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

Scleroderma Walk/Run 2011

Well, we did it. We pulled off another successful awareness/fund raiser event surpassing our goal of $20 000 and almost doubling last year's total of $11 000. And there's still the online donations and BBQ to be aded to the $21 000 we've already tallied.

Thanks to everyone who helped make it all worthwhile.

(Chris Trowell, Bill Durst & David Wahl performing at our concert)

Jill Martin, a member of the London branch of the SSO put this together so I've asked her permission to post an edited version here. Thanks Jill for your enthusiasm and support in this project.

THANK-YOU!!!

We want to Thank everyone for coming and helping Us expand the Awareness of Scleroderma. The money raised at this Concert will all go to the SSO. We want to thank the Bands for donating their time and talents and to the Eastside Bar and Grill for the free use of there facility and to all the Staff. And thanks to all that have helped with the Concert and bringing this idea into reality .I hoped that all left enjoying this event and also took with them with a much greater understanding of this disease SCLERODERMA. Most of all a bit more knowledge of what we as patients deal with.And that some might just be able to recognize someone with Scleroderma now and can now say YES I’ve heard and know something about that disease.

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LAUGHTER AND MUSIC. Laughter and music have been proven to help many Chronic Diseases. It raises your heart rate and can improver your immune system and lower blood pressure and even reduce pain .Most of all one gains a Positive Attitude. Laughing reduces stress and promotes relaxation. "Laughter Can The Best Medicine." Several Universities In the USA are doing studies/surreys on Laughter Therapy. Music can sooth the Beast." BUT It also may be able to help your body as well. Studies have shown that listening to Music We Enjoy actually can cause tissues in the inner lining of the blood vessels to dilate improving blood flow. Listening to Music you Enjoy can expand blood vessels by as much as 26% and in Contrast listening to Music you don’t like can make you anxious and cause blood vessels to shrink thus less blood flow.. Both Laughter and Music have been found to have similar effects on blood flow through the body. There was plenty of both at this our Concert . It now over and it went very well .We accomplished our goals of raising some very needed funds for SCLERODERMA and building some more awareness of this disease.........We had our trials and worries but in the end it all played out well.And building some more awareness of this disease and its problems for us as patients. It was well attended and all seemed to enjoy the whole event. There was a 10.00 cover charge that was totally donated to our cause.

The day was perfect---Weather wise-- The sun was out and many attendees enjoyed the outdoor patio as well as the cool air in the Bar .People began to arrive shortly after 3:00pm and that put all our minds at ease. As we all worried and wondered would there be anyone but us volunteers and band members etc that would show up???HEHEHE.We had just enough time to put the finishing touches on everything as the first band warmed up and got ready to Rock & Roll. We were having some very talented local bands play that day Bill Durst , Chris Trowell Band ,Robbie Antone's Blues Machine . A great addition came at the end of the evening with a big finale of all the bands playing together in what they call a JAM.It brought the house a rocking to everyone's delight.The bands donated their time and talent to us that day and all gave 110% From the sound system and all the bands voices and instruments the whole Bar sounded like a big fantastic party A HAPPENING EVENT!!!

The owner operator of The Eastside Bar and Grill also graciously donated the establishment for our event.The staff worked very hard all day and with a steady flow of ppl the staff was definitely kept busy serving drinks to those that were hot and thirsty and to those that were hungry from the yummy smells coming from the kitchen.I had some of their fries they were hot enough to burn you tongue and so crunchy that they were addictive to eat.Needless to say a whole basket of fries were finished quickly at our table.HEHEHE

We also had many prizes donated and had draws during the breaks. We had gift baskets of>>Fruit and Candles and Bath Assessories and Pet doggie and Kitty Treats....Gift Certificates from a Hairdresser...Bowling night at Fleetway....Kingsmills one of London's oldest Dept Stores ....Wine glasses....And several corn/oat heating bags....T shirts and Snow fleece tops....And Tickets from 102.3 BOB FM Radio to our Annual Blues Festival In The Park.

We also had three 50/50 draws.The door prize was a Framed Print (click to see) by Bill .It was a composite made up of bits and pieces from his Graffiti Series of London Ontario .

A SPECIAL ACCOLADE MUST BE GIVEN TO Bill's family and friends and all the great supporters he had behind him . They all worked endlessly and with great enthusiasm from the beginning stages of this idea all the way to its wonderful ending.

Scleroderma Society, London Chapter - 2009 Events

Here, we are, another year has come and gone and a new one has just begun.  I don't make new year's resolutions but there are a number of things I want to accomplish this year.

First off,  as one of two key contact people for the local chapter of the Scleroderma Society of Ontario (SSO) I am organizing  an awareness/fund raising event to take place in June to coincide with scleroderma month.  The tentative date is Sunday, June 7 and the event itself will take the form of a music concert with the help of  three or four local blues and rock bands.   I have never done anything like this before but with the help of my daughter, Lisa, and her partner Dave, who are very much a part of the local music scene, I think we're up to the challenge.   Who knows I may even work up the courage to join in on a song or two myself - no promises though.

London has also agreed to host the AGM of the SSO which we will combine with our fall meeting in September.  We are hoping that Dr. Janet Pope, our local and internationally recognized scleroderma expert, will be able to take time out of her busy schedule to be guest speaker.  

And then there's the spring meeting to plan for as well.  Exciting times for the London Chapter of the SSO.

Happy New Year everyone.