Tuesday, March 23, 2010

*WARNING* Blatant Attention-Seeking

This is shameless self-promotion on my part, but for those who don't read or haven't the time to flick through the entirety of the weighty Irish Times, I offer a link to my article which was published therein today - it also contains a pic of me for those curious to know what a freaky dialysis patient looks like:


To those who have already read and taken the time to then visit this blog and post lovely comments, I am really grateful. It's actually been a bit overwhelming after going many months without talking to anybody outside of a few close friends about the day-to-day reality of this. I want to reply to each of you individually, and I will do that just as soon as I figure out how...technology is not my strong point and I'm still learning how this stuff works:-)


  1. Positive engery going your way. The article in the Irish Times was very touching and really hit the nail on the head. While not in any way as serious, I've gone through years of dealing with health problems and no only too well how the worst comment seems to be the "ah but you'll be alright" or "it could be worse".

    I hope the phone rings soon. You know, not just rings, but with the right person on the other end!

  2. Just read the IT article and followed through here to read some more. You sound like a strong person even though you might not feel it sometimes, so chin up, you can do it. And keep writing about it, it'll help. For one, you've made one more person here a donor. Hope it works out for you

  3. Hi Regina, I read you article today after work and was touched by it. I know about dialysis through a family member and have been present on many occasions in the hospital, they're long days... and I'm sure the nights are long and can be uncomfortable too. I have books 'borrowed' from the hospital library from long days passing time. Strange, but they've always been good books and its quiet time for me, but for the person its an entirely different story. I'm 28 and can understand all of what you're saying about normal life at that age, or whatever we call normal :) I know about the diet restrictions and the akwardness of it. I think its a good idea to keep this blog, and as someone else said, you are very articulate and a good writer. Bye for now, Susan

  4. Hi, I read your article today and found it very interesting. My mother went through the same experience albeit at an older age. She was waiting on the transplant list for 18 months before she got a kidney so don't lose hope. You will be rid of that machine someday soon.

  5. Just a quick post. I know you said in your IT article some things which concern you about your appearance. Your picture on the front of the supplement caught my eye so I read your story. I just wanted to say you're still looking very cute. I know this probably won't make you feel any better. Just a regular guy close to your age giving his two cents. Best of luck.

  6. Hi Regina,i'm also another person who read your article today. The way in which you expressed yourself and the honesty with which you spoke about your struggles was so admirable I had to go onto your blog to congratulate you on your progress. So well done on setting up the blog and although i'm sure i've no idea of how difficult your situation is, I just want to say that it sounds like you'll get through this and be an even better person for it when you do. All the best :)

  7. Hi Regina,

    I read your article in the Times today, and felt the need to wish you well ...very unfamiliar territory for me this empathy stuff, but your writing style must have brought it out of me.

    It's a cliche, but have to say it anyway, I was very impressed with the character you show - I know, Im sure you've had your fill of 'character building'. Just hang in there, you'll be walking on air when this is all done.

    Oh, and for what its worth, I agree with Stewart regarding your appearance.

    Good Luck

  8. Hi Regina,

    Greetings from far off Koh Lanta, Thailand, where I just stumbled across your article in The Irish Times during a routine office day in the dive centre today. I'm having the time of my life during my career break, but - wow!- it was so good to read your article as you are one of the people I've lost touch with during my gap year. It jolted me a bit.

    All I can say is that I'm in total admiration of your honesty and it's great that you are able to express your frustrations so clearly, warts and all.

    I think many people just don't know better when they try to give you ill-advised words of comfort, it's probably the only way they feel they can cope with confronting your illness.

    It's amazing, too, how we tend to 'skirt around' issues or fail to deal with them when there are clearly elephants in the room. Again, I just feel people think they can't cope, rather than having any malicious intentions.

    Have I words of comfort? Not really. But I can say that I had very troubled 20s myself before my own life came good and I got through to the 'other side'. I learned a hell of a lot from bad / sad / tragic experiences in my life between the ages of 20 and 24, not that I'd want to live through them again, but they made me a better, stronger, perhaps more compassionate, person.

    I really hope that 'the' call you've been waiting for does come soon and that you will be able to get your life back on track. You know that youth is on your side and, eventually, you will make it through.

    Other than that, mind yourself, and I will keep an eye on your blog.




  9. Hi Regina!

    That piece in the IT was marvellous - thanks for your honest sharing.

    The "invincibility" thing is tough, isn't it? If it's any comfort, in my experience, it's something that fades away at some stage during the 30s/40s anyway when, at some stage, life, our characters and Murphy's Law all combine to deliver a good whack in the face with a large wet fish (I know - poor comfort for you now). As one who's gone through the wars myself (although the circumstances were very different in my case), what was left afterwards was a tremendous sense of the beauty and deepness of life, combined with a knowledge of its frgility. You and Brendan WILL have an amicable separation!

  10. Regina, just wanted to say how touched I was by the Times piece. You have a fantastic writing style that is so direct, and yet so eloquent and compassionate. Keep up the great work on the blogging, Im sure it'll be of great help to others in similar situations and their friends and families. And don't worry, Im sure Brendan will get sent to the community home before long, Ruby2 needs him :-)

    Milo Shaper

  11. Great article. I don't think I could retain your brilliant sense of humour in the same situation.

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  14. Okay, it appears this is the only way I can reply to you lovely people who sent me messages - or so my friend Radge tells me and he is my blogging guru.

    Dot Com - thanks for the positive energy. I can be a cyncial little monster at times so I need all the good vibes I can get

    VinnyReynolds - I am pretty strong, but I do sometimes forget that. Glad you've signed up to be a donor, though hopefully you'll be so old and physically wizened by the time you die your organs will be no good to anyone (that's possibly the nicest thing I've ever said to anyone)

    Susan - I've been amazed at how many people have a family member or a friend who has suffered the same fate met by me and my kidneys, and by how much you all pick up about diets and the discomfort of dialysis. I should remember more often that while I'm the one actually going through it, my family are also living every second of it with me in their own way

    Barry - that's great to hear your mother got through the annoyance of dialysis and came out the other side with a new kidney. I hope she's still thriving. I know I'll get rid of the machine eventually. Perhaps with a ceremonial lurch of same off the tallest towerblock I can find.

    Stewart - you have fantastic taste!

    Paddy - it's great to hear the article moved people and struck a chord. Thanks for the words of encouragement and for taking the time to log on. I've been a bit overwhelmed by how supportive complete strangers have been. Gives me hope for humanity as well as for a healthier future!

    Brian - Character building episodes? Have had a few of those alright! None of them have killed me, perhaps they have made me stronger. Or more mental. Thanks for taking the time to post such a lovely message. And you also have fantastic taste:-)

    Ciaran - long time, no talk. Delighted to hear your year out is going well. You were so right to do it and I hope you find a means by which you can keep on living where there is sun and deep-sea diving. Thanks for saying all that. Maybe the twenties is the time for turbulence and I can look forward to my thirties being 100% serene! I'll log on to your blog for a look and keep up to date with all the fun you're having

    Francis - you're probably so right about invincibility being rather fleeting for everyone as life marches on. I do think I've probably been granted a glimpse of the hindsight that most don't get until they're much older and that has allowed me to stop sweating the small stuff. I would happily divorce Brendan in the morning!

    Milo Shaper - I see you're a fan of Home & Away. You haven't commented on my appearance, but your choice of television programme tells me that you too have excellent taste. I'm glad you enjoyed the Times piece and I wish you luck with your own 'issues' (I'm sorry, but I just couldn't help but notice the corrective footwear in your picture and the fact that you're a little purple) x

    Jack - I learned early on that crying gets boring very quickly. And it makes your eyes hurt. A black sense of humour is the only way forward!

    Delia - Isn't it insane the way we take our parents and all they do for granted? Your dad sounds like a tremedously strong character and I'm in awe of people who manage to do everything while on dialysis. I hope you don't ever reach the point of needing that treatment too - if i have any support to offer it is that I know they are improving the forms of dialysis there are all the time. I know my new kidney won't last forever and I'll probably be back on the big D in years to come, but at least I know it'll then be something much better than the 8-hour-per-day routine I'm on now.
    Thanks for sending me a message and keep in touch

  15. Hi Regina,

    Read your article on the way home yesterday after a particularly crappy day, and, as selfish as it may sound, you really put things in perspective for me.

    I work in the study & research of kidney disease, but it surprised me how little I had heard of people like yourself. That is to say, all previous images of those needing renal dialysis were of (forgive me) males, in their 50's, overweight/diabetic, and generally at a stage in their lives where health concerns are knocking at their door anyway, following a life lead without a care for their health. Needless to say, you appear to be the opposite of this. Which in turn indicates that, well, it could happen to anyone. It did give me a realization of the importance of health, even at an age where it is not, for most people, of paramount concern.

    I have set about ensuring everyone I know is carrying a donor card. Honestly, I hadn't carried one myself before I read your article, out of sheer ignorance.

    I sincerely hope that you get that new kidney, so you can enjoy your youth. You sound like an absolute buzzer anyway, but I can't imagine what you'd be like once you're off the ball and chain. I know it'll happen soon for you, and when it does, I know you'll make the most of it.

    All the best,

  16. I have an extra kidney that I'm not using and if you want it you're welcome to it. I'll be in Dublin the week after Easter and can get tested for suitability. Late forties, male. Let me know: evindaly@yahoo.com

  17. Hi Regina,

    I saw your article in the Times. It was a great article, but I was particularly taken by it because it gives me a glimpse at my possible future. I also have IGA, though my kidney function still at about 70%, and thankfully holding steady for now.

    Of course nobody knows when, but there is more than a sporting chance that I'll be hooked up to relative of Brendan at some stage in my life. I'll have to give her a name when I get it (of course, mine will be a girl).

    You know, I've never actually talked to someone else who had IGA! There are not many of us.

    I really hope your kidney comes soon.
    I'd offer one of mine, but in my case, you don't want it.

    I'll be following your blogs now, with great, and somewhat foreboding interest.

    Keep up the fantastic blog work.


    PS Would be great to hear from you dillonmail@gmail.com

  18. Hi Regina
    Read about you in IT, never met you but you sound like a very strong woman who has courage in spades. I always think that in life no matter what you have to stack the odds in your favour (the Padraig Harrington approach)and it sounds like you are doing just that.

    Hope it works out for you


  19. Hi, Regina,

    Great piece in the Times this morning. You underestimate your own strength and courage, I think. I have no idea what you're going through, though like most of the other commentators, have gone through my own wars, and, thank God, come through the other side. I do know one young person on diaylsis, who also happens to be in a wheelchair, and for her the diaylsis is the bummer, because that is what presents the real constraints for her, not the wheelchair.

    And you seem to be dealing with it with great good humour, though no doubt that comes and goes, too. I chuckled when I read your comments about the sledgehammer you use - good for you! At the end of the day, if people are uncomfortable around the subject, or don't know how to deal with it, that is their stuff: it is not your job to tiptoe around their feelings. Personally, I am a great believer in honest straight talking - it makes life much easier all round at the end of the day.

    And the two guys are spot on - you're a bit of a stunner! Keep on doing exactly what you're doing, and you'll come through. And this is the place to do the ranting and raving - you'll be heard.


  20. Great piece of writing/reporting - with honesty and humor and poignancy balanced in a story full of life's reality. Will hold you in out hearts and prayers Regina.


  21. Regina, read your article and would like to congratulate you for bringing your story to the Public - As an Organ Doner Card Carrier all my Teens & Adult life I applaude your Honesty and wish you well.
    If it's any consolation I have a work colleague who is also in his 20's or very close to the end of them - 2 Years ago I was at his wedding and last Christmas 12 months he undertook his 2nd Transplant as he had problems with his first transplant. I know that both your stories although linked are themselves individual stories but in telling them it brings the realisation to more and more people as to how important it is to tick that Box on their Drivers Licence or even to carry the Doner Card in their wallet. As you say in the Article "It’s probably worse because I’m young. Being sick in your 20s is an isolating experience", take heart as your message means more to your peers in helping them understand the benefit of Organ Donation which in Turn will help all organ donees [don;t know if that's a real word but you know what I mean :-)] - Well Done Again

  22. My skin colour and corrective footwear are both results of many childhood issues. Thank you for noticing. Maybe I'll start a blog about it .... if only I could think of a blog name as catchy as yours :-)

    Milo Shaper

  23. Hi Regina,
    Read your article yesterday in the IT - Really touching and insightful piece - you have a great writing style.
    I'm ashamed to say it but my second thought after reading and thinking it was so well written was 'I wonder if Regina would write something for my project?' - People these days...there always after something!
    What I'm doing is collecting 'True Irish Stories for Haiti' (www.trueirishstories.com) - i.e. Irish people's stories that can be about anything - The proceeds from the book I hope to publish will go to Concern. So if you feel like, I'd love it if you could send a story of yours - whether it involves Brendan or not.
    My third thought was 'Would you just wish the woman the luck in finding a kidney she deserves and don't be bothering her with your things' - Unfortunately my third thought was a slower typer! Seriously, the very best of luck in your search - hope the phone rings soon.

  24. I read your article after receiving a google alert. I have an alert set for iga nephropathy, hoping I'll read about a new miracle drug. There are actually some in trials right now...so I keep hoping.
    I was diagnosed with Psoriasis around 1999, with Psoriatic arthritis around 2004, and just last February, after a biopsy, I was diagnosed with IgA Nephropathy.
    My creatnine is 2.5, somewhat stable. I'm on 300mg of Avapro, 20mg of Lasix, 150 mg Lopressor, 10 mg Norvasc, Sodium Bicarb for low carbon dioxide, Lipitor, and Humira for the arthritis/psoriasis. My BP is still a little high, but mcuh better than the 180/120 at diagnosis.
    Thanks for posting. It's nice to know that you aren't alone and what to expect, because there's not much out there.

  25. I've just read your IT piece, thanks for writing it, and for sharing, I feel like I know a little bit more about what you and others like you are going through, along with what your illness means to you personally. That is the sign of a good writer. I hope your blog gets the attention it deserves, and, of course, that you get the kidney you need.

  26. Wonderful piece in the Irish Times Regina. It resonated with me at so many levels.

    You touch so eloquently on the 'invisibility' issue related to kidney disease. I've been attending a renal clinic since 2003, as my kidneys were impaired by high BP. While initially some doctor there said that I "definitely" needed a transplant, the lead consultant retracted that and I was left having to attend the clinic, take the meds and keep quiet. While my creatine readings, etc. seem stable, my BP can be high for no apparent reason as if it is angry with my body itself.Several changes to meds followed, each leaving me in a zombie-like state at times, with little recollection of the detail of the past several years and made doing my PhD in Sociology tortuous at times. Being 'invicible' not only cause puzzlement with my TCD supervisor, being a non-transplant patient seems to make you doubly invisible; it was only when a new doctor in the clinic took over my appointments did she think that the high BP might be caused by adrenal problems. I had multiple venous sampling last week to check if one adrenal might be the culprit - if it is one of them, a unilateral adrenalectomy will follow. Part of me feels this should have been checked years ago. Hopefully, if an adrenalectomy goes ahead, I might get my life back!
    Best wishes,
    Sean Reynolds

  27. Niall - Great to hear you're going to sign up for a donor card and encourage others to do so too. And if you ever come up with an old cure for kidney disease with that research you're doing, you might let us know:-)

    Dave - I was the same until I started this blog in that I never actually spoke to anyone with IgA either. Not to spout any psycho-babble at you or anything, but it does help to talk! I hope it's a long time before you get your own version of a Brendan - you should call yours something like Gloria or Beyonce

    Ross - thanks for the words of encouragement...if it worked for Padraig, it might work for me!

    Maire - Ranting and raving are my speciality! I'm glad the piece in the Times struck a chord with you and when I hear about people like that girl you mentioned who is dealing with dialysis on top of other issues, I marvel at how much the human being can cope with. Thanks for posting:-)

    John - I'm not the most religious, but your prayers and your positive thoughts will be much appreciated. Thanks so much

    True Irish Stories - have you an email I can contact you at or should I just look at the website?

    Brandy - I'm sorry to hear you're in the same boat as myself with the IgA. A lot of those drugs you mention aren't familiar to me, apart from the Sodium Bicarb which was on for a while before dialysis. From what I remember, it was like trying to swallow a lump of salt. Yuck! You're most certainly not alone. Keep in touch.

    Stephen - I'm not sure what my aim was in writing the article. To be honest, I didn't really think about who would read it and I just wrote what I was feeling on that particular day. I'm glad it struck a chord with you. Thanks

    Sean - you sound to be in an even worse limbo than myself! I can sympathise to an extent with the feeling that you're almost overlooked by your doctors. I feel that sometimes. Because I have no other health issues and because my dialysis is going ok, they seem to just glance at me and move on to the other, more complex cases. And in my head I'm screaming "hey, hang on, I have questions and things I want to say". I hope those most recent tests give you some concrete answers and set you on course for a treatment that will work.

  28. Hi Regina,
    My email is trueirishstories@gmail.com. Check out the website www.trueirishstories.com to see what its all about though.
    No worries if you'd rather not submit anything.
    Best of luck agaun in your quest for a kidney.

  29. Hi regina,I read your article while I was searching for info on peritoneal dialysis. Not for myself but for my husband who is at the lovely stage of "pre-dialysis" his function is now 15.He is in total denial of his condition and we are both heartbroken that this disease has struck us. People dont realise that you are not feeling lucky that its not cancer, it feels worse, like a nightmare. He is now 50, we have lived with it for 8 years and believe me it is no walk in the park. good luck to you, you are a beautiful young woman and I hope transplant comes soon. regards Bernie

  30. Hi Bernie,

    I'm so sorry to hear about your husband. If his function is at 15 now, he is probably getting to the stage where he's feeling really sick? My symptoms were never too severe, but I know some people really suffer with nausea and loss of appetite.

    If PD is an options for him, the doctors are probably urging him to go for that (they really favour it over haemo as there is less chance of infection and it is milder on the body). It is a real pain having to do it every night, but when the alternative is hospital three or four times a week, it's probably worth it.

    Is he on the transplant list?

    It can't be easy on you either. If you have any questions or if you'd like me to email you personally, please don't hesitate to ask...