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

2000 miles

While I was at the hospital yesterday for physio, I noticed that the odometer on the wheelchair had reached the 2000 mile (3200 km) mark. That's averaging just under 700 miles a year. The new batteries were installed at 149o miles so I've done over 500 miles (800 km) on them since July 4th. Pretty impressive. 

Big Decision

A couple of days ago I decided to go vegetarian. Meat doesn't hold the same appeal it once did and it plays havoc with my gut so why not.

A FB friend asked if I wouldn't miss bacon. I told her that I haven't eaten bacon since I contracted scleroderma - too greasy/salty/rich. In fact eating with scleroderma is all about giving up the things you love to eat but in the long run, they're probably the foods that aren't good for you anyway - french fries, hamburgers, lasagna, ribs, fish and chips, the list goes on but in their place, now that I've committed to vegetarianism, I'll be on the lookout for new ideas.

So, to mark the occasion, I found a recipe for mushroom gravy, went to the market and bought some cremini and shitake mushrooms and proceeded to make the recipe. It was a lot of work but boy was it worth it. It may just be the best gravy ever. I made some substitutes like fresh herbs from my garden in place of dry and regular flour instead of rice flour (gluten free isn't an issue with me) and ghee instead of olive oil.  Froze most of it and plan to take my own gravy to Thanksgiving dinner at my son's next weekend. Today, I cooked up some mashed potatoes and slathered them with the gravy. Absolutely delicious. Vegetarianism might just be okay despite some trepidation.

Of course, because I am on TPN which supplies all my nutritional needs, I won't have to be concerned about making up for the lack of meat.

Update: Thanksgiving dinner at my son's. As planned, I stuck to mashed potatoes with my mushroom gravy, lots of mushroom gravy!  Didn't miss the other fixin's at all. Still, I ate too much and was a little bloated last night but not enough to ruin the good times. BTW, the gravy had been frozen and wasn't affected at all. Tasted jut like the first day I made it.

Will's just over three months now. Held him for quite a while today - a record I think. And, a first, I made him laugh. Sure do love that kid.

Antibiotics for Gut

Grandson at 3 months

Had a visit with my rheumatologist this week. She prescribed flagyl to clean out my gut as I'm not able to eat again and will set up an appointment for an infusion for my osteoporosis. Other than that, nothing to report.  Don't have to go back for a year which is a first as I've been going every 6 months. 

As for the food intake problems. Things have gotten to the point where they were last winter (January/February?). Every time I take food orally, I vomit and get diarrhea. The last time my GP prescribed flagyl, 250mg 3/day for 10 days. It worked and I was able to eat uo until recently so as much as I dislike taking it, if it'll give me another 6 months of eating it's well worth it. Durig the ten days I am only eating 3 crackers on some days to take the edge of my hunger pangs and that's it. Well, almost, as I am allowing myself the luxury of a morning cup of coffee which doesn't seem to be doing any harm and the pleasure I derive from it is worth any problems it may cause.

Selfies are not really my thing but every once in a while I figure hey, why not.

Took this on my way home from the hospital the other day.  Two days earlier my PICC pulled out, only 1/2 way, overnight. I spent the afternoon in emerg only to be told that I'd have to come back the following day because radiology couldn't fit me in. No big deal and it's a pleasant 45' ride on the wheelchair to the hospital, the weather was perfect so why not enjoy it.

Overall, it's been a lousy week- not eating, vomiting and diarrhea off and on since last weekend. Consequently I've been feeling tired and even a bit depressed which is very usual for me. I was in the bank the other day and the ATM refused my card, then I couldn't get it out of the machine because of my hands. The last straw was when I dropped the envelope with my deposit in it. It was pretty busy and I just wanted to cry because everything seemed like a disaster. Of course I wouldn't allow myself to cry, and just proceeded to the teller and did my banking.

Some days, very few and far between fortunately, it just gets to be too much.  My rheumatologist once said to me "It's okay to be down sometimes you know." And she was right of course but I don't have to like it.

Today is another day, I'm feeling much better both physically and emotionally, and life is good again.

Li'l Will

This picture of my grandson was taken just a couple of days ago. He's now about 2 1/2 months old and I am still overwhelmed with emotion every time I see him or his parents post a new image on FB. I knew that being a grandpa was going to be pretty cool but had no idea what an impact he would have on me. There truly is nothing like it. I am blessed.