Life on the Rollercoaster (update)

I should have known I wouldn’t get away with stopping the kidney updates! Thanks for your prompts, generally along with lines of “there’s been no news! what’s the news?”, and in truth the web site has never been so busy. How can I disappoint my eager public?

So we’ve been home for a couple of days and the routine is coming together. My iPhone is full of alarms to remind us of various drug times, and that sets us up for a scheduled wake up time – which is novel, as the past few months have been ‘wake up when you feel like it’!

Today was our first routine appointment, back at Southmead. I dropped Janet off at the door while I began the car park dance. I was quite fortunate today; only twenty minutes of driving around in tight circles before I saw a couple with keys in their hands – I tailed them slowly back to their space and nicked it, much to the annoyance of the trail of cars behind me! By the time I’d parked Janet had just about walked to the front door… ok, I lie.

Janet remains in some discomfort and occasional sharp pain, and the nurse thought she looked more than a bit pale. The worry was that her post-pneumonia blood count was low again, and they sent off a bunch of blood for urgent tests. We waited slightly nervously by the Costa; my loyalty card should have enough points soon too buy the franchise. If the readings were still falling she’d have to be re-admitted.

The results came back and showed that everything wasn’t too bad. I won’t say ‘fine’, but it wasn’t too bad. Hb was back up to 89 (norms are 120-150) and overall GFR was 32 (from a low of 14, pre-op). The nurse carefully removed all the sticking plasters that had covered the neck, wrist and groin wounds. The groin one was particularly entertaining, as the hair doesn’t stop growing just because there’s a plaster! The next appointment is on Monday. Our life is currently all about the M5…

The strain of the visit, mostly from the walking back to the car park, and the effect of firm Audi suspension and Bristol potholes (mostly adeptly avoided but still…) meant Janet felt really beat up by the time we got home. A knock on the door and another bunch of flowers did the trick though, and we had lunch in the flower bower. Flowers weren’t allowed in hospital, and are very welcome now.

And as far as food goes, Janet’s diet has returned to something akin to normal. The ultra-low protein regime of before is no longer necessary and she can have the whole sausage now! Todays brace of hard boiled eggs would previously have been at least two days’ protein allowance. Sugars are the new problem, with diabetes being a significant risk from the anti-rejection drugs, but we’re neither of us incredibly sweet toothed.

One does not normally speak of a lady’s weight or girth and so I won’t. But let’s just say that (oh boy!) Janet is still carrying a lot of fluid and we may have to buy some new tents – I mean, dresses. Much of that is from the kidney leak, and should soon be gone, but she was such a skinny thing and they had to fit the kidney in somewhere… I think she’ll always show a bump now. I had to buy a new set of scales too; the old ones weren’t up to it at all… :-p

Because of the continued albeit minor problems with blood count and the resulting tiredness, we probably aren’t home to visitors for another week. Once we are, we will be alert for anyone who may be even slightly unwell, and anyone who may have been exposed to other unwell people. Please don’t come around if you’ve been close to chickenpox or TB, Pneumonia or other serious nasties. She has next to no resistance to germs and catching one may be problematic.

Bottom line. All continues well. Thanks for visiting (via Internet!)

2 responses to “Life on the Rollercoaster (update)”

  1. Have passed the info to Jane so that she can read your blog.
    Nice talking to you and love to Janet.

    Mary, Peter and Liz


  2. Great to hear that all is progressing as well as it can for now, long may Janet’s recovery continue to move in the right direction. Love to you both xxx


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