Haemogoblin- the story so far

[haemogoblin]

Hi everyone,
I was about to start venting away in my nasty, sarcastic, ironic British manner which had been worsened by reading some of the irritating stories of successful transplants on this website (jealousy...).
But then I read some of the other stories from people who would make my suffering look like a finger splinter and I realised I was probably somewhere around the bottom of the pain spectrum.  So with some humility and even thankfulness on board (as well as anger), here goes:

I am a 31-year-old musician/teacher from Wales with skinny legs and arms and a round belly (I look like Mr. Potato head) who has had Polycystic Kidney Disease since birth (obviously; because it's genetic...)Last year after a spell in hospital for a burst cyst my creatinine levels rocketed and I was put on haemodialysis (like my father and grandma before me).  I was happy though because I knew it was only 3 months until my 56-year-old, healthy, non-smoking, non-drinking, vegetarian mother was to give me a kidney.  That was 21st September this year and apart from losing a few pints of blood on the operating table, mum and I and my new kidney were fine.  For about 36 hours. 

After only a day and a half, the kidney developed a veinous clot and died off pretty quickly so I had to go back under for an emergency removal of the offending article which, as I understand things, was ready to burst.  My poor mum was devastated. 

Now I'm back on haemo at my local dialysis unit in Cardiff 3 times a week and looking at the options available to me for the long haul as another live transplant for me, is out of the question.  Not keen on PD or home haemo as my dad's fistula puts me off- it looks like the view looking west from Denver...

Now I realise other people on this site have problems far worse than mine, but I'm still bloody miserable.  I'm supposed to be getting married next May and I feel like I've aged 10 years.  Last year I cycled 1000 miles from one end of UK to the other- right now I'll be lucky to walk to the end of the street.

Anyway, it's good to have a moan.  Dialysis is like politics- necessary but sooooo boring.  If it wasn't for re-runs of Frasier on channel 4 while I'm on haemo I think i'd kill myself.  Love to All.
Haemogoblin.

[Joe Paul]

Welcome Haemogoblin, good to have you aboard.

[Romona]

 

[Zach]

Welcome from across the pond!
 

[willieandwinnie]

haemogoblin. Great name. We are so glad you found us and look forward to hearing more about you. There's lots here for you to read and we will gladly answer any questions and you can't beat the support provided. Post often, please. 

[monrein]

Glad you found us H.  Come have a moan and share a laugh any time you like and unleash your dry sarcasm any time you like.  I look forward to it.

[Wallyz]

Welcome!

What's your take on Ospreys hosting Leicester?  Think  they can take the Tigers?

[devon]

Welcome and thanks for the posting.  You write beautifully.  I look forward to reading more.

-Devon

[haemogoblin]

Thanks for the welcome peeps,

WallyZ- I don't know where you're from but it's very presumptuous of you to assume everyone in Wales is a rugby fan. 

Just kidding, I'm actually just annoyed that we're sooo easy to read!  I think the Ospreys will have pretty much the same kind of season as last year.  In fact, all the Welsh regions will struggle at Heineken cup level.  And I think it's down to 2 things: 1. Atmosphere- the Tigers for example have the highest average attendance of any british rugby team, and welford road is like a cauldron even for guinness premiership games.  Plus they tend to play at a normal rugby time; 2.00 on a Saturday, whereas the Magners league have stupid game times when no one wants to turn up. Therefore the Tigers and such teams are used to, I believe, playing at a higher intensity. 2. Coaching- Ospreys have got rid of their head coach and replaced him with...the assistant coach.  Woo. 

In short though, I think the Ospreys can do the Tigers at the Liberty Stadium but even if they win the battle, they will lose the 'war' and go out of the Heineken in the quarters.

Hell, I should be on a rugby forum not a dialysis one.  My apologies to people outside of rugby land.  That's most of you I'm guessing.....

H-Goblin

[Wallyz]

I'm actually in the states, I'm just  a Rugby fan. I love the Heineken Cup , as well as the Southern Hemisphere super league.  I used to play far a team that sent players back and forth with Dunvant RFC, so our boys could learn how to  play. and the Dunvant Boys could drink beer and have brief meaningful relationships with American Women.

[cookie2008]

 

[boxman55]

Welcome to IHD please continue to post everyone loves a good rant on this site. Look forward ro them

Boxman, Moderator

[pelagia]

  to IHD

I'm really sorry to hear about the kidney not working out.

Hope you will find all the information and support you need here.

[paris]

   Great introduction!  You have found the perfect place to vent, rant and find support.  There is so much information here and if you can't find what you are looking for, please ask.  There are wonderful people here that are willing to help in any way.   I am sorry about the transplant. It reminds us that it isn't always as easy as one may think.  You have been through a lot.  Looking forward to more of your posts and the British humor!  Glad you joined us.





Paris,moderator

[idahospud]

 

[G-Ma]

 

[jessup]

 

[thegrammalady]

  this is a good place to land

[RichardMEL]

G'day H-Goblin (love the name... that's right up there with frankenarm in my books)

I think what you've gone through many of us who have contemplated or had live donations have feared - the rejection/loss of the donated kidney - specially so soon after it going in. I can imagine how awful your mum feels.. and I am sure you feel just as had having had that healthy organ taken from her for basically nothing good.. I know I would feel horribly guilty and forever think of it.

You took the chance though - that's a chance you HAD to take .. and a chance your mum WANTED you to take - what with the wedding and all coming up. It's just a horrible fact that you wound up being one of the 5 or so percent of transplants that do not survive 1 year.

Perk up... you're in Cardiff, who knows Capt'n Jack might show up with the Torchwood crew any minute now with some alien gizmo to fix you right up!! (well he might also hit on you too..... ).

Don't give up on transplants though. It still is your best shot at a more normal sort of life.. and just because your mum's had that clot doesn't mean another one will... so try and remain positive and hopefully you'll be OK and get something soon!

Welcome to IHD!

[Bajanne]

Welcome to our community, from one born under the Union Jack (Barbados, and living in the British Virgin Islands).  I think you must be the first person from Wales that we have on this board.  I had a Welsh teacher, Mr. Caines, in Sixth Form.  Love the accent!
I can see you are going to fit right in on this board.  You are soon going to see us as family     
So read as much as you can -'information is power' is the buzzword around here, and post as much as you can.  We need to know how you are doing.  Not nosy, just family.
Looking forward to hearing from you.



Bajanne, Moderator

[kellyt]

   Welcome to your new cyberhome.  I look forward to learning more about you.  So sorry to hear of your transplant loss.  It's a scary thing to think about, but it must have been a nightmare to go through.   Hugs to you and your Mom from all of us at IHD.