New kit
We saw Prof Trainer (henceforth known as Prof T) yesterday. He was very helpful and went through the questions we'd gathered from reading the Addisons handbook.
Overall, it all sounds rather straightforward. We now have an emergency injection pack, for use if Quentin can't keep the tablets down, as well as a blue steroid treatment card. Both need to be carried at all times and in hand luggage on flights. We also have a letter from the Prof explaining the situation, as apparently ambulance crew and A&E staff are sometimes reluctant to give the necessary injections without a Doctor's say so. We have to be aware that Addisons is a rare conditions and Quent joins an exclusive club. His blue card and letter will hopefully wave him through, although I don't think it gives discounts off restaurants or loyalty points as so many membership cards do these days. Hopefully all of our new kit will never be needed.
Over the next little while we need to find the optimum standard dose for Quent. Not too much (long term side effects such as weight gain, osteoporosis), not too little (acute side effects such as tiredness, low blood pressure, mood swings). Quent will start reducing the doses gradually over the next few weeks and we'll have to monitor how he does. From 60 mg a day two weeks ago and 40mg a day yesterday, he's now on 35mg. If all is well, he will reduce further to 30mg and then 25mg. Then we'll hold it for a while. Long term he'll probably be on 20mg or 25mg a day.. with extra if he's ill or in an accident.
The mantra is that no-one ever died of having too much hydrocortisone, but too little can be life-threatening.
The next hospital visit will be for a CT scan (checking that there's no other cancer appearing) and a bone density scan, so we have a baseline (when checking for osteoporosis in future). In the meantime, good diet and exercise seems to be the order of the day. We've started doing an hour's exercise in the morning. So far we've been walking, but we're going to get the bikes out over the weekend so we can go a bit further afield.
Overall, it all sounds rather straightforward. We now have an emergency injection pack, for use if Quentin can't keep the tablets down, as well as a blue steroid treatment card. Both need to be carried at all times and in hand luggage on flights. We also have a letter from the Prof explaining the situation, as apparently ambulance crew and A&E staff are sometimes reluctant to give the necessary injections without a Doctor's say so. We have to be aware that Addisons is a rare conditions and Quent joins an exclusive club. His blue card and letter will hopefully wave him through, although I don't think it gives discounts off restaurants or loyalty points as so many membership cards do these days. Hopefully all of our new kit will never be needed.
Over the next little while we need to find the optimum standard dose for Quent. Not too much (long term side effects such as weight gain, osteoporosis), not too little (acute side effects such as tiredness, low blood pressure, mood swings). Quent will start reducing the doses gradually over the next few weeks and we'll have to monitor how he does. From 60 mg a day two weeks ago and 40mg a day yesterday, he's now on 35mg. If all is well, he will reduce further to 30mg and then 25mg. Then we'll hold it for a while. Long term he'll probably be on 20mg or 25mg a day.. with extra if he's ill or in an accident.
The mantra is that no-one ever died of having too much hydrocortisone, but too little can be life-threatening.
The next hospital visit will be for a CT scan (checking that there's no other cancer appearing) and a bone density scan, so we have a baseline (when checking for osteoporosis in future). In the meantime, good diet and exercise seems to be the order of the day. We've started doing an hour's exercise in the morning. So far we've been walking, but we're going to get the bikes out over the weekend so we can go a bit further afield.
posted by Helen at 6/11/2014 12:46:00 pm
2 Comments:
After the previous post, surprised you'll have time/energy for bike ride...
Hope Quent gets dosage sorted OK and may he never need the 'kit'. Might sneak that walk in after all!
Jx
No one likes to deal with insurance companies, especially at a time when finding the best treatment for yourself or a loved one is your top priority.dual diagnosis rehab
Post a Comment
<< Home