I went to the hospital in Vancouver last Thursday and saw one of the study doctors. My regular study guy was out sick and I had a new fellow. He didn't have the ultra sound results from November in the file with him. He didn't know about the ascites either so got all the info from me and said they would call my family doctor and get them to send a copy of the ultra sound. I told him the request for the ultra sound came from them not from my doctor. He was confused as my guy wasn't there and this wasn't his gig but he was very nice and sent me off for blood work and then followed me downstairs as he had forgotten to get me to sign stuff and asked me to come back up after the blood.
We had a chat then and he said he thought I should be seeing the specialist (Dr. E) there more often that I am. It seems like that when Dr. E saw me last time and told me there were no drug trials and no new drugs right now and so there was nothing they could do for me at that time that my doctor (Dr. C) at that point stopped forwarding on any test results etc. The fellow on Thursday said I should be coming in at least every 6 months to see the specialist etc. so to follow up with my doctor (Dr. C) and ask to go back to the specialist (Dr. E) and in the mean time Thursday's doc would let him (Dr. E) and the other drug follow up doc know what was going on. Ok well that sounds totally confusing but there ya go. That's how it happened and that's what he said.
I have heard from Disability to say they have received my application and so far it has been accepted and now it goes to the medical team to decide if I fit the criteria. That could take another 60 days. I have also had to apply for social assistance which I totally dreaded and felt horrible about having to do. As it turns out it is mostly done online. You then get a phone call and an interview on the phone. She then tells you what documents you need to have to show them and gives you five days to get into the office and give to girl who photocopies it all and gives it back. Then you go home and within a few days they call and let you know if you have been deemed eligible. I did what was asked and was deemed eligible. Then they called and wanted me to fill out a disability form for the province as well. If I am deemed eligible for everything it will give me just barely enough to live but I'll have to give up my car. I am not stressing yet and still trying to take all this one day at a time.
My grandson is a gorgeous little bundle of snuggles. He has chubby kissable cheeks and they get kissed lots. I get to see him a couple of times a week and am loving it. Taking tons of pictures. I'll include one or two before I close off.
I'm tired and all of this worry and trying to keep paperwork together and separate for different claims or offices is tiring. The diuretics are still working and that makes me happy. I have a hard time now keeping weight on and am eating several small meals or snacks a day. Lots of fresh veggies and fruit too. Grapes were on sale this week along with California strawberries and oranges so I have stocked up on all three. I've been making lots of homemade soup and it works out well for me. I can throw it all in a pot and snack at it for a day or two and then freeze what is left for a soup dinner one night. No fast food and I am trying to stay away from all processed foods. Cereal in the mornings to take my pills. Brain power is cloudy on some days and some days are better. I worry some days that I am losing it. I have started taking a Spanish beginners course and am enjoying that although the concentration is iffy some days.
Well that's me somewhat up to date. Pray for the people of Japan.
2 comments:
Hi Anne
Thanks for your comment on my blog. Good to keep in touch. Glad to hear your ascites is ok at the mo. From what Martin on HepUK says, the combination of the endoscopy results and your ultrasound (should your medics be able to find it again!) should provide the jigsaw pieces of how the cirrhosis is doing. What both you and I need is to be told we are still compensated and not moving toward decompensated. Decompensated has symptoms of ascites, portal hypertension and hepatic encephalopathy, and moves you closer to needing a transplant.
The ultrasound should measure the size of the spleen/maybe dignose or rule out portal hypertension. Have you been told if the spleen is normal, I cant remember. From what Martin says the low platelets usually mean an enlarged spleen.
The endoscopy will check for varices in your esophagus and perhaps check the lining of your stomach for enlarged blood vessels. Lets hope the endoscopy doesnt find any. If it does, then the jigsaw already shows a picture of compensated cirrhosis possibly moving toward decompensated.
Even though you are not currently on any trials, and I assume the Vancouver hospital see you mainly to keep in touch should something come up, my personal view is you should be having checks as often as possible on the cirrhosis. Finn, on HepCuk, described his doctors as having an 'aggressive attitude' toward monitoring it. My team I think is too laid back (i.e this endoscopy is taking for ever to get the box ticked, and I still havent been told how my spleen is since the last CT scan) My consultants view is there is nothing that can be done, but my view is there must be lots that can be done to stop the progression. I dont see why my cirrhosis should progress at all! But then again, I dont know how many years my liver has been that bad.
Anyway, you need to be around to see your grandson grow, so make sure you get checked as often as poss, maybe every 3 months? I get bloods done quite a lot, but LFTs dont really tell you how the cirrhosis is, just how the Hep C inflammation is.
Anyway, enough bossing from me. I'm working on my Mediterranean food plan ideas!
Hi Fiona,
My spleen was already enlarged. I don't remember how much but it was larger than it should be.
That is exactly where we are at. We need to know if we are compensated or decompensated. I think I have fallen through the cracks a bit because I held back for so long in going to the doctor when the acites started to be obvious.
The progression is because of the hepatitis. If we had no hepatitis beating away at out liver every day then the progression of the cirrhosis should stop. That is the thing. How to stop the hepatitis from continuing to beat the hell out of the liver.
I am going to be a little more aggressive and ask to go back to the specialist and see what he has to say at this point.
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