What a dogs breakfast!
Hello everyone ,
I hope you are ok and doing as well as you can with what life is throwing at you.
My life continues to be challenging. I am still an inpatient at Kings. Yesterday they told me I could go home. Then I was told I needed a lung function test, a chest CT and I also needed a blood transfusion before I could go. I didn’t let that dampen my happiness at going home and I set about packing my bags. My sister and niece came for a visit and she then took most of my stuff home to save my partner needing to carry that as well as support me. It was approaching 9pm and I had the scan and lung function and was just waiting for the blood transfusion to finish. Isn’t is great that a stranger to me saved my life last night in the form of nice juicy red cells.
One of the senior nurses came in and he said to me “Kes I’m sorry to say the CT has shown a clot and you can’t go home” I was gutted. I also had no Pjs and no toiletries and no change of clothes and no food or teabags because my sister had taken them all home.
I spoke to my partner and shed a few tears. I was so looking forward to getting back into my own bed and being warm and cozy. My room at the hospital is really cold. I don’t like the cold at all and I’m sure that’s why I’ve got a stiff neck on top of everything else.
I gave myself a talking to and went into practical problem
solving mode. I spoke to the nurse and she was able to get me some fetching green hospital pjs. She also gave me a toothbrush and a little tube of toothpaste that tasted like soap. Beggars can’t be choosers.
I put the pjs on and slid into bed and watched some crap TV.
The nurses this morning have all been incredulous at what happened. They are a lovely bunch. I won’t know what’s happening until late this afternoon as that’s when the big ward round happens. The doctor I saw last night said I may need something doing before going home or I may be sent home on a treatment regime. She wasn’t sure and said the more senior docs would decide in the multi disciplinary meeting what was to happen next.
Meanwhile I sit here in my green PJs and I wonder where or when this is all gonna end. It just seems relentless. I try to organise things and commit to do them, like I did for Terry’s funeral this week. Then I find things get in the way that stop me from being fully committed yet my commitment is every bit as strong. The spirit is very willing but the flesh is fragile and unpredictable. I was lucky that the team let me out to do Terrys funeral. It was a privilege to be able to lay him to rest alongside his wife who died only a month ago. My heart aches for this couples only daughter as she tries to make sense of all this and get on with life despite the pain she feels. Her situation makes me count my blessings.
So the update for this as there was a gap in writing as a stream of medics came in. I saw my lovely Italian consultant. He apologised for having to still keep me in. He explained that he needed an opinion from the vascular surgeons about how to deal with the clot. He said he thought the line would need to come out in the vascular theatres but he wasn’t 100% sure. Then he told me my lung function has seriously deteriorated and that I needed a bronchosopy. He said a tube would be placed up my nose and into my lung. Then they would flush it with sterile water and then remove the fluid which would also remove some lung cells which they can then test. Sounds horrible. The various ways I’ve been tortured over the years are amazing. There seems to be no ending to these awful procedures. I think when you have a patient who has had to endure and continues to put up with so many horrible experiences, that everything should be done to minimise the impact of these tests. Psychologically these things add up and have a huge impact. Also it would just be kinder if these things were made easier for us long term patients.
Fingers crossed I get out of here tomorrow. I’ve had enough now. It’s only been a week but I want to be surrounded by my own things and be comfortable instead of being incarcerated in this iceblock of a room. At least one of the lovely HCA’s found me a heater so it should start to warm up.
Tonight I’ve been told my line can’t be used and I have to have my Iv’s via a cannula. That’s gonna be fun. Tonight I’m having IV antibiotics, a calcium infusion and a 6 hour phosphate infusion.
Let’s hope and pray that tomorrow brings good news.
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