Well, where to start.....
I guess I'll start in June. No treatment for me, nothing available so need to maintain is basically what doctor told me. I was contacted by the hospital in Vancouver about the last drug trial I started and couldn't finish. They wanted me to be part of the follow-up from the drug trial. So for 3 years they want to see me every six months to do bloodwork and ultra sounds. They are following progression of the disease as well as checking to see if the virus has mutated. They are also keeping me in mind if any further trials become available that I could fit into.
I started struggling more as the summer wound down and was really unable to go for very long without a rest to recoup and then I could go again. I was very worried about job hunting and my memory and cognative abilities. I was getting very forgetful, losing words in mid conversation so you sit there with a total blank in your head, couldn't concentrate on things, I was easily distracted and had a really hard time staying on task. I am a bookkeeper and payroll person. That requires concentration and being forgetful just doesn't cut it.
I also knew I was not capable of working at a physical type job or even one that required standing for long periods like a cashier. The worry was setting in and I was getting more and more stressed. At Christmas 2009, Mom and I had talked about another cruise in the future and she called and wanted to take us both on a cruise from Vancouver to LA as the ship made it's transition from the Alaska run to other runs. It was a one way cruise and then fly home to Vancouver. I started trying to lose weight for the trip as my stomach seemed to be pretty fat. Nothing worked and I just kept getting bigger.
We went on the cruise in September and as much as I enjoyed it I was exhausted by the time I got home and it took me a week to recoup. We had been on a cruise two years earlier to Alaska and I could really tell the difference in my energy level. I had to go for the hospital ultra sound and it took a few months to get in for the appointment out here in the valley. By then my stomach was huge and I was not feeling great. I went to my family doctor and he said my abdomen was full of fluid and he wanted to send me off to the hospital and have it drained. That pretty much freaked me out and I was not a happy camper. I asked if we could try diuretics first.
He agreed to let me try the diuretics for one week and see if it was helping. He gave me a prescription for 2 different ones. Aldactone 100 mg 3 times a day and Teva-Furosemide 40 mg once a day. He weighed me and I was 152 lbs. He gave me an appointment for the following Friday. After taking the drugs all weekend I was down to 137 lbs so I had lost 15 lbs (Doc said that was equal to about a gallon and a half of fluid). When I saw the doctor he said I could stay on the diuretics as long as they worked and there weren't other side affects from them He said I could cut back on the one I take 3 times a day if I felt crappy. So I did and was taking two a day along with the other one. The last bloodwork is now showing that my kidneys are struggling from the diuretics and the extra work they are being forced to do. Also my platelets are falling again. They are back down to 85 now. So for now he has me cut down to one of each of the diuretics a day and I go back in two weeks to get the bloodwork checked again. In March I head back to the drug trial people for the next 6 month appointment.
I am tired and don't really recoup anymore if I do too much. I battle nausea most days. I am trying to not eat anything pre-packaged or any fast food and am being very careful of salt content when I shop. I've been making homemade soups and using fresh veggies as much as I can. I'm still losing weight gradually. Down to between 130 to 133 most days but have seen 129 and that scared me into eating all day off and on.
My EI has run out and I applied for early CPP which we can do in Canada at 60. It is a miniscule amount but I am hoping combined with other sources it will help. I have also applied for Disability from the Federal Government. I am going to have to go to Social Services and see where I'm at with this all and when I get the final amount of what I am going to have to live on each month I will have a better idea of where I stand.
So that pretty much brings this up to date on the important stuff. Life still goes on and I have my family and some very good friends that I love like family. I have a brand new 4 day old grandson who is absolutely precious. I made my peace with Al quite some time ago and we touch base about the kids frequently. I have my dog and my kitty who brighten my days so much. I am still hoping to get this all under control and just maintain. I am going to see if I can see a dietician at the hospital or health unit and get some advice on diet. Lacey (my little dog) and I are waiting for some warmer weather so we can get back to our daily walks.
I'll try and be a better blogger and start using this blog more often. I am going to try and gather all my counts and numbers and might just post them here so they are quick to find in future when I am comparing.