Thursday, 10 November 2016

And so it continues...

Now it is November and two months since my husband's hip replacement.  Last Monday he went back to his regular routine of seeing clients which means in and out of the car countless times. On Sunday he drove to Barrie, about forty-five minutes away for a meeting just to see if he could do it.  He had his post-op appointment and the doctor was very pleased.  However, because he was in so much pain for so long with his left hip he relied on his right hip. An x-ray of that shows that it too will have to be replaced in about a year. But right now, today, he's doing well.

In the midst of all of this I got sick. In taking care of him I probably wasn't taking care of me. I developed a bronchial infection of some sort that left me coughing and gasping for air. I know that when this happens what I need is oxygen and the oxygen is at the hospital. At 11:00 at night I called an ambulance. Tip: In Toronto if you need to go to the emergency room the fastest way to be seen there is to go by ambulance. First of all, there is oxygen in their truck. They do triage in the truck as well and once you arrive at the hospital they cannot leave you until you have been seen by a nurse. You are their responsibility (plus you're on their gurney) until someone in emergency sees you.

Anyway, I was put in an isolation room (due to the cough) and hooked up to oxygen. Now, I have had a lot of nasty things done to me but the absolute worst, for me, is the IV.  I have small veins that roll away when poked and sometimes it takes several tries (ouch) to get an IV in me. (After all of thiswas over I found out that I even had one in my leg which means it must have gotten nasty at some point.  I responded to the anti-biotic for the bronchial infection within 48 hours. But underlying that was a fungal infection growing on my lungs. This was spotted almost two years ago but all the docs did was send me home with a puffer.  My lung function has plummeted from 1.18% to 0.75% in the last two years.  It is the reason they hesitated to do a bronchial wash on me. A bronchial wash means they numb your throat, make you groggy but not asleep and feed a tube down your into your lungs and literally wash them.  However, someone with low lung function can respond negatively which, of course, I did. I had to remain in hospital on a breathing tube for several days.

I am home now but with oxygen.  This, to me, is a huge step backward.  I haven't had to be on oxygen in the 16 years since my transplant. So I am exercising as much as I can to strengthen my lungs and get off of it. It's not easy but anything worth having never is.

Wednesday, 2 November 2016

The Hip

I cannot believe that so much time has passed since my last post.  Most of it its sheer laziness but a lot of it is just, well, life!  On August 18th my son left for Hong Kong for 6 months as part of a two year contract with a company that is introducing the world's first robotic lego.  Less that two weeks later my daughter left for university.  And this kid really lucked out.  We had bought our son a used car with quite a few km on it when he was in his 4th year of university.  Because he was the director of his university's solar car initiative he often had to come into the city to pick up parts.  We had planned on buying him a new car upon graduation (didn't see the whole Hong Kong thing coming at that point) but he said he wanted one then and he would drive it until it "died". So off he goes to Hong Kong and offers his sister his car.  He didn't bother asking us, his parents, the financiers of the car, just offered it to her.  Anyway, we said she could take it with her to school if she found herself a free parking spot and upgraded her licence to a "G" this rating greatly affects her insurance premiums.

So I spent my time with my kids.  On Sept. 8th my husband had a hip replacement.  He was only in the hospital for 2 nights.  His mom and I made sure he had every gadget made to help people who have been through this procedure.  His mom really knew it all because his dad has had both hips done.  There were a lot of sleepless nights for the first two weeks.  He just couldn't get comfortable.  He is also an early riser and I could hear him trying to manoeuvre himself on crutches from the bedroom to the kitchen to make himself breakfast.  I had moved some stuff around so there wouldn't be a lot of bending or reaching for him because I knew this was going to happen.  He spent the majority of those two weeks sitting on our deck in the beautiful still summer-like weather.  I set him up with an anti-gravity lounge chair, a slanted cushion (to promote blood flow) as well as a pillow at the small of his back and one between his back and the chair.  When he didn't have someone visiting him he sat out there and called it his "drive-in" because he watched Netflix movies on his phone.  He did the small amount of physio he was allowed to do.

After that it was time to go back to work (for him anyway).  What you don't know is that my husband is a work-a-holic.  His life is (in this order), our kids, me, work, leisure.  He rarely takes vacations.  Because he is in the food business we have never escaped the cold in Toronto to go somewhere warm during Winter Vacation because that's when people eat.

So, back to the hip replacement.  His is an early morning business.  He had one of his employees who has to pass our neighbourhood on his way to work drive him there and then he would call me when he was ready to be picked up, usually around lunchtime.  Sometimes we would go to visit a client to pick up a cheque or deliver a small order.  This continued until the beginning of October.  And then, things really started to fall apart.

But that's enough for now. I'll leave you hanging and write the rest of what happened in my next entry but I promise that it will be soon!


Friday, 12 August 2016

The Frittata

This post is dedicated to my cousin and one of my BFFs, you know who you are and I'm sorry it took me over a week to write this.

Last week I spent two hours on the phone with the person to whom this post is dedicated to. We don't live in the same city and the phone call was long over-do.  If we did live in the same city she is the kind of friend that could show up on my doorstep unannounced and I wouldn't care (well, maybe I would care just a little bit) that my house was messy and I was still in my pyjamas in the middle of the afternoon.

We talked about everything. Our kids, our husbands, our extended family. It got to be around 3:30 in the afternoon and I started to rummage around the kitchen, looking at what I had to make for dinner.  I think that needs some further explanation.  I don't like to cook. I don't like to grocery shop and I don't really care what I eat. I could live on peanut butter sandwiches, french fries, onion rings, frozen pizza and KD.  I was always a picky eater, which used to drive my mother-in-law crazy since she is a gourmet cook and always makes one of what someone else in our family enjoys at our weekly Sabbath dinners. There are 24 of us altogether when everyone is in town but usually about 14-16 of us show up on a regular basis.  All of that cooking is a lot of work for an 80 year old woman but she refuses to give it up.  She says that she will continue to make these weekly dinners until she no longer can; it gives her purpose and keeps her family together.  And it works.  All ten grandchildren are very close, more like brothers and sisters than cousins and eagerly seek each other out for advise and company.  For example, when my son came home from Israel last month he got up at 7:00 the next morning so that he could go and have breakfast with his youngest (18 months old) cousin before she went to day-care.

I used to make dinner every night when my kids were growing up.  Than, ironically, since my husband owns a business whose prime product is deli meats and hot dogs, my eldest turned into a vegetarian when he was about 15 years old. His younger sister, who never really ate red meat to begin with, promptly followed suit.  I scanned vegetarian recipe sites, learned about tofu and discovered the word of soy products.  I made spaghetti and "meat" balls out of  soy made to look like ground beef.  I discovered "chicken" and "beef" strips for my stir fries.  That didn't last very long, although.  My kids both taught themselves to cook and I, well, didn't.

Anyway, back to my dinner.  She emailed me a recipe for a frittata.  I followed the instructions and it came out great.  It turned out that both of my kids had dinner plans already but my son stuck a fork in it for a taste when I pulled it out if the oven.  "Mom, this is actually good!"  High praise for a cook like me.  When I got up the next morning I found my son eating the the leftovers for breakfast.  Enough said. Thanks, D.

Sunday, 31 July 2016

Procrastination be Damned

Finally, I am actually posting a new blog which I have been promising myself to do for weeks.  First of all, I have been spending a lot of time in the Kawarthas, the lakes which are about two hours from our house to the cottage.  I thought that going up there would make me more productive but it's actually just the opposite.  But the main reason I have been spending so much time there is that in the summer here in Toronto most days are unbearable for me to breathe.  The humidity is so oppressive that I can't really spend much time outdoors.  Not that I am a sun worshipper but it would be nice to be able to put on a pair of shorts and a tank top and work outside.  

Last summer I noticed that I was having a lot more trouble breathing.  I went to see the respirologists on the transplant team at the Toronto General Hospital.  There are so many reasons I avoid seeing them but in the last few years it's mostly because I feel like they really don't care that much.  When I had my surgery I was the 500th patient to undergo the procedure.  Back then the transplant team was relatively small and I knew my surgeon as well as the few doctors who followed me.  However, the team has grown which, don't get me wrong, is a good thing.  It means they are doing more transplants and less people are dying while they wait on "The List".  For me although, it means that when I need to see one of them I get a different dr. every time.  Once a year I have to have a full assessment.  That means I have to be in the hospital for a full day or x-rays, breathing tests, bloodworm, a 6-minute walk all culminating in a visit with the doctor.  Last year I had to cancel my scheduled assessment appointment because I had some unexplained bruising on my stomach and my family doctor (another nightmare which I will explain another time) had scheduled some tests to check out my abdomen.  The transplant department never bothered to re-schedule the assessment.  

Ok, back to last summer. First I did my Pulmonary Function Tests, or, PFTs.  Since my transplant my breathing rate was always around 1.73 - 1.78.  This is actually a terrible score but it was where my body had chosen to settle after my surgery.  So it was terrible but consistent.  The PFTs I did last summer had fallen to 0.78.  Not good. The docs decided to do a CT scan of my lungs.  They found signs of an infection and gave me an inhaler to be used at my own discretion.  The inhaler had 60 "rounds" in it and I used it very infrequently and it lasted me almost a year.  

I returned to the transplant unit doctors about a month ago.  This time it was because I was nauseous a lot of the time.  My family doctor couldn't figure it out so I made an appointment with the transplant team.  I repeated my PFTs and they were still lousy.  I had a CT scan and they saw the same infection that was there the year before.  Then they pulled up a test that I had done by a gastroenterologist in 2008.  I had completely forgotten about it until they brought it up and I remembered that I had been having a lot of stomach aches at the time.  The test showed that my intestines were completely backed up, that I was literally "full of shit".  The dr. also mentioned my weight loss of six or seven pounds which is like twenty pounds on a "regular" sized person.  She was convinced I had a tumour in my stomach.  I escaped to the cottage for two weeks, living in fear.  In my mind I chose my pallbearers, who would deliver my eulogy and sitting down with my kids to divide up my jewellery.  When I went for the test the technician had me swallow a series of rather nasty things and took images from every imaginable position possible.  I suppose that because I had a very thick file (it's actually a big blue binder) full of dr's. notes and tests results dating back 15 years the head radiologist wanted to sit in on the session.  If you've ever had any x-rays or scans done the technician always tells you that your doctor will discuss the results with you at your next appointment.  Not this time.  The radiologist, a lovely Asian man of about 60 years old came out from behind the booth and told me himself that he saw no blockages, no tumours, and beautiful white lungs.  Needless to say I was ecstatic.

The following week I went, once again, to see the doctors at the hospital so that they could deliver the good news that I already knew.  I did my bloodwork, x-rays and PFTs.  My breathing had dropped another decimal point and I had lost two more pounds.  Now I await a couple of tests to see if my heart is strong enough to withstand another type of medication and they also put me on an antibiotic which I had been on before (for the lung infection that was discovered last year!) and an increase in my anti-rejection medication.  At the end of the month I will undergo another couple of tests, one to measure the bile level in my stomach and another to measure the motility in my gastro-intestinal tract.  In the meantime, I feel fine and trying not to think about about it.

As for my book, Breathe: The Journey of a Double lung Transplant Patient, I have put it aside for now and I'm working on two articles for the Huffington Post.  I'm also re-thinking the title of my book and pondering a book cover.

Stay tuned.


Sunday, 26 June 2016

sick and tired

I haven't written in here is so long so I must apologize to those who are following my blog.  Is anyone following my blog?  Anyway, let's go back to where I left off...

April was busy.  My niece got married to the guy she met on the first day of university.  This niece is very special to me (I have several).  Her parents got divorced when she was about 14 years old.  After that she came to me with various teenage problems.  I took her buy clothes, to the drugstore when her face broke out, stuff like that.  Now she is a lawyer (with a job!) and I'm very proud of her.  She was the most radiant bride I've ever seen.  So you'd think that my niece getting married took up one evening of my time.  Not so in our family.  The Friday night before the wedding her grandparents made a dinner for 50 people.  The next morning the groom had his Aufruf.  When a Jewish man gets married he is called to the Torah in synagogue the day before his wedding which is most commonly a Saturday morning.  However, it can actually happen any time between the engagement and the wedding on either Monday, Thursday or Saturday morning.  My husband had two aufrufs.  One here in Toronto at his parents' synagogue and another one in Edmonton (where we got married) the day before our wedding.  My nephew had his on a Thursday morning at his grandparents' synagogue so that his uncle and his cousin, who are very observant Jews could be there since Saturday is the Sabbath and one isn't supposed to drive.  Anyway, I'm babbling.  The day of the wedding started for us at 11 a.m. when the girl I had hired to do my daughter's, my son's girlfriend's and my makeup and hair.  Then there were the pictures before the ceremony, etc. etc.

The week after that was Passover.  We went to my sister-in-law's the first night as we always do.  No work for me but getting to bed after midnight is never good for my health.  The next night we had a seder with our friends.  Years ago I used to make the second seder in our house and invite 4 or 5 families who weren't obligated to attend one at the in-laws.  I haven't been able to do that for about four years so we just have a quiet evening with friends who also happen to live down the street and my husband went to high school with her husband over 30 years ago.

Then I got sick.  I got so sick that I made an appointment with the resperologists in the lung transplant department.  I despise going there and try to avoid it at all costs, save the once a year assessment that I have to go to.

Ok, so now I wait for the doctors to do their part and figure it out.  Years ago, when I first got sick one of the doctors I saw told me that the book of what the don't know is much bigger than the book of what they do know.  I hope that isn't the case this time.

quiet time

I am two hours north/east of Toronto at the cottage. When I got up early this morning and sat at the dining room table sipping my coffee the foliage on the other side of the lake was reflected in the water.  Water so smooth it looked like glass.  I came up here with my husband a couple of days ago but he left early this morning.  So it's just me for the week.  When I told one of my friends about my plans, she asked me if I was scared.  Scared of what?  Being alone? Solitude? A chance to write with no distractions?  However the main reason I came here is because it's going to be very hot and humid in the city all week.  The weather reports go something like this: "It's 32 degrees out there but with the humidex it will feel like 40".  As far as I'm concerned, that humidex is speaking to people like me, people who can't breathe all that well.  Up here, on the lake, it is still hot outside but I can breathe much better .

My last pulmonary function test (basically how well I can breathe) showed a significant drop.  Now I wait for the results of the CT scan that was done last week.  I was very upset to see this drop (I know how to read these tests by now).  Especially when the doctor told me that once your breathing capacity drops you can never recover it.  So here I am, breathing.

Wednesday, 1 June 2016

Tests you can't study for

First of all, I had started writing here at the end of last week and thought I had saved it but I can't find it anywhere!  Also, I realized I hadn't written here in so long! Partially because I've been busy (my niece got married, than Passover, than my kids coming home from university for the summer...) and because  I have been feeling terrible!.  So bad in fact that I went to see the respirologist on the lung transplant team.  I try to avoid going there at all costs for many reasons but here's just a couple of examples.

Two years ago I was admitted to hospital because of my headaches.  One day a psych nurse came to see me.  She explained that she was employed by the hospital 8:30 to 4:30 (not paid by our health care system) and she only worked with transplant patients who'd had their surgery 1 - 2 years ago.  Then she told me I had pre-existing anxiety disorder.  She didn't even know me! We had only spoken for about 5 minutes! Plus, as a psych nurse she is not allowed to make diagnoses.

About 5 or 6 years ago I was having terrible stomach aches and was sent to see a gastroenterologist. (Wow, I spelled that right).  He did a few tests and concluded that my system was backed up i.e.: that I was literally full of shit!  Nothing was done about it although.  Last July I came in to see the resperologist because I was having trouble breathing.  I did a breathing test and my scores had taken quite a drop.  A CT scan was done,  the dr. gave me an inhaler to use when I needed to and sent me on my way.

So, when I went in to see them last week they pulled out the two tests I mentioned above.  Seriously? I said to the dr. (by the way, you never get to see the same dr. twice).  You want to do something about these old tests now?  She showed me the CT scan and pointed out some white dots on my lungs which indicate infection.  So I've been walking around for a whole year with a lung infection?  Unbelievable.  Going for another CT scan on June 6th.  They also want me to do another gastro test.  This test involves eating half an egg sandwich (I wouldn't touch an egg sandwich with a 10 foot pole!) that has been laced with some kind of dye.  I am not doing that test.  At least not yet.

More soon! Keep reading and please comments.