Sad news to report to all of you following this blog

Hi all,
My name is Lisa, I am Bills daughter. On November 6th, my dad received an infusion for prevention of osteoporosis. When I went to hook up his IV on the 7th,(for his TPN) he was experiencing what we assumed were side effects from that infusion - general malaise and flu like symptoms. My brother, his girlfriend and their baby decided to meet me there that evening as we had all been trying to connect for a while and hadn't seemed to be able to make it work.  Right away we could tell that the problems he was having were quite severe and after not being able to find a thermometer we sent my brother to the drugstore to buy one and some ginger gravol to try and help with the nausea dad was experiencing.
After finding that my dad had a temperature of 105.8 or 41C and having gone through a septic central line a couple of years ago I told him he had a choice - either I would take him to the hospital or we could call the ambulance.  We decided on ambulance. My brother and his girlfriend left to pick up their other kids and I followed the ambulance to the hospital.  Upon arrival, his fever had disappeared and after countless blood tests that showed nothing they decided to admit him and wait for blood cultures to come back.
By Monday the 10th they still had no idea what was happening.  I went up to see him that afternoon and had to wear all kinds of infection control clothing just in case, but everything was continuing to come back clear.

He was posting pictures of himself in the hospital on his facebook and making jokes

This one he captioned "Latest thing in leg wear. Eat your hearts out ladies"

Tuesday I texted to say I was on my way up and did he want anything.  He asked me not to come up as he had developed a cough and any amount of talking made him worse. I asked again throughout the day if he was sure he didn't want me to come up and he finally told me that he really was fine but if I was that worried about him I could come for a short visit.  I decided to take him at his word and told him I would be up the next day after work.

Well, I got a call from the hospital at 1:30 in the morning saying that he had gone into respiratory distress and that they had intubated him. In shock, I made my way to the ICU to see what in the world had happened. I immediately asked if he hadn't signed a DNR as I knew being intubated was among his worst nightmares. No DNR as they did not believe that he was in that serious of a condition when he was admitted. Thus began the long wait.... since he had not left anything in writing stating his wishes if something like this happened, I had no recourse but to wait while they struggled to find some kind of answer as to what had happened. The doctors were giving very different information to me and to my brother as my brother was very hopeful that he would be able to recover from what he viewed as a setback.  We finally managed to convince the ICU doctors to back off on his sedation in the hopes that he would regain consciousness and be able to tell us for himself what he wanted.

Finally, on the morning of the 16th he woke up. I was already on my way to the hospital for the day and when I got there he anxiously indicated through the help of his nurse (he couldn't talk as he was still intubated) that he had something to tell me and that he wanted my brother to be there and for him to bring his baby so my dad could see him.  He had already "talked" to the ICU doctor and they needed both my brother and I there... Mike got there as quickly as he could and with the doctor my dad indicated that he wanted the breathing tube removed. As euphemistically as humanly possible (gosh - these doctors need to learn to face death as an option) they asked him if he realised the probable outcome of his decision.  He indicated emphatically that yes, he realised, but wanted the tube removed.

They removed the tube and he immediately became more relaxed. He held the baby, the baby drooled all over him and he was extremely happy. The nurses had indicated to him that if he was feeling nervous or anxious that all he had to do was ask and they would offer medication for the anxiety as well as for pain.

After many injections of morphine and anti anxiety medication, he eventually lost consciousness again and they finally removed his oxygen mask and he passed away shortly thereafter with my brother and I beside him.

The final, official cause of death was alveolar hemorrhage - apparently not common in Scleroderma  but common in Lupus. So, basically, he bled out into his lungs and although they tried giving him pulse steroids, it obviously had no effect and in the end his Scleroderma got the best of him.

I know that he was an inspiration to many people (although he often lamented the lack of comments on his blog even though he could tell people were reading it).  We knew that the Scleroderma would eventually get him but the suddenness with which it came was a huge shock to all that knew him.  Even though he was optimistic and involved fully in life, this disease ravaged his body in a way that I have not seen in other people with the disease. I thought that I had best post an update to let those of you who knew him through this blog know what happened.

Love everyone every chance you get...

-Lisa

Meditation

It's been a while since I posted about scleroderma and the benefits of meditation and since I've finally got back on track with a regular meditation practice, I thought this would be a good time to update.

A couple of months ago I ran into a former meditation practitioner from my old sangha. We ended up planning a sit at my place for Wednesday evenings. We invited others and can have anywhere from 2 - 4 people show up.  I also joined a group at a nearby branch of the library for a Tuesday noon hour sit. Having others to practice with on a regular basis has always been a great motivator for me and it's working. I'm now doing a minimum of two 20' sits in a nearby park every day, weather permitting. And instead of looking for excuses or just being too lazy,  now look forward to my daily sits.

And I'm feeling much better for it. My emotions are levelling out again - less prone to anger for one thing. My dealings with others have taken on a more compassionate and empathetic nature. Physically, I have more energy and less discomfort.

What took me so long?

Life is good.

Wheelchair Problems

Pictured above is my 2 1/2 year old Permobil C300 wheelchair.

A week and a half ago I was wheeling along one of London's busier streets when, bam, out of the blue, I found myself lying on my back on a small pedestrian island in the middle of the street. There I was, completely helpless, dazed, confused and at a total loss as to what had just happened. Fortunately, I had my phone in my pocket and as I was struggling to extract it a woman approached to ask if she could pick me up.  I should explain that I was still seated on the actual seat part of the chair, it's just that my head was just a couple of inches from the ground and my feet were up in the air.  As I was explaining to the lady that I didn't think she would be able to pick me up, a gentleman on a bicycle stopped and, between the two of them they got me and the seat in a semi upright position.

I balanced the seat on the post where it broke off at the base (see picture) and told my good samaritans I would be fine, thanked them and sent them on their way. But I wasn't fine, I was a wreck. I was shaken, felt weak over my entire body as well as nauseous. In short, I was a mess. Fortunately, I had the number of the dealer where I bought the chair on my cell so I called them. At this point it was 4:55 and much to my horror, I got an answering machine. I left a frantic message, giving the wrong address, I realized later, and hung up. In a state of panic, it was now 4:57, I decided to call again and my heart leapt for joy when someone picked up at the other end. I explained my situation and was put through to the service department.  Not surprisingly, I could tell from the service person's voice that he wasn't exactly overjoyed to hear my voice. I was told that he could pick up my chair but not me. I asked if he couldn't bring a loner along so he said he'd see what he could do.

Jumping ahead, at 5:30 the service guy arrived with a loner and I made my way home. I had a meeting scheduled at my apartment for six and was concerned that I wouldn't make it on time. To make matters worse, the loner chair was painfully slow, probably about half the speed of my own chair.

I just made it home on time but was not exactly 'there' for the meeting. After everyone left, my nurse and a woman from the dog rescue place arrived and again,  my mind was still on the incident. I was still shaky and emotionally upset. The nurse asked if I was okay physically at which point I realized my neck was sore. After they left I took an extra pain killer and finally, being alone, found myself crying and thinking about the last couple of hours. All the scenarios went through my mind. What if the post had snapped in the middle of the busy intersection, what if I'd taken the river trail home, what if my head had hit the pavement...?

Sleep didn't come easy and it took a couple more days before my emotional roller coaster ride levelled off a bit. My shoulders and neck were sore for a couple of days but seem okay now. I still find myself a little short tempered and although I tell everyone I'm fine, I'm not so sure. This incident really shook me up. I guess it made me feel just how vulnerable I am. I am also incensed that something as crucial as a wheelchair should break down like it did. I don't know if I'll ever feel totally confident in my chair again. After all, what's to stop the same thing from happening in a couple of years from now.

I got my chair back in a week along with a $165 bill - emergency service call and two hours labour. I refused to pay so the service person said he would have someone call me. That was 2 1/2 business days ago and I haven't heard anything yet.

In my mind, this never should have happened. Permobil the manufacturer, should take full responsibility for a faulty part and there's no way on earth it should cost me a single penny.

Update: Yet another week later and I got the bill for
$165 in the mail.  I have composed a letter which I plan to send off the first of the week. Not happy.

UPDATE:
My physiotherapist from the arthritis society called Motion special tie where I bought the chair and the manager said the bill should never have gone out and that there would be no charge.
Two weeks later I got another bill stamped in red "OVERDUE". I called and, again was told that it was an error and to ignore the bill.
I decided to send my letter* to the Canadian rep for Permobil with a cc to Motion Specialties. Heard nothing from Permobil but the owner of Motion Specialties called and old me that after discussing the matter with head office, they wanted my chair for a day to rectify the problem and hopefully prevent it from happening again.
That's been done and I am happy with the solution.

*

August 7, 2014

Re: Permobil C300 chair problem

Alan Boyd

Permobil

I am writing out of concern for an incident which happened to me several weeks ago.

As I was wheeling down one of London’s busier streets during the evening rush hour, I suddenly found myself lying on my back, on the ground in the middle of a busy intersection. Fortunately this occurred on one of those little islands in the middle of the street – a couple of seconds earlier or later and I would have been in real danger of being run over. After a couple of minutes a couple of pedestrians managed to pick me up and I was able to half stand half sit while I balanced the seat on the middle support post which had just snapped off at the base.

I was pretty shaken up by the event but fortunately was able to contact Motion Specialties who came out and picked up the chair and provided me with a loaner so I was able to get home.

Furthermore, I was an emotional wreck for several days after the incident. My nurse arrived shortly after I arrived home and he was quite concerned about my state. Imagine, if you will, me, lying there in the middle of a busy intersection at rush hour unable to move or help myself. I was totally at the mercy of passersby. I was shaking uncontrollably and could barely think straight imagining what my fate might have been had the post snapped in the direct line of traffic.

My concern now is twofold. First of all, if this happened to me, there is a very real possibility of it happening to someone else if it hasn’t already. And perhaps the next person may not be so fortunate, either hitting their head on the pavement or being struck by a vehicle. Secondly, is this going to happen to me again after another two and a half years? I have to admit that this is a real concern and even now when I go over a bump I can’t help but see myself falling again.

And so, my hope in writing this letter is that Permobil will look into this and take the necessary steps to ensure that it doesn’t happen again.

Thank you for hearing me out.

Sincerely,

Bill Birtch

Cc: Dave Farr, Motion Specialties

       Margaret Vaz, Physiotherapist, Arthritis Society