Hospital.

 We set off an hour and a half earlier than we needed to . We had waited since December for this appointment and I had to phone last week to jog their memory. Lee had been overlooked and we were waiting in vain.
In January A scan appointment arrived and we both went to that one.....then we heard nothing until I phoned up.  The scan had revealed active Rhumatoid arthritis. Also Lee has been getting awful headaches. The nurse who called back with this appointment said that it was unlikely to be the medication after all this time. Suggested an eye test. Lee has never had one! So I just booked him one in Otley for Friday. We are going junking anyway so this is a good reason to be early. I booked myself an appointment too whilst I was at it. That just leaves us with finding an NHS dentist next. Lee's teeth need a bit of a set to as well.

Any way we got to Chapel Allerton hospital with out much traffic hindrance  and parked up near the hospital entrance, paid our money for parking  then gave Monza dog a bowl of water in the back of the Fonz car. We had set off at 8am and Monza insisted he was coming too. his walk came after lunch today as it worked out, but there was still no way were getting out of the house without him.

 We walked miles down the now familiar corridors to the Rhumatoid Arthritis clinic and checked in with the receptionist and waited. The first thing as usual was to Weigh Lee and take blood pressure in a side room. Weight down! he is a stick with the wood shaved off in any case. Blood pressure? yes he has some and it is okay.
Then we just sat and waited. Mobile phones do not work that well so we looked through tatty magazines at pictures of wedding dresses and holiday locations. There were some great photos of Whitby in one issue  which I forgot to steal.  Until Lee's consultant called him to go through to the appointment rooms.

 The reception is stacked out with files. Lees was a temporary file as his actual notes and files are huge and require a trolley just for his notes alone..... Lee has been coming to this hospital now for just over eight years. It does not seam that long but it is.

 Lee is not much good at waiting. fortunately he did not have long...as the clinic was reasonably on time. There were loads of others waiting. a lot come in on sticks and wheel chairs.

 Once in the consulting room  Lee was asked how he was and what had been going on since October when he was last seen.
I sit quiet. I am just there to make sure Lee does not "forget" in true male fashion to impart the information required to help him. He has a habit of missing vital points.......
In October a concern was his general well being. Lee had been really miserable about his rusty van being towed away and the bullying from a neighbour. The bully hurled abuse at Lee over a parking space that he is not entitled to and consequently insists on blocking the access to our house with his van . Even offering to "put Lee on his back" if he speaks to him again. We can not bring our car around now ever. The same person yelled at Lee telling him and anyone else that would listen how Lee spends all his time "drinking and smoking" in his workshop whilst I work. That was also all the way back in August. Since then he glares at lee and sits silently watching Lee's every move from his kitchen. Spooky as hell it all is and he even moved his chair so that he can see what Lee is up to. very very threatening.
The consultants were very concerned and offered counselling and wrote a covering letter for him explaining his disease for anyone not understanding.
Since October we have come up with a different plan and we briefly told them about how we "broke out my pension" and the Vauxhall Frontera that Lee is going to fix and make Utube videos about. Perhaps it is a little odd but it makes Lee happy.
We have just accepted that I will work and with that money pay the bills and being alive costs.                So that was the plan we told them about and then we got on to the hardcore medical stuff. 

There was also a nurse "sitting in"  on this appointment. This will be his nurse now and it will be this lady who we see about his new medication next week.

 The consultant examined Lee's joints. hands feet.......and the decision was to change his Medication as it clearly was not doing all of the job..... and including him in another study of Rhumatiod arthritis as it progressed and trying to work out why treatment fails in some patients. This is the third set of medication to fail now. At one stage there were fabulous results from A drug called Etanacept. After about three years that began to fail too. That is the Nature of the bloody awful Rhumatoid Arthritis. It changes and finds other ways to attack.

 A scan, blood tests and x-rays are all booked for next week and we will be back to see the nurse for his new medication to start......

 The study (RADA) he is taking part in (again) is to monitor the development of the arthritis .They have recruited him just as he is starting new medication so that changes can be recorded accurately. He will have a scan before the New Meds are started. There is a week from stopping the old and starting the new....there will be no meds in that week, this is so that they can get a clear scan of exactly what is going on ....

There were many forms and consents to be read and signed. Permission has to be sort for everything.

Then we went for the blood tests......the first of a few to come. Parts of his medication can destroy his liver and this has to be monitored closely. At one stage it was a blood test every month.

We were at the hospital over two hours in the end. Lee is really pleased with the result of the day.
new medication.....new hope! On a study.....which means he gets seen by the doctors every three months without fail!

This time Lee will be prescribed Abatacept. This is a type of drug called biological therapy. It works by stopping the function of a particular cell in the immune system called a T-cell. This prevents the inflammation and immune activity which cause the symptoms of rhumatoid arthritis.

Lee is now asleep and Monza dog, who has had a very boring day waiting for us..is snoring on Lee's feet. I am just reading the leaflet about this new Medication.
I must say it looks quite hopeful. It can only be prescribed if the Arthritis is active and other disease modifying drugs have been tried previously.(and failed)

So that was the hospital appointment done. We then went to hunt down lunch at a supermarket and call into the new big junk shop in Kirkstall.

We ate our sandwiches and Blueberry muffins today. This supermarket does not sell chocolate eclairs. on the way to Monza's very late walk.

It is now 5am on Wednesday and we are both up. Lee is very much looking forward to this new treatment. Currently he does not sleep very well and has swollen painful feet and hands. He does not look very well either. So we can "hope" now.

Today I now have for myself as "work" called to cancel the hours for to day. So yipee!!! we can start on fixing the Fenix car and take loads of junk to the tip now that the snow has gone.
I also have my eye on going to Ikea to get some new display shelves for the doll room. The light is now coming up at a reasonable hour so we will be up and at 'em very soon.
AND of course the fifteen dolls I bought on Ebay could very well arrive.