Merissa update and my big mistake...!
Thanks Sharon,
Yes, is good to know your treatment is working well, you certainly don't want to start all over again, huh...?
I wish that this update was a more positive one, things are not going as we expected and I messed-up big..!:frown:
I have been very pissed-off with her specialist for causing the situation she has been on there is, not start the new treatment weeks ago, he messed up and he knows it in the mean time, Merissa has been in agony and I have been totally stressed with all these delays, seeing her get worse every day.
Last week, I contacted his office as I wanted to contact the department in New Zealand that processes these species authorizations, we have always been told the waiting time after the documentation is posted, is between 1 and 2 weeks last week we were about 10 days since the info was posted and I wanted to find out if the department has already processed the forms and if posted back or not.
A few hours later I get a call from the specialist to let me know that the Department does not offer a public phone number so, I couldn't contact them but he the specialist knew what I was after and he said that he has been in contact with the Department and that the forms have been approved and posted back.
This was last Thursday so I said to Merissa that, would be a good idea to get the blood test required before the new treatment/infusion can be given, in my head I though that, if the paperwork was on its way last Thursday, we or the Hospital where these infusions are administrated would receive the approval, that would mean that we could get it from the chemist and make an appointment ASAP to have the new treatment started.
We knew that the blood test results would have been provided to the specialist and the Hospital that will give the injections by Monday so, if everything went right, Merissa would be getting her infusion on the Wednesday or the day after but that was not the case.
We waited Monday, Tuesday, and Wednesday, no mail and or a call from the hospital to let us know the treatment could start soon, Wednesday lunch time, I contacted that hospital to find out it they have received the approval or not, after passing the call between a hand full of different departments, I finally got someone that could tell me something about the issue, I was told that they have just received the treatment authorization that morning (bull$#!t) and that they were going to contact us so, when I asked when could Merissa start the treatment, she tell's me that she can't get in before the 24 March they were full, this was the 8 March.
Well, I got really upset and regardless of what I would say, it was no way I could get Merissa in before the 24/3.
I got on the phone immediately with her specialist and I "expressed" my disgust about the situation, somehow, he already knew of the treatment date I was given just 30 minutes prior and he said that he couldn't do anything about it, I reminded him of how Merissa was suffering and getting worse every day when she should have had the treatment started weeks prior, he knew I was "boiling" so he said that, Merissa should shouldn't be getting that worse and in so much pain, he asks, has she been taking the tablets I gave her last time you guys were here...?
Now I was baffled, tablets she should be taken prescribed that day..?
the only thing I remember was a couple of pages he wrote for us to follow as soon as the treatment would start, in fact, there was a 14 day instruction steps, for the day she would get the first infusion, Merissa also got a prescription for 2 lots of tablets, the same drug but is 2 different dosages, 5mg and 25mg, the name of it was mentioned on the instruction page for day 1 of the 14, she was to take 7.5mg that morning of the infusion, and then the dosage would change during the 14 days course, this would coincide with the day of the second infusion, they are to be administrated fortnightly.
He then tells me that yes, he gave us the instructions for the 14 days from the start of the treatment BUT that, he said that Merissa should start taking 7.5mg daily until the infusion day, that we both missed and I particularly have been very upset because Merissa trusts me to take instructions from doctors as she get's confused very easily, I keep telling her that is not right, that she is not taking anything for the inflammation in her body while she is waiting for the infusion so, when I found out that Merissa has been 12 days without these tablets that would have stabilised her enough while waiting for the infusion and I can not forgive myself for making such a painful mistake...!
She has had 2 tablets (one daily in the morning with food), she took the one on last Wednesday after lunch but that doesn't matter, what matters is that she is now getting a little help from these tablets, I will be ringing the specialist today (Friday afternoon) as per his request, for the possibility to increase the dosage slightly, Merissa says that she can feel an improvement already only after 48 hours so, we will see what the specialist says.
He now knows that, he messed up once and that I have been frustrated with it but now, he also knows that I messed up and I don't really know which one is worse, I feel bad enough for not taking enough attention, I suppose, he didn't thing necessary to add that to the instructions pages, I have been quite OK with following his instructions in the past so, I can't blame him, I can only blame myself.
Poor Merissa, she tries to comfort me and keep saying for me not feel so bad about it, she can remember him saying that either, that it was an honest mistake, yes it was but, that doesn't change the fact that she suffered a lot more than she should if she had taken the tablets. This is a good example of the sort of person she is...!
I sincerely hope these tables she is on now, do what the specialist said they should do, it will make the wait for the infusion a lot less painful for both of us, for sure...!
Better days will come..!
Cheers
George