07:35
I slept well, and and up by 7. I need to eat something and take all my pills. I should be doing my exercises. I had sciatica this morning. First time in a long time. I blame the position I was in when I fell asleep on the bed yesterday after the doctors appointments.
I have an exercise sheet by the physiotherapist and should be doing those now.
My back needs care. A bad back and losing a leg could be a bad combination.
I wanted to install my new solar inverter today, but first need to rewire my solar panels and batteries.
I just tried to get up from the toilet, not using my left leg. No way.
I want to write all about the conversations with the amputation people yesterday.
It is cold this morning, and have on a track suit.
The place where I live is 40 sq/ms. (360 sq/ft). That is about the size of Maddie's bedroom where she stays now. I need to make more room somehow.
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18:00
I'm tired and it will be an early night.
I managed to install a grab rail by the toilet. It is strong, but two are needed. Just one grab rail, on one side only, is not ideal. Getting up using only the one leg is possible, but not easy. I'll install another grab rail tomorrow.
My new solar inverter installed and working. At least I think
it is working. I had to rewire the panels and batteries in series instead of parallel, because the new system is 24 volts instead of 12 volts.
A few minutes ago, the solar panels were supplying the house, even though
the sun was almost set. Then I turned on the computers and fans. The
solar panels could not handle that load. The box switched to the batteries and they came
online via the inverter. But they have not been on charge all day, so
they soon complained, and the box switched over to the grid. The lights
never even flickered or blinked. Solar continued to charge the batteries
while the grid supplied the house. Then the sun set, and the grid
started charging the batteries as well as the house. Tomorrow will tell
the whole story when the sun comes up onto the panels.
There are numerous advantages to having a planned amputation. The prosthesis guy said the main reason more above knee amputation people don't use prosthesis (only 20% do) is because a prosthesis requires muscles that they had never used. The first experiences are not pleasant or productive. Hamstrings and quadriceps are no longer hooked to anything that moves, so they do nothing. Many people keep trying to use them, and that is frustrating. The muscle that moves the prosthesis forward are your hip flexors, and the glutamus move the leg backwards. With advanced notice, like I have, I can work on strengthening those muscles before the operation.
Yesterday I had 5 interviews. The surgeon was in surgery, but left a message that he still didn't yet have the new PET scan pictures.
1. Dietitian - I told her my full story from scorpion to now. She listened, and wrote down everything about my eating. She looked at all my blood test results. Bottom line was she wants me to eat more eggs and protein. Sort of a waste of time talking to her. Maddie has been telling me to eat more protein for months.
2. Psychologist - Again, the full story from scorpion to now. She said that I seemed to have the right attitude, and the right amount of anger and the right amount of sadness. I told her that the thing that bothers me most, is that even getting through all the amputation palaver, I still have Angiosarcoma. The whole leg thing is almost trivial compared to the Angiosarcoma.
If there was no Angiosarcoma at all, and I still had to lose the leg, I would tell them to take the leg, let me heal, give me a prosthesis, and get out of my way, because I have a life to live. The Angiosarcoma is the elephant in the room whenever I talk to these amputation people.
3. Pysiotherapist - She will be in charge of my exercises, and getting me ready after the amputation. She then sort of passes me off to the next lady.
4. Occupational Therapist - This seems to be the person I will have most contact with after surgery. She teaches the new life. From toilet use, crutches, wheel chair, driving, and to using the prosthesis. She says she works very close with the prosthesis guys. They handle the mechanics, and she handles the skills. She said that some times the two groups overlap and I may feel like I don't know who to talk to. In that case I should talk to both.
She gave me a list of stuff I should do now.
Think about a different car. One that has an automatic transmission should be all I need, since it is my left leg that will be amputated.
She advised that I now try many daily tasks using only my right leg.
She advised I get a toilet seat extension to raise up the seat.
She suggested grab bars for the toilet, and the shower. Also non slip strips on the shower floor, and a shower chair.
I tried some things today with only the right leg. It is very hard. I absolutely cannot get up from the toilet with just the one leg.
I tried to get to some boxes in the shed. I couldn't move the tool box. I couldn't move the ladder. With two legs, I can do all those with a cup of coffee in my hand. With one leg I could do nothing, even with both hands.
She said I will get tired of her talking about COB. Center Of Balance. So many people start moving around after an amputation by hopping, or using crutches like three legs. She says if I want to learn the prosthesis soonest, I will use a walker more than crutches, and almost never a wheel chair, and use the good leg to take half of my weight, never all of it. So when I get a prosthesis I will automatically put half my weight on it, and half on the good leg. If I do that then I am 90% of the way to independence with the prosthesis.
I will surely listen to this lady. She talks sense.
5. Prosthesis guy - Cool dude. Passionate about prosthesis technology. We chatted a long time. He was there with his assistant.
First thing he asked was which Medical Aid I am on. I told him Discovery Classic Priority. He and the assistant smiled. He says I am on a very prosthetic friendly plan. This plan even has a yearly maintenance and upgrade payment for prosthesis. Discovery says that proper full time use of a prosthesis actually lowers overall health costs. They say that if you actually use the prosthesis, then you will want a better one every year.
He explained that modern prosthesis are modular. I will have a socket, knee, shaft, ankle, and foot. Cheaper feet don't have ankles.
Medical Aid will not pay for the best in each. They pay for just below average. He says that the stump socket is by far the most important. If it fits poorly, or causes pain, then all the other fancy stuff is useless. He will spend all the money from the medical aid that is necessary on the socket, then we will use the money left over for the other things.
He explained how a golf leg is useless for walking, and a walking leg is useless for sports. He has one customer that does roofing. He says he can build a leg to do anything, but nobody can build a leg for everything.
After talking to me, he was happy to say that an unlimited walking prosthesis is one of the cheapest. He said that a good foot is more important than a good knee for unlimited walking. He has one customer that had an above the knee amputation that just hiked the Fish River Canyon. That is a 90 km, 6 day, sandy, and rocky, carry all your own food and camping gear hike.
He said just be glad I don't play squash. That is big bucks.
He said they have loaner knees and feet. If I come past the factory, they will be able to loan a different foot or knee for me to test. I asked where the factory is. What luck. It is about 1km from my house. He laughed and said he expects to see me every few weeks to try some different knee or foot. They keep about 15 different knees in stock for tryouts, and about 10 different feet. I can see me there every week to try something different. It takes about 15 minutes to change a knee or foot.
I am excited, but then I remember, that there is still that elephant in the room.
He said he was thrilled that I am a computer, Arduino, aircraft mechanic kind of guy. He says that is good because there is nothing that will be magic or complex about the prosthesis. I'll also be able to trouble shoot 99% of it by myself.
I asked him how long it would be after the operation before I could get a prosthesis. He said his quickest customer walked without a cane or crutches after 15 days. The average is 3 months, and if there are any complications, it can take years.
He said I will be much better prepared because I know what is happening. Most people wake up without a leg after an auto accident. They have a long way before they are ready.
I asked why there is only a 50% survival rate after 12 months from through-knee amputations.
And there was the elephant!
In a trauma accident amputation they usually can't do a through-knee amputation. Only with a planned amputation, is through-knee most common, and therefore, there is some underlying reason or disease to do something so dramatic as a leg amputation. Most planned through-knee amputations are done on very sick people.
I asked what I could do to ensure a quick and successful transition to the prosthesis. He said that I have the right mental attitude, motivation, and good physical strength. He said to do all the exercises the occupational therapist says.
He says the biggest delay to getting a healthy stump, is falling. He say a large portion of his clients do something like jump out of bed to go pee and forget they have lost the leg, and fall on the stump. This causes trauma to a delicate, healing stump. A fall can delay the prosthetic process by months. He says the occupational therapist will suggest things like sides to the bed, and maybe even tying yourself when sitting, so you can't move out of a chair till you untie your self, or other tricks like that.
Wow this was a long blog.
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