I was sat in the haematology waiting room when the consultant I know very well came over. She told me she had asked a new consultant to the department to see me. She was hoping that this consultants fresh eyes might pick up on something that is being missed. I was happy with this and appreciate that they are still trying hard to fix me.
The new consultant was lovely. She asked me how I was feeling. Then she said had I noticed my face and neck were swollen. I said yes but I’d put it down to steroids. She said that Victoria, my long standing consultant, felt that I didn’t look right and the puffiness was not normal. The new doc gave me a really good going over and said she felt I had a clot and needed an urgent CT scan. I explained I had a dermatology appointment but the doc insisted this was more important and dermatology would need to be rescheduled.
I had the scan and a clot was provisionally confirmed . They still needed the radiographer to report on it but they wanted to start treatment straight away. I now have to inject myself every day with a large dose of blood thinning medication. I was asked to come back on Thursday to discuss treatment plans. I had arrived at Kings at 12 setting off from home an hour earlier. I got home after 8pm. What a day!
Today I set off for the hospital at 2pm. I had to go to Guys first for a dental appointment. They are very good at looking after my mouth GvHD. Unfortunately due to the weather, traffic conditions and the fact that everything takes so much longer when you are medically complicated, I had little time to get to haematology and rheumatology where I had follow up appointments. Guess why happened? Yet again I missed an appointment and couldn’t see the rheumatologist. They had cancelled my last app so I was long over due a review. Haematology told me that the clot is outside my Hickman line but they are still waiting for the full report. Then they dropped the bombshell. My line has to come out. Regular readers of my blog will know I’ve had 6 lines inserted. They are incredibly painful to have put in and taken out but it’s the only way to access my ECP treatment. I was also told I can’t have ECP until I’m 6 weeks clear of treatment for the clot. This thought fills me with dread. This means my GvHD symptoms will flare. Also there is no guarantee they will put a new line in as there maybe too much damage in the vessels. I’m absolutely gutted.
Fortunately I bumped into the specialist nurse from ECP. I explained what’s happening to her. She said it might be possible to give me ECP once I’m off the blood thinners. One of the possibilities is that I get admitted and have a femoral line inserted. This goes into your groin. Then have ECP and go home the next day. Then the whole process is repeated every two weeks. Sometimes I just want to shout and scream. It’s hard enough coping with all this any way, yet alone have to put up with all these complications. It’s rare that I feel sorry for myself but this has pissed me off.
I think what’s added to my mood is missing the other two appointments. My skin is awful just now. It bruises really easily but that’s probably down to the steroids which the new doc slowed down the weening of. Now I drop by 1mg every 10 days. I’m currently down to 9mgs. Can’t wait to be off them. As well as bruising my skin is very very itchy. That is a quality of life (QOL) issue. It’s like having electric ants crawling all over me at times. It’s almost unbearable. I can control myself and not scratch when I’m awake but when I’m asleep that filter doesn’t work amd I wake up covered in bruised and scratches. They look awful as you can see from the pictures. The red ones are from scratching and the blue/purple are from where they tried to get a cannulas in for my CT scan. I also missed rheumatology and really wanted some tips on managing my very stiff, painful and weak muscles and joints. Again this is a QoL issue.
I know the clot is life threatening. I’m not stupid and I’m grateful that my fantastic team picked it up. What saddens me is that the appointments that would have helped my QoL were the ones that had to be shifted. Yet in a weird way they will make more difference to how I feel.
Despite missing out, both departments were helpful. The receptionist squeezed me in next week for the dermatologist and I literally bumped into my rheumatology consultant in the corridor. He said he would see me in a special clinic he is running on New Years Eve I guess I should be grateful and concentrate on the fact that Kings are saving my life again and nice people heard me and accommodated my request to be seen sooner rather than later.
If you are the praying type, please pray that things work out and the clot disperses and that the GvHD (Graft Verses Host Disease) doesn’t get too bad and I can start treatment again as swiftly as is possible.
Finally I also want to say thank you to my long suffering partner and family who always bear the brunt of news like this and carry the pain and tension too. Love you all loads.
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