My "helper" is down...! - Page 16 - International Association of Penturners
     International Association of Penturners
Pens for Service Members
 
Support The IAP

Go Back   International Association of Penturners > Community Forums > Casual Conversation
  Forgot Password
Register FAQ Members List Search Today's Posts Mark Forums Read
Casual Conversation Off-topic, general chat.


Logged on members can hide ads!

Welcome to penturners.org!

You've found the home of The International Association of Penturners. You are currently viewing our site as a guest, which gives you limited access to view discussions, photos, and library articles.

Consider joining our community today. You'll have full access to all of our content, be able to enter our contests, find local chapters near you, and post your questions and share your experience with our members all over the world.

Membership is completely free!!

If you have any problems with the registration process or your account login, please contact us.

Reply
 
LinkBack Thread Tools Display Modes
Old 03-09-2017, 08:59 PM   #151 (permalink)
 
Join Date: Jan 2017
Location: Kansasville WI 53139
Posts: 163
Photos: 0

Default

Wow, a sad and unfortunate situation. Like Edgar said, you cant beat yourself up for that. Why didn't the doctor give you a written (well, not hand written if your doctors write like they do here in the states)or typed up set of care instructions? It is impossible to remember all that's said in situations like this when you've got so much on your mind, and to make that more complex, the doctors use terms and big fancy words that most times we really have no idea what they really are. Also, if it wasn't for your understandable frustration and disgust with the way things were being handled, and you contacting them , you STILL wouldn't have known.
Don't let that get you down, a person can only do so much, and she needs you to be strong now more than ever. And...when Merissa is back to feeling pretty good ( and it will come soon) you've got to be strong just in case she chases you around with a cast iron pan for payback!!!
Hang in there George, we will keep you both in our thoughts and prayers!
Likes: (1)
luckyscroller788 is offline   Reply With Quote Top
Old 03-10-2017, 06:53 AM   #152 (permalink)
 
Join Date: Mar 2015
Location: Perth, Western Australia
Posts: 1
Photos: 0

Default

George, Having been through something similar the only advice I can give is no matter how hard it is, keep a positive attitude and ride over the crap. If you don't your in trouble. The 2 greatest things we have in our life is LOVE and HOPE and we see your love for Merissa and our hopes and prayers go out to you both. Ian & Jill.
Likes: (1)
west aussi is offline   Reply With Quote Top
Old 03-11-2017, 11:27 PM   #153 (permalink)
 
robutacion's Avatar
 
Join Date: Aug 2009
Location: Australia - SA Adelaide Hills
Posts: 5,077
Photos: 4

Default

Thanks guys, I always appreciate kind words...!

I think I may start to take my voice recorder and use it (with the specialist knowledge and permission) and hear it all again at home and when more relaxed, they may help to pick up on things missed during the consultation...!

The tablets that Merissa is now on, the ones she was suppose to have start taking after the specialist appointment but that I stuffed-ud is the Panafcortelone, she is on 7.5mg daily but soon after the first infusion (that we so much have been waiting for...!) she will go to 60mg for a few days, then back to 30mg a few days later back to 7.5mg, this will all have to happen in 14 days cycles, as per the infusions.

Has been now a few days since I realised my mistake and got Merissa on those tablets, according to her, the pain sharpness ha been reduced and the swelling in her hands and feet are a little reduced, these tablets alone are not capable of stabilise the RA, they are a supportive drug for the new infusion treatment she will start on the 24 March.

Any improvement even if slightest, is always welcome...!

We appreciate any and all positive thoughts..!

Thank you,

Cheers
George
__________________
"Don't give others what you don't like for yourself"

Email: nyodine@yahoo.com.au

Web-Store: https://www.georges-bits-of-timber.com/
robutacion is offline   Reply With Quote Top
Advertisement
Old 03-17-2017, 09:30 AM   #154 (permalink)
 
sbwertz's Avatar
 
Join Date: May 2010
Location: Phoenix, AZ
Posts: 2,199
Photos: 20

Default

Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
__________________
Sharon in Phoenix

sbwertz is online now   Reply With Quote Top
Old 03-19-2017, 09:16 AM   #155 (permalink)
 
robutacion's Avatar
 
Join Date: Aug 2009
Location: Australia - SA Adelaide Hills
Posts: 5,077
Photos: 4

Default

Quote:
Originally Posted by sbwertz View Post
Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
Hi Sharon,

According to the info sheet the specialist gave her, the name is Rituximab the Brand name is "Mabthera".

I'm most surprised and pleasantly amazed as to the improvements Merissa has shown since she started on these new tablets Panafcortelone, even though at a fairly small dose compared to what she will be on for the first week after the infusion (60mg) and then 30mg for the following week and then the next infusion is administrated and from what I believe, the intake of the new tablets will be repeated every 2 weeks for at least 3 months, the minimum time required for the test.

We also speak of you often, if not for the association you have with the visually impaired people, your pen turning and off-course your battle and experience with the RA.

While I'm talking about pen blanks, any news of the big box I sent..?

Cheers
George
__________________
"Don't give others what you don't like for yourself"

Email: nyodine@yahoo.com.au

Web-Store: https://www.georges-bits-of-timber.com/
robutacion is offline   Reply With Quote Top
Old 03-19-2017, 02:52 PM   #156 (permalink)
 
Join Date: Jul 2012
Location: Grand Junction, Colorado
Posts: 1,715
Photos: 1

Default

George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
__________________
Steve

"He (Jesus) must increase, I must decrease." John 3:30
SteveJ is offline   Reply With Quote Top
Old 03-21-2017, 12:26 AM   #157 (permalink)
 
robutacion's Avatar
 
Join Date: Aug 2009
Location: Australia - SA Adelaide Hills
Posts: 5,077
Photos: 4

Default

Quote:
Originally Posted by SteveJ View Post
George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
G'day Steve,

Thank you for your words, I will let Merissa know of your thoughts...!

Merissa doesn't do well at all with the methotrexate, she has been on it in the beginning but she had to stop. For whatever the reason, the Department that gives the authority for these treatments seem to be pushing methotrexate on each treatment there is, they will only allow a new drug to be tested if it is done in conjunction with a certain amount of methotrexate.

The specialist knowing how Merissa reacts to it, have organised a special tablet that will need to be taken 4 hours after each weekly methotrexate injection, that tablet does cancel the methotrexate before it starts to do harm, this seems to be working and Merissa doesn't seem to suffer from any of the side effects she knows well from the methotrexate intake.

I was not sure of the treatment costs but I have ben told that it was very expensive and reason why, the patient will have to go through many other less expensive treatments before this one is authorised. As far as I know, this new treatment will be administrated twice a month for at least 3 months so, you are correct, the 6 treatments are all that is schedule at this point.

Cheers
George
__________________
"Don't give others what you don't like for yourself"

Email: nyodine@yahoo.com.au

Web-Store: https://www.georges-bits-of-timber.com/
robutacion is offline   Reply With Quote Top
Old 03-28-2017, 01:57 AM   #158 (permalink)
 
robutacion's Avatar
 
Join Date: Aug 2009
Location: Australia - SA Adelaide Hills
Posts: 5,077
Photos: 4

Default

Hi everybody,

I have some update for you guys, I will try to be short and avoid extra details as last Friday 24 March (Merissa's new infusion treatment), endup being a very stressful day for us, including our 2 pet dogs which the smallest Teddy was also very sick.

Anyway, we were at the designated Hospital (65km away) at 10:00am as requested, only to be told that, this treatment was not like the previous infusion that lasted 2 hours, this one would last at least 6 hours.

We had other appointments for that day, based on the 2 hours previous treatment time so, everything went highwire from there.

Being so far away from home with no place to wait with the dogs, in the 34 heat, I decided to drive home and wait there.

About 1:00pm I got a call from Merissa to let me know that, they had to stop the infusion because she came with a nasty reaction from the infusion (so we thought). She was panicking, a doctor was called to asset her and lots and lots of blood was taken for all sorts of test, trying to identify what caused the reaction. On that call, Merissa also said that the doctor had told her that it was a good chance she would have to be admitted overnight so that they could monitor her closely.

A few minutes later I got a call from this female doctor, she wasn't aware that Merissa had called me with the news so basically, she said pretty much the same thing Merissa said apart from the fact that, she was waiting for one of the blood tests results to determine if Merissa had to say overnight or not however, if she was to come home, there was a risk she would get sick, if some of the described symptoms would develop, I would have to drive her to the emergency immediately, both Merissa and I did stress the fact that home was a better place to be.

I was told to ring back at 4:00pm to find out if she would stay there or I could get her home and for a few hours I was stressed out but I made that call only to be told that, the preliminary blood test was OK so, the risk to big problems has been adverted.

Another 65km later at about 5:00pm I was helping Merissa to the vehicle, she was weak from having all that blood taken and a bit shaken up from the events and the fact that, she had half of the new drug in her system and a bit sick in the stomach.

We got home safely and everyone settled down for the evening, I kept a close look any strange signs of troubles from her but thankfully, nothing bad did eventuate.

We are now waiting for her specialist to contact us with some instructions on how to proceed next and when can Merissa return for another attempt...!

Oh boy, quite a day that was, fortunately, it endup well, Merissa was home and I still managed to get Teddy at the Vet that day at the appointment time and since Teddy has made an amazing recovery, I'm a lucky man...!

Cheers
George
__________________
"Don't give others what you don't like for yourself"

Email: nyodine@yahoo.com.au

Web-Store: https://www.georges-bits-of-timber.com/
robutacion is offline   Reply With Quote Top
Old 03-28-2017, 08:05 AM   #159 (permalink)
 
Jim15's Avatar
 
Join Date: Dec 2005
Location: Hamilton, Ohio, USA.
Posts: 15,716
Photos: 58

Default

I'm glad she is ok and didn't have to stay in the hospital. She will remain in my prayers.
__________________
jim,
Hamilton, Ohio
Jim15 is offline   Reply With Quote Top
Old 03-28-2017, 08:02 PM   #160 (permalink)
 
OZturner's Avatar
 
Join Date: Aug 2013
Location: Sydney. NSW. Australia
Posts: 4,637
Photos: 27

Default

So pleased that Merissa is progressing after her Incident, and hope that she can successfully complete her treatment, if possible. Also great new about Teddy.
Keeping you and Merissa, in my thoughts.
Regards,
Brian.
__________________
Turn that special piece of Timber you have been keeping.
Enjoy it for its true beauty.
Why leave it for others to enjoy without you?



OZturner is offline   Reply With Quote Top
Related Content
Logged on members can hide ads
Reply

Bookmarks

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is On
Trackbacks are On
Pingbacks are On
Refbacks are On


All times are GMT -5. The time now is 01:42 PM.

Powered by vBulletin® Version 3.7.6
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Search Engine Friendly URLs by vBSEO 3.6.0

Content Copyright © 2003-2016 by Penturners.org, LLC; All Rights Reserved
Terms Of Service   Acceptable Use Policy