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Saturday, 20 October 2012

IgA Nephropathy and me: Update 1

It’s been a couple of months since I last wrote about this and I have recently been asked how things are going. So, here’s an update.

USED EPO SYRINGE

[CLICK TO ENLARGE]

The intravenous iron made virtually no difference to my blood count; it raised it from a low of 8.7 to 9.1. The doctors weren’t happy about this. My kidney function has been steady at 15% for the last few months but I am now having EPO injections every week. I am possibly more drugged up than Lance Armstrong. Okay, maybe not... EPO should improve my blood count and two weeks ago it was up to a giddy 9.8 (A healthy chap my age should have a blood count of around 15)

My two brothers and my sister have had their cross matching results back and it is very good news. There are six tests and they look for positive reactions (which are bad) when they mix together the blood samples. A good result is six “zeros”. One of my brothers and my sister came out with those six zeros, which is unusual, even between siblings, so that was a pretty good result. The other brother’s result was three “1’s” which, if he was the only donor available, would still be okay to go ahead with a transplant.

As male kidneys are larger than female kidneys (you learn something every day here, eh?) it was decided that my brother will go forward as the donor, with my sister standing by as first reserve.

So in four weeks time my brother is off to Oxford Churchill Hospital again for a whole raft of more tests: Ultrasound (to check that he does have two kidneys – did you know that some people only have the one?), an ECG to check out that he’s fit enough for the operation, and an MRI scan with radioactive tracer to see how many arteries feed his kidneys (apparently the more there are, the riskier the operation – if too many then my sister comes in for testing). He will also be having discussions with a Nephrologist and the Transplant Surgeon.

I’m off to Oxford a few days later for a seminar on Kidney Transplants, to meet up with people who have had transplants already and others who are looking for one. All this is so that I know what I am getting myself into, which is no bad thing.

Donors and recipients have separate doctors advising them, so that there can be no pressure on either party to go ahead and the advice everyone gets is totally tailored to their own needs.

Having said that, my brother is keen to let me know what is happening at his end of things. He has been told that if everything checks out okay for him concerning all the tests, his doctor has told him that the transplant could happen about six weeks after his results are known.

Of course, all this is dependent upon my own Renal Consultant saying “yes” to the transplant going ahead. He is keen for me to hang onto my own kidneys for as long as possible as transplanted kidneys have a limited lifespan, because of all the anti-rejection drugs you have to take after the transplant. The good thing about perfectly matching kidneys is that their expected life after transplant is at the top end of the scale.

So, if my Consultant says “Hang on for a while with the transplant until more degeneration occurs” then at least the EPO injections should get me across Scotland in a better state than I was in on this year’s Challenge.

I am unbelievably lucky to have brothers and sisters who are willing to go through with this and also to have perfect matches. I've been on EPO now for four weeks and so that should make me feel less knackered until I can go for the op.

Well, that was all a bit lengthy and technical. Sorry about that! Either way, I should be okay for the Challenge in 2013. I would prefer to have the transplant and get it over with, but we’ll have to see what my consultant says when I see him again in four weeks time.

We live in interesting times.

 

27th OCTOBER UPDATE:

I’ve been injecting myself with EPO for four weeks and my blood count has risen from a May low of 8.7 to 9.8 after two weeks and is now at 10.7 so things are looking up on that front. However, kidney function has started to decline again and is now down to 13.8% and potassium levels rising, which apparently is not uncommon when using EPO but should be monitored closely.

43 comments:

  1. Alan, given the basic rottenness with which you have been landed by the fickle finger of fate, this is very good news indeed. (And also that you have superb siblings, which is probably not news to you.)
    Thinking of you on this side of the pond.

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    1. You can be dealt some pretty shitty cards sometimes Mark, but I reckon life is all about how you play them.

      I'm really lucky to have my brothers & sisters helping out and they are making a colossal difference.
      :-)

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  2. Heck, Alan, that's sobering stuff. I'm sat in a cottage in Glen Nevis right at this moment, and I'm thanking the gods for my health. I hope things go ok.

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    1. Well, I have to say, it's all looking good at the moment, thanks Colin. I'll soon be scampering up the hills again.
      :-)

      Glen Nevis, eh? Spectacular. Hope you're having a good break.

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  3. Thinking of you Alan hope all goes well :-)

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    1. Hi Steve
      Have you applied for next year, Sir ? Lord Elpus assures me the weather will be glorious: Sunny with dry, cooling northerlies and tinkling little burns, beer all at half price for the duration for the Challenge and free whisky at the Fife arms for everyone.
      (He is a very generous chap)

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    2. Yes Alan I have applied for next year, and I am really looking forward to the wonderful weather and the cheap/free alcohol what a wise man Lord Elpus is.
      After last years events at Miller Towers I know only too well about kidneys and how precious life is.
      Takecare

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  4. Mmm. I think i would stay with your kidneys for as long as possible. The good thing is your siblings will always be there for you as and when required. Not like a unrelated donor or waiting for a match.
    Easy for me to say though isn't it. Good luck anyway and i am pleased you are doing the chally again. Funny how you know already!

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    1. It's a balancing act, Al. I'm just a bit fed up being in this limbo, really. If I can see that there's a solution that sorts it out, then I just want to get it done.
      :-)

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  5. Good to hear that things are looking positive for you Alan and that the TGO challenge is looking like it will happen for you next year.

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    1. Indeed, James.

      I'm incredibly fortunate not to have to wait for a kidney to turn up from the list, really. It's a gift from my brother that is difficult to put into words: How on earth do you say "thank you?" No words are adequate for this generosity.

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  6. Hi Allan,

    Well it looks like things are going to move for the beste of you. I do trust the medical stuff will not intervene in us meeting up in next years challenge.

    Take care, see you somewhere on a hill soon

    Rolf

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    1. Thank you Rolf. It looks like an Oban start for us. (if spared) I'm looking forward to bumping into you, Sir!

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  7. What is worrying me about this Al, is that as you get better, I am getting worse. You haven't got an image if me gradually getting worse in your loft have you?

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    1. Phil's the one with all the pictures in his loft. The blighter is getting younger every year.

      Have you had that second opinion yet? I would definitely get one, Sunshine! This is not good!

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    2. It isn't good. But they are sending me for an MRI of head and spine. No idea when yet. Hoping sooner rather than later.
      I have found a lot of red wine helps. But daily dosage is expensive and leaves me incapable of anything :-)

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    3. The red wine is vital for an MRI scan - it shows the arteries up so much better than all that intravenous uranium.

      Good luck, fella
      :-(

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  8. Best wishes from me. I hope I will be following you (here) on the Challenge. I have never done it myself, and my knee problem is so unpredictable in its recovery it would be folly to go for an entry this time, but I do enjoy following the little band of bloggers I follow who will be out there.

    I am thinking of a leisurely caravan/Marilyn campaign next summer working backwards from Cornwall just cherry picking the most interesting ones.

    ReplyDelete
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    1. Thank you.
      I quite fancy the county tops and I've been rather absent mindedly trying to put together a connecting route...
      It is looking like a long one. However, it would be a joyous celebration of our country.

      I hope the knee sorts itself out Conrad.

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  9. Have you seen "Heights of Madness" by Jonny Muir. It is an account of walking/cycling the county tops - not very well written but worth a look, but if you're like me you may prefer to read it after you have done them?

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    1. No, I haven't, Conrad.
      But thanks - I shall have to dig it out.
      :-)

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  10. Good luck, Alan. At least you don't have to endure the stress of waiting for the TGOC draw, given that you're in Phil's '10 timer' team!

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    1. Hi Martin
      I know that this should happen, but I never take it for granted in case there's a bumper entry and the organisers change their minds...
      So I still find myself waiting for the fat envelope anyway.
      Although, today Phil did send through our finalised gpx routefile and routesheet
      :-)

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    2. Ooo, well done Phil. So glad I'm not the only one that organised. Laura wants us to get together next week to look at maps. When should I break the news my bit is planned? :-D x

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    3. We also have all our accommodation planned as well... Indeed, Mad'n'BadAndy has been reserving some of the more "difficult" places already.
      :-)
      Not that we're keen or anything....

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    4. Yep. Even planned a couple of parcel drops. I've found food that works for me, at last. Can't wait!

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  11. Alan,

    The road map through your medical issues will clear away some of the mist of uncertainty and trepidation. I'm glad for you.

    I have decided not to enter next year. I am planning to return permanently to UK in April 2014. I am in the process of buying a house on the Solway Coast and will need all my available time in between. I also want to do some walking round here, Oman Jordan etc.

    So you'll have to do without Sam Mcgee's cremation next year. Never mind, hopefully all will be well with both of us for TGO 2014, 565 and counting.

    Yours Aye

    Jim

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    1. You will be sorely missed, Jim! No Sam McGee's cremation! (I was going to do the lip-syncing thing...)

      You'll hate having your year off, you know... Come May 9:00am on 10th May, you'll feel like someone's cut off yourr legs!

      All the best to you, Jim,
      Alan

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  12. Alan,glad to read things are looking "on the up" for you.

    All the very best

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    1. Cheers, Mark.

      It'll get sorted. Keep looking forward, eh?
      :-)

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    2. I was not sure that it posted because my internet connection went down at the time I published the post and then couldn't remember what I said the first time! At least you were kind enough not to publish both :)

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  13. Best wishes, old boy, just keep away from Travis Tygart ;-)

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    1. You see, the Challenge is not a competitive event, so I can take as many drugs as I like! You should see my first aid kit! Rammed full of the little darlings.

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  14. If you are caught cycling on the Challenge you will be shown the red card :o)

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    1. Does it mention cycling in the rules?

      *nips off to check*.....

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  15. Good luck with the restoration job Alan and have a great time on the next Chally. I didn't apply this time because the cousin in Adelaide decided he needed to have a 'I'm getting bloody old mate' special party at the same time as the Challenge, so I have to be there. Incidentally, he's the father of Kate who got the kidney from her sister and then proceeded to have those five kids. Anyway, once again, best of luck. 2014 perhaps!

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    1. Thanks Des,
      Let's hope the builders don't make too much of a mess of it, eh?
      I recall you mentioning those five children. I can tell you right now I have no intention of following Kate's example. I have enough, already!
      Have a great party, Sir!

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  16. Pleased to read this Alan. I truly hope it all turns out for the best mate. Good luck!

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    1. Thanks fella.
      I've had 5 weeks of EPO now, but I still find I'm sleeping 10 hours a night, which is odd as I used to be a "7 hours was plenty" chap.
      Mind you, this is an improvement, as it had got to be 11 hours before the EPO started, so it looks like things are on the up. With all this sleep, I haven't noticed any change in my beauty though... Life's just not fair at times!
      :-)

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