Hey everyone =D

[bojenkins]

Hi, I don't really know what to say so I'll just summarize my story (even though it's really not that long in the first place).
Uh, I was pretty much perfectly healthy my entire life (except for a severe bout of malaria when I was 12). Shortly after my 15th birthday, I started get splitting headaches that got progressively worse over the next 2 weeks. I felt like my brain was literally swelling (in fact it was). Then, on October 7, 2008 I had a seizure.

Not sure what exactly happened next, all I know is that I woke up 5 days later with a HD catheter in my chest and told I needed to start dialysis. I started HD, and did it for 4 months. I had to stop because it was interfering with my school work. I got my PD catheter put in on Christmas eve 2008, and started PD in January 2009. I've been doing it ever since.

I found out last week that my mom's kidney is a match, so hopefully I'll get my first transplant next summer before I go to college. I know I've haven't even been in dialysis for 2 years, but it has been very difficult for me. My younger sister has autism, and my dad hasn't exactly been around. I'm really glad I found this website...it's great to find people who can relate to you. I've had problem with adherence in the past, and when you tell them you hate dialysis, it's almost as if they judge you. I can't stand it.

Anyway, I did have a kidney biopsy, but my doctors aren't sure what caused the sudden kidney failure. All they said is that my kidneys stopped growing when I was younger for some reason and weren't working effectively anymore. Some have guessed (and I kind of agree with them) that perhaps I developed Acute kidney failure when I had malaria and it went undetected, eventually developing into Chronic over time.

Alas, C'est la vie (That's Life). Also,I think the Smileys on this website are SPECTACULAR 

[okarol]

  Hi bo,
I am glad you joined this forum - sounds like you'll benefit from being here and it's great to have you share your perspective. It's tough to go through what you've experienced at such a young age. My daughter started dialysis at 18 years old and I know she felt isolated from her peer group because she didn't want to talk about her illness. Keep coming back!

 

okarol/admin

[jessup]

G'day and 
 
 
 

[galvo]

G'day, Bo, and You've just gained a lot of new friends.

[natnnnat]

Hi Bo!  My husband had renal failure at 19, he said the other night that they thought it took about a year to fail but he ignored all his symptoms till it was all over red rover.  They never worked out why his kidneys failed.  So he woke up in hospital like you, and was told, you're going on dialysis.  Apparently his renal doctor told him he was an "angry young man" for a few years, and I don't blame him for that.  But he is 43 soon, and full of beans.  This is a good friendly community here with a lot of experience, so when you need to, ask questions, people will answer and come up with helpful suggestions.   
 

[Jean]

Hi Bo and    to IHD. Sorry that you had to go thru so much so early in your life. Hope the transplant works out for you, but in the meantime, come back and talk to us often.

[Bajanne]

Welcome to our community!  So glad that you found us and joined us.  You will find this place a great help in your dealing with your renal challenge.  This is the place for information and support.  Please think of us as your new family   Just keep reading and keep posting.  Let us know how things are going with you.  Our caring thoughts and prayers are with you concerning your transplant, and we will be rejoicing with you when it happens.
Looking forward to hearing from you.




Bajanne, Moderator

[Rerun]

Hi Bo and welcome to IHD.  There is a lot of good information here.  You can come here to vent so you can get it out with people who understand.  That way friends and family won't think you are angry all the time about dialysis and you can lie to the Transplant Evaluation Team.  You can say "Sometimes I get frustrated with dialysis but I'm dealing with it."  Which will be kinda true.  You can come on here and say "it really sucks big rocks" and we will agree.

Rerun, Moderator       

[cariad]

  Bo!

Wow, you've had some challenges early on - malaria and ESRD? I am curious to know how (or rather where, since I think the how is fairly obvious) you contracted malaria. I hope it was at least someplace exotic and fun for you. Is the malaria still giving you issues? I would not be at all surprised if malaria crashed your kidneys, especially if they were already somewhat fragile. It is a demon disease, malaria.

I hope you find IHD informative and keep coming back here for support. Rerun put it best. We know how hate-able dialysis is, and I am appalled that speaking your honest feelings about dialysis would factor into an eval one way or the other. I would tell them that your hatred toward dialysis can only drive your post-transplant adherence. They cannot argue with that one, I reckon.

[MooseMom]

My 19 year old son has high functioning autism...or it may be Asperger's.  I can understand the challenges your mother must be facing.  My husband's younger brother is autistic.  Siblings of people on the autistic spectrum run the risk of being overlooked by their parents, which is what happened to my husband.  I hope both you and your mom are being well supported by family, friends and professionals.

Adherence/compliance is a very very big deal when it comes to transplantation.  Your mother may literally give you life TWO times, and to be non-compliant is dishonourable to her and dangerous to you.  You deserve to give yourself the best chance possible to get off and STAY off dialysis.  There will be a LOT of people who will be there to help you achieve your goal, but ultimately it will be up to you to give yourself the benefit of a long and healthy life.  The last thing you need is a lecture from me, but you see, here at IHD we look after each other, and if it means listening to a lecture or two along the way, so be it!
We are all so glad you are joining us!  I look forward to reading many posts from you!

[Fox_nc]

I spent my high school years on dialysis and trust me, I know it sucks! I got my first transplant (from my mom) when I was about your age so I can really relate.  I wish you both the best of luck! It's a scary scary world, but this site is a great resource!

[bojenkins]

Thanks for the warm welcome everyone 


I ended up getting malaria while I lived in Africa (Nigeria, specifically). It really is a terrible illness -- strikes without warning. As for my younger sister, she's actually very high functioning. She just has problems with communication.

I don't have any problems with adherence anymore, (my doctors threatened to force me back on HD and I caved) so I think I'm actually pretty well adjusted to this dialysis business (as frustrating as it may be). If anything, I'm extremely worried about the transplant. For those of you who have had kidney transplants (or have people close to you who have) -- what is it like?

How bad is the pain after the surgery? How big is the scar? What side effects did you experience, and how severe were they? How long did it take you to recover? And any other information you feel comfortable sharing would also be greatly appreciated 

Anyhow, I can't fully express how grateful I am to have found this place. This dialysis affair can lower my spirits sometimes...or maybe that's just teenage angst (I can't tell the difference most of the time. )

P.S -- This was super awesome

G'day and 
 
 
 

[cariad]

Hi again, Bo. It would probably be a good idea to go to the transplant section and pose your questions there. Most of the answers will vary so much from individual to individual that all you will end up with is a range of experiences, but it should give you a good idea of what may be in store for you. Also, you can read through the discussions that are already there to get answers to many questions, some that you will not have even realised you had. I will briefly take on the scar issue here, since that is the easiest to answer. I think my scar is probably 4-5 inches long. I believe the size of the scar has much to do with the size of the kidney they are inserting. My 2nd transplant (the modern one) came from my husband, who apparently had an outsized kidney, so yours would likely be a bit smaller. For the donor, the size of the scar depends on the size of the surgeon's hands, which I always thought was humourous.

[natnnnat]

Hi Bo!   
Gregory's scar is about 15cm long.  I have put your other questions to him, and typed in his answers:
How bad is the pain?  "It's... pretty bad, like any operation, its bad for the first three or four days and then you get used to it. Depends how much pain you can take as well, its worse if you haven't got a very high threshold for pain."
How long did it take to recover:  "I was in and out of hospital for about a year afterward, different complications and getting it to work.  That depends how well you are too, depends on how long the operation goes, depends on how good the kidney is, if you have any rejections, depends on lots of things.  Took me about a year. "
note, once Gregory's kidney settled in he's had no trouble with it since.  But the first year was no cakewalk.   
I've seen other people in IHD whose transplants didn't have the complications gregory's did.  Look for the thread about Bette1's transplant. 
Hope this helps Bo!  Warm hugs. 
 

[Zach]

Good to have you join our community!
 

[peleroja]

Welcome to the group.  Tons of good information and friends here.  Glad you found us!