03 July 2011

A Bit of a Setback

Yesterday was what I'm going to call "weigh day" on the ward where all the patients have to sit in this funny chair and get weighed. A few days ago I was starting to suspect that while the Modulen seems to be settling better in my stomach, and some of my other symptoms seem to be improving, that it wasn't quite doing it's job in terms of helping me gain weight. I guess things like my engagement ring sliding off my finger and generally feeling bonier are what led me to believe this, and I was a bit sad to have it confirmed yesterday. Turns out that I've lost a little over 3kg in the last week alone, going from 41.25kg down to 38.5kg.

Obviously, I'm a bit disappointed to learn this, as it's certainly a setback in my recovery. However, I'm going to keep my chin-up and look forward to having a chat with the doctors and dietitian tomorrow to see when they will start the TPN. It seems pretty obvious to me that is the only viable solution to get me to gain some weight while my gut heals. And I'm sure I will get to continue with my delicious Modulen in the meantime as a supplement. I mean, it's not really causing me to gain weight at the moment, so I see no reason why they should be worried about it causing me to gain too much (like that even seems possible given my current, skeletal state).

In other news, I'm turning my partner into a drug mule. When I had a chat with the consultant on Friday, we agreed to reduce the amount of steroid I am taking from 50 to 40mg per day. Turns out the ward doctor forgot to actually prescribe the new dosage! So yesterday, after enquiring with the nurse (who obviously has not authority to just give me the medicine), she tried to get a hold of the on-call/weekend doctor. Unfortunately, she was not able to get it sorted out, and after writhing in pain for the better part of the day as a result, I asked my boyfriend to bring some of the medicine in from home. It was a little too late, and I still felt pretty crap most of the day, but I am feeling much, much better today. I just cannot believe that happened though.

For those who've never been on courses of steroids, it's very dangerous to go from a high-dose to nil. In fact, I have a nifty, blue "Steroid Treatment Card" I carry in my purse that states:
"I am a patient on STEROID treatment which most not be stopped suddenly
  • If you have been taking this medicine for more than three weeks, the dose should be reduced gradually when you stop taking steroids unless your doctor says otherwise.
  • Read the patient information leaflet given with the medicine.
  • Always carry this card with you and show it to anyone who treats you (for example a doctor, nurse, pharmacist or dentist). For one year after you stop the treatment, you must mention that you have taken steroids
  • If you become ill, or if you come into contact with anyone who has an infections disease consult your doctor promptly. If you have never had chickenpox, you should avoid close contact with people who have chickenpox or shingles. If you do come into contact with chickenpox, see your doctor urgently.
  • Make sure that the information on the card is kept up to date."
Suffice to say, I am going to have a few words with the doctor tomorrow.

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