Maintaining

Isn't that a glorious word!! It is to me today. I am down to one a day of both of the diuretics and it is holding. No weight gain and my kidneys are much happier :)



According to my doctor as long as we can maintain then all is good for now. My counts aren't great but not horrendous either. The only one I worry about these days is my platelets and that is for drug trials and it is at 85 still. So all good for now.



I phoned a couple of weeks ago to the health unit here to see if they have a dietician on site and they don't. They gave me a number and the nurse told me that with my cirrhosis I can access the dietician at the hospital for free, I just need a referal from my doctor. I got that today as well. They fax through the paperwork and then the hospital calls and sets up the appointment. We have that big, beautiful hospital a few blocks away so I'll be going there.



Outside there are big snowflakes drifting down. They don't seem to be sticking but they look pretty going by. We've had some weird weather around here lately. Sunshine but cold, warm but raining. Usually by this time of the month we are edging on towards Spring and already we have bulbs coming up. But on the other hand we've had some of our big snowstorms in February too. The garden stores are starting to bring in the primula's. My friend Lynnie bought me a pretty yellow one and I brought it home and put it on the desk for a minute. I came back and Nemo was eating it as fast as he could. NO plants are safe in our house. Buying a plant or flowers and then having to keep them up on the highest surface sort of takes away from having them in the house!




My brand new baby grandson is doing great! Gaining weight and sleeping well. I can't wait for the warmer weather when we can get out and walk more. He'll love the park and the stroller I'm sure.



All in all things are looking brighter. Haven't heard from disability yet................ One day at a time. :)

Endoscopy

I saw the doctor on Friday and have an appointment for the endoscopy for the 31st of March. He cut the diuretics back more and hopefully it will be enough to maintain a balance. He seemed quite nice and I liked him and he is at the Abbotsford Hospital which will be much nicer.

Counts

December 24, 2009

ALT 120
AST 89
Platelets 85

April 30, 2010

ALT 122
AST 107
Platelets 79

December 14, 2010

Platelets 109

January 14, 2011

Platelets 85

So, where are we at?

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.