hello everyone

[xtrememoosetrax]

First of all, I want to say thank you to all you IHD folks. You rock! What a wonderful, caring community this is. I have been reading a lot and learning a lot here – my stats say that I have spent about 7 hours on this site so far – and now I want to introduce myself.

First of all, I am not a renal patient. I have two friends with ESRD who are on hemodialysis. It’s funny, I’ve learned more from reading this site about what dialysis is “really” like than I ever have from them. I’m not sure if that’s because I haven’t expressed enough interest or asked the right questions (quite possible) or if it’s just that people generally don’t want to burden others with their medical problems, especially people who might not “get it.” Anyway, I have learned a ton from you guys.

I am here because I am planning to be a living kidney donor. It’s been an interesting journey so far. 

A very dear friend of mine – we have known each for almost 30 years, having met in our first week of college – went into renal failure several years ago. I thought a little bit about donating a kidney to her at that time, but there were some problems: our blood types didn’t match (and paired exchange was just barely getting started then) and we live about 2000 miles apart. I was therefore greatly relieved when a relative of hers who turned out to be a perfect match offered to donate. 

My friend has had, and continues to have, some very difficult struggles with catheter infections, vascular access, and the process of getting ready to undergo renal transplant, which for her involved the need to lose a significant amount of weight. So, although I didn’t/don’t entirely “get it” about dialysis, I did have an increased awareness of the issue of the shortage of organs, the ever-longer waiting list, etc. From time to time, I read with interest magazine articles about one celebrity or another who gave or received a renal transplant, which got me more comfortable with the idea that renal donation is a real thing that real people do and live just fine afterwards.

So then, when a co-worker told me this summer that her kidneys had failed and she had to start dialysis, I felt like maybe there was a reason why ESRD was coming up again in my life. It turned out that we had the same blood type, and so I started thinking:  Here’s someone with my same blood type, right here in my town – wow, what does this mean?  I am in my late 40s and thus far have been blessed with good health, and I started to think that perhaps I could share that good fortune with someone else. Basically, I felt like I was being “called” (cosmically speaking) to donate a kidney and that I could do this as a sort of tribute to my long-time friend. So I told my co-worker that I wasn’t sure yet, but I was going to look into donating my kidney to her, and I started the donor workup. 

She was very understanding about the fact that I was in research/investigative mode and wasn’t sure yet if I would really follow through with organ donation. I’m an information junkie, so I got on the web and read as much as I could about it – some of it scary, but much of it not. I continued with the donor workup and kept passing the tests. With each step, I had to think harder about whether this was something I could really follow through with.

Sure, it’s a nice idea to share the blessing of my good health, but what if I were to somehow damage my own health by making the donation? The risks are fairly low, but nonetheless exist. Why undergo elective surgery if you’re perfectly healthy and don’t have to? Would I suffer from anxiety due to knowing that I “gave away” one of my kidneys and now would be living with only one? My partner was supportive, but my family not so much. It surprised me, in fact (still does), how controversial the subject turns out to be, with each individual weighing the risks differently. You would expect people to support your doing something good for someone else, but of course your loved ones and friends are concerned about the risks to YOU. So you need to find out what’s involved in the surgery, what the postop period is like, etc. I have gotten a huge amount of helpful information from livingdonorsonline. 

Then, just about the time when I was reaching the end of the donor workup (still having passed all the tests) and feeling pretty comfortable with the idea of donating – yes, there’s a small risk to me, but the possible benefit to the recipient would be so huge – the would-be related living donor to my long-time friend backed out of donating. This meant that now I had TWO friends who needed a kidney, and unfortunately, giving two is not an option. (When I told my local transplant coordinator about my predicament and that I felt like I wanted to give two kidneys, she said, “We don’t recommend that.”  )

It felt (still feels) a little bit like Sophie’s choice or something. Yes, one person has been my friend FOREVER, has vascular access issues that make dialysis difficult, and has two young children, but in truth the other, my co-worker, deserves a working kidney and life off dialysis just as much. Who am I to make that choice? 

Fortunately, my co-worker was very kind and understanding when I told her what had happened. I still feel bad about it, though. Although she said she hadn’t been counting on anything, given that I had not yet completely committed to being a donor, it still had to be a terrible disappointment to her. And yet she was so gracious, and continues to be. 

So now my old friend and I, since we are incompatible blood types, are trying to see if we can get involved in a paired exchange. We’ve gotten off to a discouragingly slow start, but hopefully the pace will pick up once we get in the system or on the list or whatever. So far, I have been very impressed with the Alliance for Paired Donation. It seems like they’re really trying to get the paired exchange thing moving. 

So that’s where I am. It was only a couple of weeks ago that I finally got over here to IHD; I had seen references to it on the LDO site (thanks, okarol!), but hadn’t thought it applied to me. Now, though, what I have learned from you folks here has made me feel only more committed to being a living donor. Again, thanks for being here and being willing to share your struggles.

Oh yeah, my user name is my favorite flavor of ice cream. 

[okarol]

  Hi xtrememoosetrax!
So glad you came over - great introduction!
I hope things progress for you and you can arrange the swap.
Living Donors ROCK!
Best wishes to you both!


okarol/moderator

[Joe Paul]

Welcome xtrememoosetrax, good to have you aboard.

[Sluff]

Welcome to IHD xtrememoosetrax,

You sure love your keyboard don't ya...  actually we love it when we get an outstanding introduction from our members like yours. Are your two ESRD friends members of IHD? If not, why not ??

Thank you for intending to be a living kidney donor, we need more people like you. I hope you enjoy your time spent here on IHD because it's time well spent. I hope you have learned a lot and maybe you can pass the information on to your friends.

Lately we have spent a lot of time talking and posting about a trip to Las Vegas, well it may not appeal to some people unless they understood the impact the trip had on all those who were able to make it there, along with those who followed along on IHD. Epoman is the founder and owner of IHD and he had envisioned an eventual nationwide meeting for all those affected by kidney disease including ESRD and dialysis. So when the plans were put into motion, and the first meeting materialized, we not only had a great time, but we saw Epoman's dream come to fruition. So as our IHD family came together to honor the late Epoman we were fulfilling our founders dream.

It just don't get any better than that. We have become family here and you now have become art of that family.

Thanks for taking the time to become part of the family.

Sluff/ Admin

[boxman55]

you da Man! Welcome to IHD...Boxman

[Aldente]

Welcome.

[oswald]

 

[Romona]

 

[tamara]

  xtrememoosetrax

Great Intro!

Glad you joined us, hope you find all your looking for here, and I hope you have some fun too !

See you around

Tamara xxx ooo       

[goofynina]

Hello Xtreme, and Welcome to ihatedialysis.com, First let me begin by saying EXCELLENT INTRODUCTION,    I can understand all your emotions and what you are going through, and although it was a hard decision, i believe you made the right decision    Please continue to come and ask questions and post any comments and/or concerns of your own, we are here for you too.    Please invite your friends to come aboard and join the family, we'd love to have them also.  Good luck to you and your friend and we are looking forward to hearing more from you soon. 




Goofynina/Admin.

[willieandwinnie]

xtrememoosetrax

Your introduction was fabulous. I have gotten so much knowledge and support from IHD, I hope the same holds true for you.

God bless the donors!

willieandwinnie

[keefer51]

 

[xtrememoosetrax]

You sure love your keyboard don't ya...  
Sluff/ Admin

Ha ha, good one, Sluff.  Maybe I should have called myself Xtremelywordy, huh?  I didn't think I was going on THAT long until I actually posted; then I looked at it and thought, "Oh sh_t!"  I wonder if anyone has gotten to the end without falling asleep  .  The funny thing is that I'm not generally a very chatty person, so this might be the most you'll ever hear from me! 

Anyway, thanks for listening to my story, and thanks for the nice welcome.

xtreme m

[kellyt]

 

[kitkatz]

Good luck on the paired exchange for your friend. Welcome to the site!


kitkatz,moderator

[goofynina]

You sure love your keyboard don't ya...  
Sluff/ Admin

Ha ha, good one, Sluff.  Maybe I should have called myself Xtremelywordy, huh?  I didn't think I was going on THAT long until I actually posted; then I looked at it and thought, "Oh sh_t!"  I wonder if anyone has gotten to the end without falling asleep  .  The funny thing is that I'm not generally a very chatty person, so this might be the most you'll ever hear from me! 

Anyway, thanks for listening to my story, and thanks for the nice welcome.

xtreme m

Please Xtreme, we welcome your posts, whether they are short or long, we really would love to hear more from you and all you are going through.  It is a major decision you are making and there are not many people willing to even think of making the decision you are, so we value anything you have to say    Hope to be hearing more from you soon 


Goofynina/Admin.

[Bajanne]

Welcome to our community!  That was just the kind of intro that the site's founder, Epoman, loved.  When I first saw your name, I was wondering what it was all about, and at the end of that fine intro, you answered my question.  Great!
I was so moved by the frankness and genuineness of the path you have walked in coming to this decision.  It is clear that it was well thought out.  I am praying that all goes well for you and for your two friends (who are fortunate to have a friend like you).
This site is now a real family so feel free whenever you need to vent.  Just keep posting.  We would like to know what is going on with you - not nosy, just family.   


Bajanne, Moderator

[paddbear0000]

  You are awesome! And BTW, I loved your intro.

you da Man! Welcome to IHD...Boxman

Oh, and Boxman, she's a girl !   

[MyssAnne]

Yum. I LIKE that flavor!!!! Welcome, that was a wonderful intro, we are always happy to educate people on dialysis, I do the same for my friends, IF they ask, I will tell all!!!   

[xtrememoosetrax]

Hi all,
Thanks for the warm welcome.  I will be posting more soon!

xm

[Lori1851]

 
Sounds like you have kept yourself very informed on transplantation. We need more people like you willing to donate. I myself would love to but have been on bp meds for like 15yrs. I keep telling myself I gave my son life Once when he was born but man it sure would be nice to give him a second chance. All things work out for the good.
Lori/mom to Dustin 22 ESRD/ dialysis due to FSGS

[orphans_mom]

I'm new too and spent most of the day Sunday reading messages. 
By the way my favorite is extreme moosetrax.