I came out of hospital yesterday for the second time. My GP called me last Thursday after my visit she went to speak with another doctor at the practice as she was concerned about the swelling in my both my legs. She asked me to go to A&E to check if I had another DVT even though I am taking warfarin which the clinic increased the dose my INR reading didn't change from 1.3.
You may be wondering what this has to do with the infusions. Well, I am going through a really bad flare up right now caused because the nurse at the hospital has had an accident and the Rhumey Clinic have been unable to find a replacement since the 1st week of June. Senior management have stepped in to try and solve the problem, up to yesterday, they still haven't found anyone. I was told that they are doing everything they can and that they have several patients who are having flare ups and waiting to start infusions. I am going to Canada next Wednesday without being able to have 2 infusions I was due.
After reducing the steroids to 7.5mg from 20mg I have now had to increase the dose back up to 20mg. It is the steroids that have now caused me to become diabetic. I had such a hassle trying to get the blood sugar monitoring kit before I left the hospital. I was told by several various hospital staff including the pharmacy that they will include the kit in a container with the rest of the medications before I leave.
This of course didn't happen. I was first discharged without my pain medications as they were (controlled medications) and were not put with the rest, I had another really BAD flare up and ended up back in hospital the next day in server pain, my sister was unable to get me out of my chair to her car to take me back to the hospital and we had to call an ambulance. I was in hospital another 3 day to get my pain under control as best they could. They have changed a lot of my meds, and due to the steroids being increased, I am now on diabetic medications.
All this because I am unable to have the tocilizumab infusions!!!!!!
Do they honestly understand that taking over 2 months + on going trying to get a replacement nurse!!!!!
I went to see my GP this morning and feel better about things apart from being unable to get the infusion.
If anyone knows about the diabetic testing kits, could you please let me know.
I hope everyone is keeping well, I will be back when I get back from seeing my family in Canada.