I'm a PKD patient with a son on dialysis

[Mom3]

I've known I had PKD/ PLD (plycystic kidney and polycystic liver) for more than ten years now. Ironically I learned of my diagnosis after my son was already in the process of kidney failure for unknown reasons. He went on hemo-dialysis at 19 years old and he just turned 27 in February. Yesterday, he had a second fistula operation, outpatient and is doing well from it. Dialysis has been a very tough life for him. He has serious bone deterioration and has had several breaks and even after parathyroid surgery continues to run high PTH.

Recently we went through a real nightmare where his old clinic misfigured his dry wt and he had to go through having his lungs drained and pericardial window. (I'll save the details for the doctor's post. It's quite a story.)

He is on disability. I still try to work at my job as a state employee but my work has gotten really tired of working with me and since I exhausted my FMLA last school year, I know they won't have to work with me, and I'm not optimistic that they will continue.

I am excited about finding this forum and I'm looking forward to getting acquainted with more of the renal community and hope that eventually I can get my son interested as well. Unfortunately his response when he is not on the machine tends to be one of denial and avoidance and he will not attend things like the annual AAKP conference (my spouse and I went once and he is not much for researching his disease.) I tend to be the opposite and I've been thrilled to finally find a PKD group in my area, at long last. In fact someone from the group gave me the link to Ihatedialysis.

[Rerun]

Mom3,  Welcome to our site.  It is hard to watch your child go through this, I'm sure.  Where are your from?

We have young people here your Son's age, but I understand how it is nice to bury your head in the sand too.  Take a look at the posts here.  There is a thread on PKD, and you can use the search tool to find it.  You will find this site is very helpful and fun.

[Mom3]

Thanks so much for the welcome. It is incredibly hard. I often wished it would be me.

Be careful what you wish--because it seems it will be both him AND ME!! I threaten (teasingly) to get a dialysis chair right beside his so I can bother him during dialysis as well as the rest of the time...

We're SC folks. I may be wrong, but I think there are fewer resources in place down here. My son dialyzed at a clinic in Alexandria VA and it listed all sorts of support groups etc and family support also. The PKD group that I found through picking up a random brochure is the only off line resource I've accessed...

I can already tell this site is going to be valuable to us!

[goofynina]

Hi Mom3 and once again, Welcome to the best website regarding this matter.   You are going to enjoy being a part of this website.  Any thing you have to say can be heard here, any questions you may have, can be answered here.  We all have something in common here, dialysis.  There are so many awesome people here that are willing to help, listen and answer your questions and share their stories.  So please, make yourself comfortable and start reading the many posts that are here.  Dont be hesitant to ask any questions, and i (we) look forward to hearing more from you (and your son)   Take care for now......
Goofynina

[Bajanne]

Welcome to this site!  This is just the place for you - a caring sharing community of people who understand EXACTLY what you are going through.  Feel free to vent when you need.  Ask questions.  Answer some questions where you can be of help. You have lots of posts to read.  I am a teacher, so I am giving you that as homework.   Remember this site has been going since August 05, and it is getting bigger and better.
I hope you have clicked on General Discussion and read the site rules - just some things to help our site go better.
So, welcome again.  Don't be silent.  We are here for you!

[Black]

Hello D,

Sooooo glad to see you here!!!  I think you're going to LOVE it.  I look forward to meeting you and your son.

Lorelle

[angieskidney]

Mom3, I can relate to your son. I have been sick since birth but they didn't discover what was wrong until I was 9. I started dialysis at the age of 16. I was lucky however to get a transplant real fast (2 months) but in a way it was not a godo thing because it allowed me to pretend I had no health problems. With the transplant medication's sideffects I gained weight and then stopped taking them. At 16 I didn't want to be fat. At 16 I didn't want to keep an eye on my health since I felt "I am no longer sick and don't want to act like I still am sick!! I want to enjoy my life while I can!!"

11 years later I lost the transplant. I don't feel guilty for how I lived my life because at least I lived it! I got to have my youth! I almost didn't get it because while sick I never really got to live it! The transplant was a blessing!  But once I was on dialysis again I was in denial! I didn't want to lose all I had! I didn't want to live like an "old sick person"!!  I wanted to have my young life!!

So yes, even though I am 32 now, I can relate. Give him time. In time when he gets older he will be interested in the information like I finally am now.

[hephziba]

Hey there welcome   

[Mom3]

So many warm welcomes!!! Makes a person feel great. This site is just what we need...

Yes I read the rules and I've been exploring, reading posts, doing the best I can. Bare with me, I may not be as computer savvy as some of you younger folks. I'm 55 and went to a college that didn't even have a computer on campus!! This sort of thing is relatively "new" to me. I usually just do e-mail and search...

Thanks so much for sharing, Angie. I do agree and hope that my son will make it to be older so that he can gain the maturity you have on your disease. He got diagnosed with kidney problems at about 12 and has had special diets and medication most of his life, with just about every complication one can imagine since going on dialysis. Since he smokes--started at 18-- and usually has lab problems he hasn't been seriously considered for transplant, though his father has wanted to donate a kidney. (Being PKD I don't have any organs anyone would want!) Very frustrating for parents as you can imagine, just as your going off your anti-rejection meds had to be for your family. It is hard for someone my age to relate to how he must feel, having lost any semblance of a normal youth. Your perspective helps me to understand what may be his mind set.

Thank you,
Mom 3 (Doris)

[Epoman]

So many warm welcomes!!! Makes a person feel great. This site is just what we need...

Yes I read the rules and I've been exploring, reading posts, doing the best I can. Bare with me, I may not be as computer savvy as some of you younger folks. I'm 55 and went to a college that didn't even have a computer on campus!! This sort of thing is relatively "new" to me. I usually just do e-mail and search...

Thanks so much for sharing, Angie. I do agree and hope that my son will make it to be older so that he can gain the maturity you have on your disease. He got diagnosed with kidney problems at about 12 and has had special diets and medication most of his life, with just about every complication one can imagine since going on dialysis. Since he smokes--started at 18-- and usually has lab problems he hasn't been seriously considered for transplant, though his father has wanted to donate a kidney. (Being PKD I don't have any organs anyone would want!) Very frustrating for parents as you can imagine, just as your going off your anti-rejection meds had to be for your family. It is hard for someone my age to relate to how he must feel, having lost any semblance of a normal youth. Your perspective helps me to understand what may be his mind set.

Thank you,
Mom 3 (Doris)

Welcome to the site, one of our moderators is bajanne2000 and she is 56.  I only mention it so you know that we have members of all age groups here representing.  Again welcome to the site.

- Epoman
Owner/Admin

[angieskidney]

So many warm welcomes!!! Makes a person feel great. This site is just what we need...

Yes I read the rules and I've been exploring, reading posts, doing the best I can. Bare with me, I may not be as computer savvy as some of you younger folks. I'm 55 and went to a college that didn't even have a computer on campus!! This sort of thing is relatively "new" to me. I usually just do e-mail and search...

Thanks so much for sharing, Angie. I do agree and hope that my son will make it to be older so that he can gain the maturity you have on your disease. He got diagnosed with kidney problems at about 12 and has had special diets and medication most of his life, with just about every complication one can imagine since going on dialysis. Since he smokes--started at 18-- and usually has lab problems he hasn't been seriously considered for transplant, though his father has wanted to donate a kidney. (Being PKD I don't have any organs anyone would want!) Very frustrating for parents as you can imagine, just as your going off your anti-rejection meds had to be for your family. It is hard for someone my age to relate to how he must feel, having lost any semblance of a normal youth. Your perspective helps me to understand what may be his mind set.

Thank you,
Mom 3 (Doris)

I wish my mom would come on here because she is your age and she could tell you how much I frustrated her If you want I know I could give you my mom's email because like you she isn't as computer savvy and has told me how she only typed on a typewriter where you had to push the thingy over as there was no key for it to go to the next line lol!

Anyway, I am glad you are here

[Mom3]

  I'd be happy to e-mail your Mom. Sounds like we could relate! Thanks, Angie

[Sluff]

Just a plain ole welcome.