Well its a new year and I mean to finish as I started.... that is, in my case, being alive.!
But I think I may dispense with some of the issues I've had lately.
We had a very interesting trip to see Doc Shoozenbootzen and to fill up with intragam.
First off you will remember that I have been getting a top up in red cells for many many months and its been about every four weeks, then you will be very surprised that I needed blood one week after getting two units in Hervey Bay. One week ago in if fact on this very day. Yes I had gone up but nly to 95 from 89 two eeks earlier. I think I must have dropped to the 70's again inbetween the blood test and the reciving Hervey Bay blood. Any way the Dr laughed so hard when we we telling him the story about Hervey Bay and Bluey said " it would have taken less time to drive to Brisbane to get blood!". He/We are going to look at trying to get into the private hospital St Stephens that have an Oncology Day Clinic. The Base Hhospital at HB has an oncology day clinic as well but I'm going to give it a try after lasti time. It would have been the appropriate spot but they used a regular hospital bed/room/resources etc.
Anyway the blood took three and half hours to get to the clinic and then 3 hours to infuse the blood plus the time already spent. Arrived 10:00 am left 6:00pm but at least I left, eh? (Just a reminder to my Canadian friends that even though I have been here for 16 years I can still talk the talk.)
Lots of laughter yesterday we had the English bird who as usual was in top form. Motorcycle mama made many humurous inputs and the Scottish queen go my to kiss her hand. She really is out of control!!
But now to the news.
My white cells, neutraphills and platlettes are all way up. so the interferon was keeping the rest of the counts down and stopping it was a good idea. the Plattlets were up to 100 and three weeks ago it was 25 so that's brilliant. The Reds were still down and that's because of the fibrosis in my bone marrow that prevents the cells from developing properly.
We talked about how things in the treatment plan are draggin out a bit but he reasured us that I could go a long time just getting red packed cells and just crusiing along. He warned I may be building up iron. If fact he made a note to check it next time we are together. He's going away for three weeks now so will be back by the time I am scheduled. In the meantime I'm to do a blood test in 10 days and then talk to the Practise manager. Deb. about fixing up the Hervey Bay Transfusion stuff in case I need it.
I also have been having ulcer type pains for a month now and they have been getting worst so I'm going to get a scope out. and acid reducing tablets.
The big news is that he is concerned that in three months if the donor lymphocytes have not worked we may be facing a new transplant with a different donor. My Bro is just too good a match and there was no Graft vs Host Disease last time and thatw what is goin to attack the fibrosis to keep it under control. So an unrelated but matched donor will be better because there is likely a chance of more GVHD. There is also a higher risk of fatality from GVHD.
Heres where Bluey and I heard slightly different things. She heard the second transplant is very dangerous. I heard the second transplant has higher risks than the first one did. We could go on an on with me just getting blood every foour weeks or taking a chance on a cure by doing the second Transplant.....but this conversation will take place at the end of April. Not now. So every thing is just peachey.
It was really very good because of the just can go an go. This means we get to go to Melbourne for that concert Joyce wants and we can take small trlps inbetween the blood infusio
Saturday, December 29, 2012
Saturday, December 22, 2012
starting to understand the crisis in health care.
Okay this may be a long entry.
I'm documenting my time trying to get blood in Hervey Bay.
We thought that since it was Christmas we would try to get blood here rather than travel to
Brisbane. Doc Shoozenbootzen's practice manager sorted out a doc up here to admit me. He will for all time be the shock jock or doc jock. Anyway I have never seen him or talked to him. His assisatant talks to me and is very nice but never has given me their location or their phone number, I have to call into the Hospital switch to get to her. So first off they got me in to do the crossmatch blood test on Monday for blood on Friday...no has to be blood on Saturday. I said are you sure you can take the crossmatch blood more than 3 days before? they said yes. I asked the state pathology tech the same question she said yes. Its a rule at my regular clinic and at the regular pathology people that it can't be more than three days old.
So I get a call while on Fraser Island ...actually several calls but I couldn't call back because the phone number is blocked... anyway on spec I call the lady at the hospital who says yes I was calling to say you have to do another blood test for cross match Friday. Dooh!
I come Friday do the test and phone her back ( Remember I have to go through the hospital switch every time), and ask her some basics like what time? Don't know the "bed lady" was trying to get me. Where? The medical ward. Huh. I have to be put in a hospital bed! The bed lady never called so had to call back again and she was gone home so put on to the ward clerk I guess. I'm guessing about all this because no one would say names, give phone numbers etc. anyway was told to report to medical ward at 9:30am. because I have to get admitted by the staff doc and they start work at 8:00 am but won't be able to see me until then. as we arrived on time were hopeful. I'm puzzled why we have to waste this staff docs time when my consultant and Doc Jock have both signed off on my need. but am told the staff Doc has to order the blood ..but the blood has been ordered and in fact i know its at Pathology already!! The staff Doc has to order it be brought over from Pathology!!!
20 minutes till someone came in to say 'hi and someone will be in to see me' in a few moments. 10:00 rolls past and a nurse starts to canulate, dramas as usual but its in as doc drops by and we're off....
Nope it wasn't until11:00 til they brought blood in only to
discover the doc hadn't done consent form. five people are now in flurry to get forms etc because blood can only be out of fridge for 1/2 hour. Now I'm thinking its going to be out for two hours while infusing so whats the big deal but I don't say anything because we are finally seeing some speed. 11.45 I start the blood pump and its now 1.30. Four hours to get 3/4 of one bag into me. second bag queued up though. My nurse today is very nice and competent. asked her why it seems so hard and out of the ordinary....they never do day bloods here!!!! why am i here? dont know. day bloods are usually done at the oncology unit down the hall!!!!! WTF???
We have decided to re-explore this Hervey Bay transfusion again from scratch with better knowledge about what can go wrong but do it in the first week of Jan when I don't urgently need blood.
Anyay I have asked for my blood results twice and still have not seen them. three times while editing!
The food was edible.
What a waste of tax payer funds. to all my queenslander pals i'm sorry the system is so wastefull hope no one really sick needed this bed.
makes me really appreciate the staff at my regular clinic
more later
Chris
I'm documenting my time trying to get blood in Hervey Bay.
We thought that since it was Christmas we would try to get blood here rather than travel to
Brisbane. Doc Shoozenbootzen's practice manager sorted out a doc up here to admit me. He will for all time be the shock jock or doc jock. Anyway I have never seen him or talked to him. His assisatant talks to me and is very nice but never has given me their location or their phone number, I have to call into the Hospital switch to get to her. So first off they got me in to do the crossmatch blood test on Monday for blood on Friday...no has to be blood on Saturday. I said are you sure you can take the crossmatch blood more than 3 days before? they said yes. I asked the state pathology tech the same question she said yes. Its a rule at my regular clinic and at the regular pathology people that it can't be more than three days old.
So I get a call while on Fraser Island ...actually several calls but I couldn't call back because the phone number is blocked... anyway on spec I call the lady at the hospital who says yes I was calling to say you have to do another blood test for cross match Friday. Dooh!
I come Friday do the test and phone her back ( Remember I have to go through the hospital switch every time), and ask her some basics like what time? Don't know the "bed lady" was trying to get me. Where? The medical ward. Huh. I have to be put in a hospital bed! The bed lady never called so had to call back again and she was gone home so put on to the ward clerk I guess. I'm guessing about all this because no one would say names, give phone numbers etc. anyway was told to report to medical ward at 9:30am. because I have to get admitted by the staff doc and they start work at 8:00 am but won't be able to see me until then. as we arrived on time were hopeful. I'm puzzled why we have to waste this staff docs time when my consultant and Doc Jock have both signed off on my need. but am told the staff Doc has to order the blood ..but the blood has been ordered and in fact i know its at Pathology already!! The staff Doc has to order it be brought over from Pathology!!!
20 minutes till someone came in to say 'hi and someone will be in to see me' in a few moments. 10:00 rolls past and a nurse starts to canulate, dramas as usual but its in as doc drops by and we're off....
Nope it wasn't until11:00 til they brought blood in only to
discover the doc hadn't done consent form. five people are now in flurry to get forms etc because blood can only be out of fridge for 1/2 hour. Now I'm thinking its going to be out for two hours while infusing so whats the big deal but I don't say anything because we are finally seeing some speed. 11.45 I start the blood pump and its now 1.30. Four hours to get 3/4 of one bag into me. second bag queued up though. My nurse today is very nice and competent. asked her why it seems so hard and out of the ordinary....they never do day bloods here!!!! why am i here? dont know. day bloods are usually done at the oncology unit down the hall!!!!! WTF???
We have decided to re-explore this Hervey Bay transfusion again from scratch with better knowledge about what can go wrong but do it in the first week of Jan when I don't urgently need blood.
Anyay I have asked for my blood results twice and still have not seen them. three times while editing!
The food was edible.
What a waste of tax payer funds. to all my queenslander pals i'm sorry the system is so wastefull hope no one really sick needed this bed.
makes me really appreciate the staff at my regular clinic
more later
Chris
Saturday, December 8, 2012
That's better!
Platelettes are up! So we stopped interferon last week and already the cell counts are up. Reds are at 101 that's down but nowhere near as much as expected. Still waiting to hear when the infusion of donor lymphocytes is going to happen.
More later
Chris
Friday, December 7, 2012
Some news...ish
I've been a bit slack about a lot of things digital and its time to catch up. I will talk to the doc later today about the blood test last wednesday but I'm hopeful but more about that later. Lets take you back a week to our last trip to Brisbane. Bluey N I took the Bruce again and got in with only an hour of chair wait. One may wonder how they can get backed up at 10:00 am a whole hour. But you don't say anything cause you are a patient patient.
Got in and its just intragam. so no premeds just shove a needle in the vein and bang it in. So we were done in an hour and a half and then on to see the doc. Oh we had some serious gut busting laughter in the back this time. I swear they hire comedians and then train them as nurses!
Doc Shoozenbootzen stopped the interferon officially declaring that route as a dead end. The silver lining is that a side effect of the interferon is suppression of some blood counts. So... I should get bump up as a result of stopping it! Yay!
I do feel a little less out of breath but that could be just in my head. Then again lots of fun is in my head so lets party!
more later
Chris
Got in and its just intragam. so no premeds just shove a needle in the vein and bang it in. So we were done in an hour and a half and then on to see the doc. Oh we had some serious gut busting laughter in the back this time. I swear they hire comedians and then train them as nurses!
Doc Shoozenbootzen stopped the interferon officially declaring that route as a dead end. The silver lining is that a side effect of the interferon is suppression of some blood counts. So... I should get bump up as a result of stopping it! Yay!
I do feel a little less out of breath but that could be just in my head. Then again lots of fun is in my head so lets party!
more later
Chris
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