the waiting game

Some people assume that once somebody has a transplant they’re miraculously cured of all kidney related ailments.  It isn’t a cure; it’s simply another form of treatment.

We don’t know how long this treatment will last.  It could all go tits up tomorrow, but it could be a treatment which lasts for forty years.  In that sense it’s worse than haemoD, which we knew was four hours a session, three times a week, for ever.  And always.  Or at least until medical research brings some new form of treatment into existence.

Yesterday marked our two month kidneyversary.  Times flies.  You would think that by now things are settled, medication is fixed and life can begin to get less worrisome and more liveable.  You would be wrong, but we forgive you for making that assumption.

Blokey had his weekly clinic appointment last Thursday and it was ever-so exciting.  He’d lost 4kg since the previous week, we already knew that his creatinine* was down to 149 (1.686 mg/dl in AmeriSpeak) and they were so happy they said he could have a week off and they’d see him on the 29th.  Huzzah!

Our joy was short-lived though.  Blokey reminded them that he needed his stent removed and the delectable Dr. Nephro agreed that it should be done as a matter of some urgency and proclaimed that the person who usually arranged the appointments was very flakey in her/his forgetfulness.  Blokey was told to come in the next day and it would be removed.  It’s a simple procedure, although not a particularly nice or comfortable one, and doesn’t take long.  So, Blokey was up with the milkman and off he went to Hospital.  He rang me hours later, close to tears, to inform me that Dr. and Mrs. Nephro were panicking (I don’t think they were) and he had to have an ultrasound because everything was going wrong.  My Blokey is very dramatic.  This makes him both loveable, and a little bit hittable in equal measures.  He said that he’d been told his creatinine had shot up and that a biopsy was now practically non-negotiable, but he hadn’t actually spoken to anybody in Nephro Land and was just relying on messages, probably being brought down by work experience kidz.  He assured me that nobody was telling him anything and they weren’t allowed to.  Bless him. Ultrasound was fine, stent was removed, Blokey came home.  An hour later we toddled off to his company work bash (we got a mention AND a round of applause in the After Dinner Speech, how cringeworthy) and thus began a weekend of worry and frustration.

*sigh*

This morning we went to Hospital so that Blokey could have a chat with the delectable Dr. Nephro and have more bloods taken.  Remember the 4kg he’d lost last week?  That’s all gone back on.  Everybody is scratching their heads about that, but hopefully that’s just a minor irritating glitch.  We found out that his creatinine had risen to 199 (2.251 mg/dl) and this is what had worried them.  However, the kidney looked perfect (Docs words) and all his other labs are good.  I’ll ring you before I leave work with the results, said the delectable Dr. Nephro.  Usually they ring the next morning, mostly because it takes that long for them to get the results, but he could see/hear that Blokey was wound up and worried.

Blokey has spent the day playing Star Wars: The Old Republic and grumbling about pesky players stealing his bits (or something).  I’ve spent the day tapping my fingers on the desk, in between walks to the pharmacy to pick up carrier bags full of medication

(We don’t have this one, said the woman.  When will you have it, only it is THE most important meds he takes? I enquire. We’re expecting it to be delivered today, she tells me after a big sigh of annoyance and a slow meandering walk [5 steps] to the pharmacist and back.)

and the posting of important letters to benefit agencies and Christmas cards to neighbours.

Half an hour ago the phone rang.  It was the delectable Dr. Nephro, Phwoar.  Blokey’s creatinine is back down to 161 (1.821 mg/dl).  A biopsy isn’t required this side of Christmas.

And tonight we’ll be eating doughnuts in celebration.

*Creatinine is a waste product from the normal breakdown of muscle tissue which is filtered through the kidneys and excreted in urine. Doctors measure the blood creatinine level as a test of kidney function. To put all these numbers into perspective, MY creatinine is about 100 (1.13 mg/dl) which is within the normal range.  Ideally Blokey’s should be about the same and at least below 150 (1.69 mg/dl). 

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2 comments

  1. I’m glad to hear that all seems to be well. (and pleased that you explained creatinine to us. I’d been meaning to look that up…)

    I guess your blokey is one of those “more excitable” types. So is K, so I can relate. :-/ I don’t know how many times he’s heard a little bit about something and automatically considers the worst possible scenario is right around the corner. *sighs* Luckily it generally is not as bad as he believes it is.

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