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Changing Altitudes.

Easy going?

When starting on a climb, the weather is mild, oxygen levels are normal and apart from the large backpack, life is good. As the climb progresses conditions change.

Why monitor?

The careful monitoring of progress is as fundamental to survival as keeping close tabs on the environment is to the mountaineers, when the atmosphere gets rarer and the climate gets colder. This applies even if you are in remission.

What is needed?

You will be asked for regular blood tests and other tests, depending on your needs. Make sure you attend, even though the list of appointments can seem endless. Maybe some of the tests seem pointless to you but unless you are having too many X-Rays (Radiation) or other tests causing cumulative damage, more data is normally better.

The availability of regular data will help your doctor to decide what medication changes to make or anything else that might be needed to give you the best chance of achieving and staying in remission.

Collect the data.

Data management.

You could well find yourself having tests at your local practice in addition to specialised clinics and hospitals.
So :-

  • ☑ Find any records that you have already and go and beg for those that you dont have. It could save a lot of trouble later on. [1]
  • ☑ At each final consultation ask for a copy of any notes, discharge papers and so on. This isn't always an easy ask, but it will be worth it in the long run.
  • ☑ Look after your records, scan them into your computer and back them up. Otherwise good paper records will do just as well.[2]

You could be 6 months down the road before someone asks what the results of a certain test were. It would be bad if you cant remember if, when or where!

Create a timeline.

What was your story?

Your troubles will have started a long time ago. Perhaps you had sinus problems, then adult onset asthma followed by numbness in random parts of your body. Each person has a slightly different story but whatever you can remember could be useful in the future, particularly if you move towns or have to change consultants.

How could it help?

Go back as far as you can.

Put each piece of information in a spreadsheet or on a single piece of graph paper, so that the progression of EGPA can be easily seen by a new pair of eyes.

It could help in avoiding medications that you are allergic to or ones that were ineffective previously.

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