“There is no greater agony than bearing an untold story inside you.” Maya Angelou,
What follows is a diary entry taken word for word from my journal which I began to keep on the first morning I woke up in hospital:
Wednesday 3 January 2007
This morning I was moved to the transition unit. My care has been taken over by Dr Ronan Collins and his team who saw me mid-morning. I got my first blood transfusion as my haemoglobin was at 7. That is very bad apparently – how would I know?
I had another physical exam done and Dr Collins was not satisfied about my case so he referred me to Dr Catherine Wall, Renal Consultant. I was written up for a renal ultrasound and full details of all my input and output of fluids have to be recorded which means I have to pee in a jug until they tell me not to! Nice!
Dr Wall arrived and she asked me so many questions. I like her a lot as she has a no nonsense approach and really gives me confidence. We hit it off straight away and I knew I was in safe hands with her.
Thursday 4 January 2001
I woke up on the transition ward and had more bloods taken to be sent off to the lab [as opposed to the zoo? Where else would they go?] . Dr Ward and his team arrived up onto the ward and told me that my kidney function has improved slightly but it was still nothing to get too excited about. Who said I was getting excited? A kidney biopsy was the next step, he said.
My sister Rachel and friend Nuala arrived at the same time. While they were there the kidney team arrived (yes a whole team) – Dr Wall and Dr Phelan and I was told that my kidney biopsy is to go ahead tomorrow Friday. They did not go into a huge amount of detail as they said Dr Paul would explain it all to me. So many doctors names and specialities to get used to.
Risks from the kidney biopsy: Bleeding – so they will need to glue the kidney where they take the biopsy piece from. Lovely.
Also I will have pain and tenderness in my back and I will have to lie flat and very still for 6 hours after the biopsy. [Anyone who knows me will appreciate how challenging that was for me!]
I will get a local anaesthetic.
Questions from the team:
Am I nervous? No
Do I want a valium for the procedure? No
Just the local anaesthetic for me.
During the biopsy I will lie on my front.
Note to self: If I have questions write them down as I think of them.
Friday 5 January 2007
I should have been fasting from this morning but the nurses allowed me to sneak a breakfast in very early this morning – cereal and orange juice.
I was sick and you looked after me is a phrase which keeps popping into my head from scripture. It’s a comfort…in a time of uncertainty.
I was meant to have something called IVP today which is like a dye getting injected and then they follow it via xXy as it flows through to look for any problems in kidneys. Could not have it as I need to have 24 hrs steroid cover – look at me I am starting to talk like a doctor and I have only been here for three days!
Biopsy of my kidneys is to go ahead this afternoon.
Written after the biopsy
Had the biopsy today at 10am and writing this here now as I have been lying down flat on my back and very still for the last few hours. It’s hard to wrote while flat on your back. The lying still was a right pain in the back!
The biopsy was okay – I asked if I could watch as they were doing it. I think the consultant thinks I am a bit odd.
The biopsy was straightforward enough. Got the local anaesthetic – the needle hurt a bit but I have to get used to those!
He went in with a very large needle/probe three times and each time I could hear this pop/click as he snapped a piece of kidney off. It was a bit gross. He showed me the samples afterwards and they were the same size as the chord of an iPod earphones. Was allowed off my back after 5pm and I am very sore and hungry now.
Do I need to fast for bloods in the morning?
Is the IVP going ahead?
What are my kidneys doing now – any better?
So many many questions
A final year medical student is following my case so he is coming back on Monday to talk to me.
Saturday 6 January 2007
Had bloods taken.
Input and output of fluids and urine still being monitored.
Saw Dr Henry who is part of kidney team and they are not doing any more tests on me today. Kind of a relief but I still really want to know what’s wrong with me. So many people are texting and calling me asking if there is any news? No. None!
Biopsy results – preliminary – kidneys are normal in size and function has levelled off a bit which is down to the fluids I am being hydrated with.
One of the tests sent over to James’s has come back negative.
We will have a series of results available next week from the biopsy.
Have to wait and see what the treatment is. Not sure what they will be treating me for.
Still feeling sick today. Nausea is there all the time.
Really missing the kids and being at home but I know I am in the right place. [I almost said I know I am in a better place … careful now]
Sunday 7 January 2007
Exhausted this morning for some reason. Can’t understand why as I have been lying around for days.
Bloods taken. Dr Henry said no dramatic change in bloods.
Nurse will be giving me steroids tonight and in the morning and also a vitamin B12 injection as I have pernicious anaemia.Something else to add to the growing list?
My Mam, Cathal, Emma, Bryan
Phoncecall from Fr Joe and +Jim, Gerry and Eddie and Caroline
Fasting from 10pm tonight.
Want a random sample too – whatever that means! Is that like the random samples they make athletes give? I can assure you before you take it that it will light up positive for all sorts of drugs!
Kidney function the same.
No major improvement.
Monday 8 January 2007
Canula to go in for Dye test
Haemoglobin 10.4 because of the blood transfusions – this is better.
Creatinine 387 – still very high. Still way too high!
Calls: Auntie Jo and Cousin Angie
Texts: Harry, Rachel, Sheila, Gerry and Sandra
Had IVP done and no results on the file yet.
Told by Dr Wall that I will have results from kidney biopsy tomorrow
Tuesday 9 January 2007
Kidney function – stable
HB – holding own [Hb = haemoglobin Keep up!]
Cholestrol – normal
Weight – 11 stone
My canula leaked during the night so it has to come out and a new one will have to go in.
Dr Wall came into see me at about 4pm today and she said I am posing a particular challenge to the team. My kidneys are leaking protein and they need to find out why.
They are still waiting for biopsy results and one other result to come back and then they have those they will know a lot more. IVP was inconclusive.
While I was waiting I devised a mobile phone use policy for patients and for their visitors as it is very annoying when a phone ring tone almost causes heart failure everytime it rings. More of that later. These are the things you do in hospital when you have vast stretches of unbusy time ahead of you!
I’m not used to being this quiet and rested.
I am expecting results tomorrow – conclusive results and I have told Dr Wall to come to see me as soon as she has them. Tomorrow is my kind of D Day where I finally get to find out what’s wrong with me.
Rheumatic Fever was ruled in and out.
A virus picked up on travels has also been ruled out.
Something is attacking my kidneys. Why? What?
Still so meany questions. I am nervous about the answers but I will deal with it….. I hope.
End of diary entry for now