A grateful heart

Well my week is going well as you can see. I’ve had another gift of life in the form of red juicy cells from an altruistic stranger. 

Later I saw the lovey Victoria. She is a great consultant to have in your corner. She said her and Henry had been chatting about various options for me including more steroids (groan). She said she wanted me to have a bone marrow biopsy (BMB) as my drastically low counts are perplexing and worrying. She also said she may want me to have an endoscopy. Oh what joy! She said that as they had hold of me they might as well look into what’s going on as she feels they may be missing something. She has referred to the gastroenterologist and re referred to a dermatologist because of the skin problems and itching. 

This afternoon a lovely registrar called Manu came and asked if it was ok to do my BMB. It turns out this lovely man is Buddhist but went to an Anglican school in Sri Lanka. He was so kind, caring, gentle and encouraging. As you can see from the picture of the tray, I had to have a few extra samples taken. Some of the needles were rather large too. He was very patient and gave plenty of local anaesthetic as well as time for it to work. He had to go in several times because of wanting the extra samples. Luckily he got what he needed. I’m relieved that’s over. They are a necessary evil for us haematology patients. 

The rest of the news is that I’ve grown some bugs in one of my lumens on the Hickman Line. I’m upset at the thought that it may have to be removed. They have taken extra cultures to confirm and will decide once those results come back. 

Symptom wise I’m the same as I was at home. My temp seems to have settled. I still itch and have gut ache and feel washed out but so far I  don’t feel worse for the treatment. Often the cure can be worse than the cause. I’d love to be at home but I know i need to be here for now. So it’s seems I’ve now faced down sepsis 11 times. Definitely beating the cat now in terms of extra lives. Lol. 

The day wasn’t all horrible tests. I also had a nice visit from Emma. It was good to catch up with another long termer. We made Victoria slightly lost for words when she came in. 😃

While I was lying on my bed putting pressure on the biopsy site to stop the bleeding another young doctor came in called Anna. She had a brilliant bubbly personality. She said she’d been asked by Victoria to refer me to dermatology but wanted to know from me what input and treatment if had so far. I was explaining about all the drugs and she thanked me for helping her to learn about something she didn’t know much about. What a great attitude. Her and Manu will go far because they know how to be alongside people and put them at their ease. It’s a long time since we had the culture of doctors being 6 foot above reproach. It’s so much better when we all work together for the common good. Patients need to be seen as partners in the healthcare relationship. My lot certainly know that and for that I’m grateful. Thank you Kings haematology and all the team past, present and future for all you do to solve the puzzles of our weird illnesses as well as keep us breathing and experiencing life. You have my gratitude and respect.