Round 2 done

Round two done and I am home and feeling crappy.  Had a restless night and threw up a couple of times during the night but today I am up.  He banded 3 more and the note said to repeat in 3 or 4 months.  I have to see him again in 6 weeks so I'll hear about that then.

Banding again

Well today is the day. Banding round 2.  I have an appointment at noon at the hospital so should be out in a few hours and home again.  Then I should be good for at least 6 weeks until I have to go back and get his results and whether or not we need to do it again.

I just got back from 3 weeks in the Okanagan and I had a wonderful time.  I stayed with friends that I have known since our oldest boys were babies together.  We have been through all of the kids and grandkids and ups and downs of each others lives ever since.  Actually they are now family really.  My middle son came up and spent a few days too and their kids and grandkids were out and we had a really nice time.

We went camping for a weekend in the motorhome up to Seymour Arm in the Shuswap.  It was a cloudy weekend so not many people about.  We loved it and the dogs had a great time.  They have a little dog like my Lacey so they had each other to spend time with and go for walks with each day we were gone.  They live on 5 wooded acres with trails so the dogs and I walked each day.

When I first got up there Sacha (their dog) was not wanting to leave her pillow and go for walks with us.  So I made her come and packed her part of the way then put her down and she headed straight for home without giving me a backwards glance. So the next day I carried her to the farthest point of our walk and then put her down and again she headed straight for home but this time she at least looked back at me as she disappeared down the trail.  By the end she was ready for the walks.  She'd get up and stretch and then head for the door with Lacey.  I still had to carry her to the farthest point but when I put her down she would stay with us and walk back with us.  Victory!!  Sweet little thing she is.

Banding Follow up

Thursday May 26th UPDATE: I heard from disability and they have approved it. It does not give me enough to live on though so now I pretty much have to wait until they start sending the cheques and then go and see a worker and see where this puts me. One move step done, one day at a time.

E. A.

I went today to see the doctor who did the banding.  He is very nice and said that the varices were large.  Something about the machine holding 7 bands and he did three of the varices with 2 each and then the 4th one he did a single band.  He says I have to have it done again. I asked how often and he said until they are all gone.  I asked if they would ever be all gone and he said yes, we are going to obliterate them! So I have to go for another endoscopy on the 7th of July.

I'm still waiting to hear on the federal disability.  The provincial one turned me down as I don't need a "device" (wheel chair, walker etc) or an aid to help me through the day.  They are the ones that made me apply for the provincial one and I didn't want to because I didn't think I fit the criteria and I guess I don't.

Other than that not too much new.  Just waiting, waiting and more waiting.

Busy month

This is what the weather was doing on the 14th of April!!  But since then we've had a couple of warm sunny days and Spring might actually be thinking of arriving!!  Yay!

It's been a busy month.  I took me a couple of weeks to get used to the antiD's and the drowsiness they caused.  I am feeling on a much more even keel. I saw the doctor a couple of weeks ago and he put me on a low dose of beta blocker until I see the gastro guy again and see what he has to say.

I stayed up as late as I could for the Royal Wedding and then taped 8 hours of it.  It was wonderful and they looked so good together.  I've always loved Will and Harry and remember clearly when they were born.  Both so cute. Both grown into such nice men it seems. Kate is gorgeous!  The hats though....I had never heard of fascinators but that hat that Fergies daughter was wearing was quite the thing!

Then came our Federal Election. Lots of negative ads. Lots of crap flying around. It changed our political landscape though and for the good and far as I am concerned.  The bloc was decimated. The liberals took a really hard hit as well.  Both of those leaders resigned. The bloc was dedicated to separating Quebec from the rest of Canada so yay glad they are gone!!  The NDP were the big winners with all the seats they took and they will now be our official opposition. And finally from BC we elected the first Green Party leader in North America!  Elizabeth May is now an MP!  The Conservative Party will have a majority governmement for the next 4 years.  I was hoping for a minority government to help keep the conservatives in check but ..........we'll see how this goes.

Then bin Laden was killed.  Can't say I"m sorry to see that. If it brought any closure at all to the families of 9/11 then it was a good thing.  I really don't think this will stop terrorism but at least they know they will be tracked down eventually and have to deal with the consequences. 

My little pudgeball of a grandson is getting so big so fast!  He laughs and smiles now and has found his hands.  He works really hard on getting them in focus and then getting them into his mouth.  I think he really wants to suck his fingers lol.  When he gets them close enough he spits out his soother and gets the knuckles in there.  Sweet boy.  He is 97 days old today.



Friday afternoon

Well. I thought I had it all together and headed off for my doctor appointment. I was fine and got called in. I went because one of my diuretics was going to run out over the weekend and I needed to go. So I asked about going back to Vancouver to see the Dr. there and he said really right now there is no point.

My doctor there is all about the drug trials or when you get to the transplant stage. The last discussion was that I should have regular endoscopy's and try and maintain for 5 years till the next wave of drugs come along. I am pretty sure he isn't thinking about the protease inhibitors because I had already tried the Vertex drug in the trial. So he wants me to keep seeing the fellow that did the endoscopy as he is a gastro guy.

At that point I burst into tears. I have nothing at all against this gastro fellow and I have no idea why I burst into tears like that. I just can't seem to control it right now if anything at all goes not the way I expect it to I cry, but of course this was the correct place to do it. After a chit chat and him refilling all my prescriptions he took me to another spot and had me fill out the depression test sheet and of course I am depressed. Really at this point why wouldn't I be lol. Oh lord, anyway I am now on Citalpram and I started taking them today. The pharmacist said it will take a few weeks before they kick in and it will probably cause nausea (lol of course it will!!) but she swears this will go away in a couple of weeks. So hopefully I can get this all under control again. As for the rest of my pills I am to just keep on and hopefully I will maintain.

Friday

I'm off to the doctor for a pill refill and to ask to be sent back to the specialist to see where I am at. It took me most of a week to get back together again from the endoscopy. I always recover from the physical part of these things before the emotional and dealing with the findings. That takes me longer and I have a tendency to hibernate because I get so weepy and it's not something I can control and I hate that. I'm still a bit weepy but much more able to deal today.

On Tuesday I took Lacey out for a quick walk around the neighbourhood and we got attacked by a big german shepard size dog that was chained up to someone's front steps. It started lunging and barking as we were walking along the street on the opposite side of the road. As we got adjacent to it the dog broke the chain and came charging at us. Lacey is only 13 lbs and she pretty much freaked and was looking to get away. I turned my back on the dog and stepped between her and Lacey and scooped Lacey up in my arms and just kept turning away from the big dog. The owner was screaming and trying to get the dog and I just kept turning away and then walked away from them when she grabbed the dog momentarily. I got about 5 steps away and burst into tears and cried the rest of the way home. I can't deal with little things or big things. I was supposed to be going to a friends for dinner and I just couldn't. That was the end of my day and I went back into hibernation. Doc appointment time - be back later.

Endoscopy

I had my endoscopy on Thursday. I had one 14 months ago and I had slight varices so I wasn't sure how much that had changed. I got to the hospital and checked in with General Daycare. They sent me to a waiting room and about 5 minutes later a nurse arrived to collect me and another fellow. We followed her to our respective beds and I was given a gown and told to change and get on the stretcher. A nice lady brought me a warmed blanket and then they took the normal blood pressure etc. and asked a ton of questions regarding prior history. Warm blanket nurse came and started my IV. Then it was my turn. They wheeled me into the room - brand new state of the art - huge computer monitors everywhere and lots of long armed equiment. So they sat me up first and sprayed the gag reflex numbing stuff into my throat. I am such a bad gagger! The nurse is saying swallow that and I'm gagging and trying to spit it out! But we got through that and they make you lay on your left side and then she tried to put in the mouth guard which started the gagging again. They gave me a bit of the anesthetic and then no problems. Once the mouth guard was in I was gone and don't remember anything until they were waking me up back in my curtained cubicle. I think the first thing I asked was did he band any and she said yes four or five. When I was awake enough they started telling me I could get dressed and they would call my ride home. Then I threw up. Not pleasant. They gave me all my instructions on a piece of paper and I held my paper plate to be sick in again if need be and I was going to go to the waiting room downstairs and as I staggered by the nabbed me and made me sit in a chair and wait till Lynnie arrived. Once she got there I started to get up to go and staggered around some more so they sent her off to get a wheel chair to get me to the car. We got home and from the car to the apartment door and as we stuggled to get a key in I threw up again. Made it in and basically waved goodbye, said thank you very much and went and laid down. I was on fluids only for Thursday and soft foods for yesterday. It was very sore all day yesterday and I didn't manage to eat much. Spent most of the day watching tv and resting. Today it is 4:00am and I am wide awake. I'm trying to drink a cup of tea but am feeling queasy. I go back to see him in six weeks. This morning I am realizing how much damage has been done in the last year. From slight varices to having to band them seems quick to me. So along with the varices and the acites I would say we are getting closer to the end of my liver.

Friday

Long week it seems like. I haven´t been feeling all that well this week. I´m not sure why. As usual when I don´t feel well these days I immediately think it is something to do with my liver but really I have no idea. Just lots of nausea. Sort of sick and shaky feeling for most of the week.

But I had a busy 3 or 4 days which always does me in plus when i was at the hospital last week the fellow that saw me was sick with the flu. He kept apologizing. I asked him if he had his flu shot this year and he said no he never got around to it!! Working in a hospital with sick people and he didn´t get his shot............

The weather is warming up somewhat so I´ve taken Miss Lacey out walking a couple of times this week. I can´t wait for full blown spring to hit. My spanish is going ok. It gives me something to work at. It´s at my own speed so that works.

I´m hoping when this is all done that I can afford to finally get moved into my own place. That is what is keeping me moving forwards these days. As much as my son has been very good about sharing his place it was always meant to be temporary while i got my money situation sorted out. I just have to wait till this all gets settled and then I´ll know where I´m at. Most of my stuff is in tubs and stashed either at my mom´s or at a friends house. So many times I have gone to get something only to realize it´s in a tub at mom´s (an hour and a half away). I want my own dishes. I want space whre I can lay out my crafts and leave them for a few days if I feel like it. Just a place for me and the cat and dog. I was thinking about it the other day. In all my life I have only ever lived by myself for a total of about 6 months when I was about 18.

Ahh well. Soon.

Where is the sunshine??

Here we are at the middle of March and it still feels like winter most of the time around here. It is warmer today but the rain wants to fall still. I've spent the last few days watching the horror in Japan unfold and I should not in any way be complaining about our weather. I hope they get some warmth there too. So many people without homes and the weather is still so cold there too.

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.

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.