if we we chosen as adopters.  The shelter did not want the relationship with the kitten to stop at adoption.  They would provide sterilization and vaccination services.  If for whatever reason we could not care for the cat we are obliged to return the cat to the shelter.  

She liked us.  She was sure we fit the adoption bill.  Then she dropped a big one.  You ought to adopt two, one is no good.  Cats are way happier if they have company.  We were not convinced whatsoever at first.  She had done this before though, and we were putty in her hands.  We would try it for a week, see how we felt. We actually believed it, too!  

The six of them were scampering about, into everything as kittens will do.  Picking two was almost impossible.  There was a soft grey male who I could not stop looking at and a black and white female who reminded me of Rufus and Rufie.  The others were all so beautiful, too.  While asking questions we learned that a little tortie sort of chimera kitten was the black and white's sister.  That resonated with both Nicole and I for some reason and we picked those two.  Arrangements were made to have them brought back to us in two days.  Two evenings from now there would be life in the house again!

Next day cat lady called to inform me that higher ups in the network wanted to investigate us more thoroughly. They wanted to speak to our vet.  I just about blew a gasket.  The whole process 
was starting to feel a bit ridiculous.  I capitulated and provided the info.  She called back later in the day to confirm everything was fine and she would bring the kittens that very evening.  I went out to the local pet store and dropped sixty bucks on a cool cat condo to put right in the middle of our 12 x 6 big window in the living room, along with a monster big domed litter box and a whole bunch of other kittie supplies.  They were going to come home in style!  We had settled on Sugar and Spice as names. 

Right on time cat lady, boyfriend and two adorable kittens arrived. Bit of paper work to do, kittens to cuddle.  Kittens vanish under the bed.  Wisely, we decide to leave them be for a few hours.  Cat lady tells us she will call us frequently in the next few days.  We were still unsure about two kittens.  Hah!  Suckers!

We could not stand it anymore, it had been a few hours since they had scampered under our bed.  We each went to a side of the bed and we gently talked to them.  We coaxed them out.  Onto the bed they went for pets and cuddles.  That was that.  They never hid away again.  Sugar spent the night on my head, literally.  She washed my buzz cut scalp thoroughly.  It took her all night.  I let her do her thing.

Spicey seemed the more standoffish one.  Wrong.  I bonded with Sugar the first morning.  She was sitting on top of the kitty condo and I was across the room on the couch.  She made eye contact with me and for the first time I saw those intensely green big wide eyes.  I said come on Sugar, you know you want to!  She flew across the room from the top of the kitty condo and bounded into my lap.  I was now owned.  

Over a few days we learned about the two of them.  Sugar was indeed well named.  She was a goofy little love bug.  Large frame, little legs, moves sideways and sounds like a robot.  Spice, totally confident, loving, occasionally wicked with the claws.  Amazing little athlete. Owns her twice as big sister.  She is a scrawny little thing.  That's a spicey little cat!  

I had no idea just how much I would bond with these two kittens. I had loved pets before.  What was different this time?  I was different.  Home with them 24/7.  I have been away from them only 8 days in their lives.  I am absent from their lives only a few hours a month.  I am always with them.  I also have a newfound appreciation for living things that comes from living in the moment.  I always have time for them.  They always have priority over anything else, Nicole excepted.  I love them and they return the love, all day, everyday.  Nicole and I laugh and laugh some more.  Just another day with the girls.  So much life in our home! Such fun noise!  You just never know what will happen next.
I struggle up those stairs from the basement, resting once or twice on the way.  Spicey never leaves my side.  She stops when I stop. She bobs her head and grunts, rubbing against me when I get to the top.

When I go to do virtually anything Sugar is my shadow.  She follows, watching my every move intently, rubbing against me constantly.  When I rest on my recliner she is never far from my side.

Spicey the love bug can be found wherever a lap is available. You can pretty much handle Spicey however you want, upside down, over the shoulder, rolled up into a ball.  She is good with it all.  Just don't touch her anywhere near the base of her tail.  She will rip you up.  For a long time I am one big prednisone bruise.  It was cool though, my bad.  She no longer uses the claws.  Phew.  She also plays fetch the ball with aplomb, at least sometimes.  

Life is like an equation.  It balances out, always.  As I lost on one side, I gained on the other.  See?

Tuesday, 18 February 2014

Where, I is at?

If I had actually wrote down all I had composed in my mind this month, I would have written at least five thousand words, probably more.  There are a couple of reasons why thoughts that should be appearing here are not.  First, I am profoundly detached from most everything, which is not all bad, considering.  Second, I am censoring my thoughts for a number of reasons, all of them bad.

It has been a hard month physically.  I had a cold, and an abscess. I ended up having to take prednisone and more antibiotics for a couple of weeks.  I feel ok now, more or less, but my breathing is weaker than ever.  Back to being as busy as I can be in the house. I can move around, cook and do stuff for a couple of hours each day before I can't do it anymore.  Mentally I think I am doing ok.  I am detached from my illness, my fate.  After all, there is nothing left to do but watch and see what will happen for a while.  There will be time to make decisions and wonder about what will be, later.  I am not detached from Nicole or my friends.  I stay in the moment virtually all of the time, stress free and happy even when I feel ill.  Asking for help is stressful as is hatefulness, but that's about it, at the moment.

ECG on Friday, followup to last summer's heart attacks. Next Wednesday Dr. A. reads the results of the CT scan and tells me how the tumor is doing, and afterwards to Notre Dame and The Lung Transplant Eval.  I am almost indifferent.  The only thing I am remotely worried about is how we are going to get there.  I will make that damn Para Transport application this week!

Me, Sugar, Spicey and Nicole are doing fine.

Sunday, 9 February 2014

Joy is where you look for it!

It has been a challenging ten days or so.  In spite of this I am feeling excellent overall.  Currently the right side of my face is swollen with an abscess from a tooth that broke last year.  I woke up during the night from the pain.  It started a few days ago and had not hurt much until now.  Throwing ibuprofen, antibiotics, prednisone and many canna caps at it.  In spite of this I am in a good mood, laughing with Nicole, playing with the cats.  Cannot go to the dentist without consultations.  

Last weekend the sewer backed up and water could not get out of the house.  Had a similar problem before so I was sure I knew what it was.  Told the plumber so.  Seemed correct for a few hours, too.  Then it wasn't.  Day after we did it again, right this time.  No more water.  $300 from that little "yeah we are getting ahead" pile.  Another $200 the next day from a burnt vacuum. Well, we had it to burn, eh?  Easy come, easy go.  Normally would have upset me enough to dwell on it.  Not this time.  Excellent was how I felt.

Nicole caught a cold about two weeks ago, a nasty one that laid her low for three days.  Very uncommon.  I thought I had escaped it until ten days or so ago when one day I woke up with zero energy.  My first thought, of course, is to defer to the words of hate, the self doubts, and to take a piss on myself.  That just makes me smile.  This is a reaction from the past.  This is a reaction that does not happen anymore with any real ferocity.  I have a cold.  I must lay low and take care of myself.  I need to contact Ester, make a plan and stick to it.  

It seems that no matter what happens to me my spirit is unaffected, I remain in the moment, alive, gloriously alive.  

I do not hate anyone.  Hate has never been a part of me or my thinking, ever.  I have tried.  I failed.  I am extraordinarily pleased about that.  I don't think you can be happy if you are able to hate.  

Am I deluding myself about my level of current happiness?  I think by now I would have cracked if this was so.  In the middle of the night when all is silent and all you can hear is your thoughts, I still feel the same level of contentment.  When tested I still feel the same level of contentment.  When I am in pain, same.   When you tell me you hate me and that I should be dead I feel sad but otherwise unaffected personally.  How can this be so? 

Many months ago I let the big questions go.  I learned how to let ego go, mostly, and I work on that everyday.  I love like a madman.  I wish people could feel what I feel.  I wish that angry people who hate, who use their hate to influence other people to hate too, also could change, could see, could grow, could get the help they need to exorcise the demons that torment them.  I wish that with all my heart.  One thing I have learned that gives me great comfort is that I will die with a smile.  There will be no torment, no fear of judgement.  I am a man with open eyes and a clear heart and mind and I shall pass accordingly.  Not yet, though.  I got me some more loving to do.  

Saturday, 1 February 2014

A Nicole Story V

My mom was amazing with Nicole when she got home.  Between the two of us Nicole was engaged every waking second, which, at that time amounted to about 8 hours a day.  Dr. Minuk had told us that she would always need more sleep than normal after the stroke.  Nicole had lost a lot of weight, she was frail for the first time since I knew her.  Cards, board games, puzzles toddler level for a very short time, she wanted more and more all the time.  

We went to the Julius Richardson early in January.  I loved the place right away.  Nicole was going to have some physical therapy to try to alleviate some mild motor damage on her right side, occupational therapy and speech therapy.  Three sessions a day for four months.  I think we found out just how many lawn bowling friends we had then.  Transport was not going to be a big issue for those months.  Whenever Nicole was not in therapy she would be with me, working more.  She loved the work.

You could see progress every day, if you looked, hard.  

She was joyous about therapy.  She ate it up.  

Right about the end of the month Dr. Minuk called me and asked me to bring Nicole to see him the next day.  He would say nothing else.

Into a gown for Nicole, one minute examining her legs.  "Has she always had these light blue veins on her legs?"  "Has she ever had children, been pregnant?"  No to both.  He tells us that he thinks he might know what happened to her.  He remembers a seminar he attended, something jogs his memory.  Dr. Minuk picks up a phone and calls a hematologist he knows Dr. Sollymoss, also at the MGH.  We go for a blood test and a visit with Dr. Sollymoss. Next day we knew who the enemy was, antiphospholipid antibody syndrome, a fairly rare disorder to have at her age.  Coumadin was the cure.  Thin blood, no strokes.  She adapted to the coumadin perfectly and has had no issues almost 15 years in.  We were scared for a while about the issues associated with coumadin.  It proved to be a lifesaver.  No more strokes. Without the coumadin it would have been one stroke after another.  I got really lucky, indeed.

When Nicole started her therapy in January we set goals, goals they told us she could not achieve. She wanted to be independant, able to travel around using public transport.  That seemed a long way away.  She wanted to overcome her aphasia and master the brain to tongue connection that confounded her so.  She wanted to some day coach lawn bowls again.  

The Richardson stretched out her therapy until the end of June.  They arranged for more occupational therapy for her at the Catherine Booth Hospital.  That would last another year.  She eventually passed her tests with therapists following her around the city for days and days watching her to see if she was going to be safe, if she could deal with what she would face out there.  She was elated to know she was officially retired.  She really liked that part.  On her last day at the Julius Richardson I attended a presentation that she gave to her therapists about lawn bowls.  Oh, my, how happy that was!  She was a bit busted up, a little rough around the edges, but the center and the joy of my life was back.