Wednesday, 8 April 2015

Stuck in the Middle with you.

"Well I don't know why I came here tonight,
I got the feeling that something ain't right,
I'm so scared in case I fall off my chair,
And I'm wondering how I'll get down the stairs,
Clowns to the left of me,
Jokers to the right, here I am,
Stuck in the middle with you."

by Gerry Rafferty / Joe Egan (Stealers Wheel)

I better explain. Mike had a full four hours of dialysis on Saturday, they say it takes a bit of getting used to. By the end of it Mike felt awful. He said he felt as if his haemoglobin was really low, so they checked and it was down to 84 (8.4 in old money.) Last Tuesday before dialysis had started it was at 107 (10.7). Mike felt (and still thinks) that the dialysis is responsible. A doctor came and saw him and arranged for Mike to be given 2 units of blood with his dialysis yesterday. Some of the renal nurses obviously don't know much about the blood transfusion system or its rules as when Mike arrived yesterday there was no blood, they had ordered it on Saturday, failing to say it was for Tuesday, so when it arrived at the hospital Easter Sunday, Mike wasn't there and so 48 hours later it was used for someone else. Rules are rules. Mike was adamant, no blood, no dialysis. His hb is down to 80 (8.0) and he is feeling really rough. He can hardly move he is so fatigued. 

The added problem in all this is that the Renal team say it is his myeloma that is making him anaemic, his platelets and other blood figures have all dropped. His haematology team say it isn't his myeloma but his renal problems causing the lack of red blood cells. So Mike and I are stuck in the middle of two different teams, neither team of nurses understand the other side's discipline and actual consultants seem very thin on the ground, obviously all off hunting Easter eggs. 

As I type Mike is in the dialysis unit, hopefully with a couple of units of nice red blood. I'm off out into the garden, we've had a run of three nice days and I've been pottering while Mike has been lazing around unable to move. 

Busy Bee Lorna.
Of course the real irony of it all is that eventually the jokers and clowns will manage to get their acts together and Mike is eternally grateful to them and at that point I end up looking like a fool as I'm the one who can't keep her cool when they have been refusing to listen to him. 

I think I'll stick to caring for my plants! 


  1. Lorna, Are his MM docs sure that the kidney issues and low blood counts are not the MM? Not sure what his MM markers say, but, if they look good, did they check to see if he has become a "non-secretor" with a PET CT scan or bone marrow biopsy? This sounds awful fishy and really disconcerting that they don't seem to know what's going on. How frustrating for you both. Sending hugs across the pond. xx

  2. Hi Lorna. What a nightmare for you both. But please always lose your cool it may be the only way to get the different departments in our hospitals and gp surgeries to communicate and build the awareness. Make time for you and chill for a while hunni. Love to you both xx