Here’s a vlog giving you a tour around my current living quarters.
https://youtu.be/02WgVn2EY-o
Today is a sad day. It was my uncles funeral and I’m gutted I couldn’t be there to honour him and support my cousin. What makes this so hard is that my lovely aunt died yesterday. She obviously didn’t want to be without him. My heart goes out to my cousin who has lost both her beloved parents within two weeks of each other. I’m so frustrated about not being able to do what I’d like in terms of helping out.
I am also very frustrated by the situation in the hospital. Last week I was told I was having a PICC line put in. At the time I reminded them to mention the stenosis and problems I’d had with having 6 previous hickman lines. The nurse cane and said the porter was on his way. This was 45 mins earlier than expected so I was rushing to finish my daily ablutions and take my meds. Then a nurse came back and said they had just phoned and said they couldn’t do it due to my compromised anatomy. Grrrr. This is just what I predicted.
When Manu the lovely doctor came to see me he said they had now booked me in for the hickman lime for the next day. He said the team would have a discussion as they don’t think that’s the right way to go. It’s a huge problem in some respects. My veins have had it so they do need to get some access to me. Heaven only knows what the solution is.
My phosphate is still needing to be replaced every other day and sometimes daily. They don’t know why I’m not maintaining phosphate so need to try and work out what the problem is. I also seem not to hold on to my calcium just now.
The other weird thing is my BM (blood sugar) gets taken in the morning sometimes. Today it was 2 one day it was only 1 On that occasion the staff made me have some glucose gel. Yet when you do a dip stick urine test it had glucose in it. That normally happens if you have too much globose in your system which is the opposite to the morning problems.
It’s wonderful that our bodies are so complex. It’s hard though when so many bits and pieces are wrong but there is no clear pattern to determine the problems.
It’s really soul destroying to continue to be stuck in hospital when I feel we are not making good progress and getting any answers.
The other issue that’s occurred is that one of my drugs has been misinterpreted. I take mirtazipine. It’s an antidepressant. I take it for it’s side effects, one of which is to create an appetite. Someone from another team has queried this depression and it’s been suggested that I see one of the team of counsellors to check in either the psychologist or psychiatrist. I said I’d do anything that may help but didn’t need psychological support. I did say I wanted a truthful answer to if my current physical state is as good as it gets. If it is, then I will do the work to psychologically adjust. I saw Phil today who is one of the psychologists. I’ve seen him in the past as I’ve come to terms with my diagnosis. He is a great bloke and really good to see if you hit a bump in the road. There was one point where I did feel
depressed and I went to see him. He checked the medications I was on and it turned out to be one of the drugs that was making me feel flat. He spotted it and advised me to change the meds and I was back to normal quite quickly. I trust him and appreciate his insight. Today he confirmed that I was psychologically robust and that wasn’t a problem contributing to my current predicament. If they keep me here much longer that may change. Lol.
I know some of my friends and acquaintances are medics. Would any of you have a clue as to what might be causing me to not hold on to my phosphate and calcium? Any ideas would be gratefully received.
I’d also like some suggestions for a project I could take on. I’m bored and definitely need some stimulation. Any suggestions?
https://youtu.be/02WgVn2EY-o
Thanks for all the kindness and messages. I am with you in spirit even when I feel so far away. Take care and stay safe. Xx
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