29 dealing w/CKD

[MommyChick]

Hello there !
I happened to come across this page & thought I would introduce myself...

I am  29 yrs old from PA. I have been dealing with CKD since I was 12 yrs old. My story is kind of long but I will try & shorten things. I first found out that both my kidneys were failing when I was 12 yrs old. I never ever felt sick but one day I was at school & passed out. As soon as I had passed out my parents had taken me to my doctor at the time & they didn't see anything wrong with me so they decided to do blood work. By the next day they had answers, it showed I was extremely anemic! So they sent me to a pediatric nephrologist and within the next day they were telling me both my kidneys were failing & only working at around 20% and I would need to be added to the transplant list right away!
Now right away I had family testing to be my match. Right before my mom was going to be a donor for me a match came available for me on the waiting list. It only took 7 mths ! I was 13 yrs old. It was very scary to be going through that at such a young age. Lucky the kidney last 9.5 yrs with only having one slight rejection about a month after having the transplant. For that 9.5 yrs life was finally normal graduated school & went on to college to get my degree in graphic design, things were going great & it was like I had never been sick. Then in 2005 some blood work showed that the kidney was slowly failing! I was devastated I never wanted to go through another transplant again because of remembering the pain I went through when I was 13. Well the doctors tried everything to save it but it was to far along & they couldn't save my transplanted kidney. At this time I was dating this guy & figured, eh he wont stick around through all this because I had gotten very sick & was in & out of the hospital all the time. Well in Aug of 2005 they started me on dialysis right away doing 3x a wk. for 3/hrs at a shot. I was also working a 40/hr work wk on top of dialysis was very difficult to juggle dialysis, work & dating, etc. Till this day I'm still with the same guy, we got married at the end of 09. Then around may I was feeling sick & just couldn't get over this stomach bug, so I went to the doctor & she was surprised at how long I had this bug so she does a pregnancy test & OMG she calls me the next day to say surprise your pregnant!!!! To be pregnant on dialysis is like finding a needle in a hay stack, EXTREMELY rare! Theres a 1% chance to become prego while on dialysis I was told! The doctors were very unsure what would happen to the baby & I but I was determined to make it work for both of us!! The second I became prego my dialysis changed to everyday at 3/hrs a day & OBGYN apts every week. It was a full time job keeping that baby safe! By week 20 of the preg. I was on bed rest in the hospital & by week 26th I hit preclampsia & my son was born the next day. 2.4 lbs & 3/mths premature but he was my perfect little boy! He was in the NICU for 4 mths before we were allowed to bring him home. I hated leaving the hospital with him there!!! 4 mths later we brought him home but he came home with oxygen & feeding tube. Now my son is a healthy 1.5/ yrs old & you would never know he had complications at birth. So between dealing with my health & his health I should have became a nurse I have learned so so much along the way! I am still currently on dialysis awaiting my 2nd kidney. My antibodies are at 99% so its making it extremely hard but I am currently on the waiting list as well at the swap exchange list too. I have been waiting for almost 7 yrs for a kidney to come along & all my friends & family have been tested. Now I'm a stay at home mom & love spending every minute with my son.
There had been a lot more to my story but I was trying to keep it semi short. I have been through so much more but this is about the sum of everything!
I always try to keep my chin up & look on the bright side of things & want to try & help other people who might be going through similar situations 

Marna

[smcd23]

Welcome Marna! The circumstances in which you found us are awful, but I'm so happy another young person joined us! I'm 29 and caregiver to my husband who is 27 and on dialysis after his most recent attempt at transplant in June rejected. That was his 2nd time at the fair, as he clotted my donated kidney within hours in 2008. We also have a 2.5 year old son. He's always told by the folks at the clinic he's too young, and doctors have said he's one of the youngest patients they've seen. Its nice to come here and talk to people who are closer in age.

Have any of your doctors suggested plasmapheresis to reduce antibodies? If you had a living donor I know there are a bunch of facilities on the East coast who have sensitized patient programs.

I hope you find this site helpful and share you experiences as well. It really has become my 2nd (and generally more supportive) family.

[MommyChick]

Thanks smcd23 !!
Yes, they have done the plasmapheresis several times & there wern't any changes, now that was back in 05 when the kidney started failing. Now with my high antibodies at 99% & having tons of blood transfusions while prego & others threw the years to help my anemia its just making it very hard!!
Normally I tolerate dialysis very well but lately it seems like it makes me feel weak after wards, so I don't know if my body is just getting tired of all this crap or what. Haha & then I come home to a 1.5 year old
I have actually been lucky & haven't been in the hospital since my pregnancy, so I keep my fingers crossed that I continue to stay healthy like I am !!!
I've been in & out of that hospital so much over the years that I always teach the doctors & nurses a thing or two when I'm in there, I feel like I seem to know more then they do at times, LOL

[lainiepop]

Hi Marna! I'm 30 & a stay at home mum too! I was born with only one imperfect kidney so have had this all my life. I've been married 7 yrs & have a little boy who will be 5 in October (got to 39wks with him then had pre eclampsia after delivery) & a baby girl who tvrned 1 two wks ago. She was 5wks early weighed only 3lbs12 is only 16lbs how lol. She finished my Kidney off, I had one from My dad almost 7 wks ago!

Nice to meet a fellow mummy similar age

Marie X

[MommyChick]

Hi Marie !
I love meeting new people around my age dealing w/ same situations. I'm the youngest at my dialysis unit so it's hard to relate at times especially when some are so miserable.
I had gone into preclampsia too with my son & this November I'll be married 3 yrs
Glad you got or kidney, your so lucky my antibodies are so high I don't know if I'll ever find a 2nd one, gets so frustrating at times. Thanks for saying hello

Marna 

[smcd23]

I had borderline pre eclampsia within my son, they attributed it to me only having my right kidney left, and we got pregnant really fast so it only had about 4 months to adjust to being solo. Had my son at 39w1d because he was big enough (almost 8lbs) and they didnt want to risk damaging my kidney if I went naturally. As far as I know everything was fine the year after when I went for my physical so I think everything went okay and recovered fine.

My husband is the youngest at his center by like 20 years. That's why he had switched to PD. he said he felt like he was walking into deaths waiting room and it really depressed him. He's in center again now, not sure if they are going to let him do PD again

[MommyChick]

Yeah I can relate to the clinic part, Im in the same boat as your hubby. everyone there is so old & some are so miserable & I cant tell you how many people have passed away since I started in 2005. although I do know some of those older people love me, haha I think they like having a younger face & Oo but also all the dialysis nurses & techs are my age! So that helps me But I can totally relate to your hubby in that situation. I never wanted to go on PD had bad infections with catheters & I would get so so sick, & since my fistula I havnt really had to many problems with it . ( keeping my fingers crossed)

[cassandra]

Welcome to the site Marna

take care Cas

[willowtreewren]

HI, Marna!

 

What a story! I think your guy is definitely a keeper! 

I'm sorry you needed to find us, but glad you did.

Aleta

[KAF454]

Welcome to the sandbox, MommyChick. Your life story and determination to beat the odds will be an inspiration to folks who find their way here.

[Lillupie]

ME TOOO!!
 Whoo hoo someone else my age.
 I too am 29 years old. There are a few other people our age here. I too have a child, which caused me to rush onto dialysis. I was diagnosed with lupus at 16, that attacked my kidneys. When I had my daughter at 23, I had to start dialysis at a month before I turned 25. I have in been on dialysis since October 2007. I do PD. My antibodies are quite high as well. I found out lupus could of caused higher antibodies. Mine are about 70-80%, and Im O+. I have had 4 blood transfusions, 2 pregnancies, and an infection.
 My daughter is 6 years old and I just got married in December. I dont know where you live, but you can list in various states. That is what I am trying to do.  My husband is in the military and Im trying to get listed in the nearby states.

keep in touch! Lisa

[MommyChick]

Hi Lisa, 
YAY!! I love meeting other people my age going through similar situations
I actually live in PA. I have thought about registering in other states but with how things are going & my antibodies I don't think it would be much help, just a lot of traveling. I am also on the swap program & I do still have people wanting to test for me, so I just wait & see.
I do hemodialysis, been doing it since Aug 2005. I originally had catheters but after 2 getting very infected & making me extremely sick, I went to the fistula.  I hate my fistula because of how ugly it is but its keeping me alive!!
It also works VERY well! Yeah, higher antibodies suck!!! Mine are at 99% & even plasmaphoresis didn't seem to help them. I have probably had 30+ transfusions just to save my life. especially when I was pregnant I was constantly having to get them done. It was crazy! I did just have a meeting with my transplant team I seem to always be there topic at there meetings, lol.. but they said they were going to see what other solutions they might be able to do for me since I'm at the top of the waiting list & have such high antibodies. So I wait & see what will happen.
Definitely keep in touch

~Marna

[Poppylicious]

  Marna!

[MommyChick]

Good News...

Well today my mom finally got a call saying that all the testing she was having done to be on the paired donor exchange for me will be finalized on Thursday!!! My coordinator was VERY HAPPY about this!!!
Even though my antibodies are at 99% I am hoping that God will find a kidney for me this way since waiting on the donor list for 7 yrs has come up empty handed & friends & family are no longer matches for me this 2nd time around searching for a kidney, due to my antibodies.
Wish me Luck 

[lainiepop]

Good I luck hoping it all works out! x

[cassandra]

Good luck my darling

love Cas

[Rain]

Hey Marna,

I'm 28 years old and have been on dialysis for 5 years but have had kidney problems since I was 4 years old and they finally stabalized at  13% until 23. 

[MommyChick]

Hey Marna,

Hi Rain,
I'm 28 years old and have been on dialysis for 5 years but have had kidney problems since I was 4 years old and they finally stabalized at  13% until 23.

I'm always glad to meet other people around my age! I'm the youngest patient at my clinic.
If you ever want to chat, feel free to message me.

~ Marna 

[okarol]

 

Best wishes that all goes forward. Paired exchange programs really can make the difference between a transplant or not for highly sensitized patients. Good luck! 

[MommyChick]

Thank you all !!

[MooseMom]

I was 29 about 2 years (decades) ago.   I may be old, but I'm very glad you've joined.

[MommyChick]

A Little Update On Myself .........

OK, So it has been 7 yrs I have been on dialysis waiting for that Important Call, so far I have had no luck.. not even a single phone call! (been on the deceased donor & paired donor programs)
I'm starting to get very frustrated !!!

I have been overly patient & it wouldn't bother me as much... but my dialysis the last few months haven't been going well & I'm getting tired of my BP almost bottoming out at EVERY treatment! I'm in-center which I don't mind, I do 3 hr treatments 3x a week. This week was slightly better but still after every treatment my BP drops pretty fast! I've been trying all the tricks in the book & I'm even currently trying to register out of state on a donor list as well b/c I don't know what else to do!
I hate to change my dialysis or access b/c my fistula works wonderful & I'm still on my first fistula after all these years.

Guess I'm just frustrated & venting... because I have been through so much & part of me is worried that if I don't do something I'll end up in the hospital or something worse might happen!
Thanks for listening!

[Lillupie]

A Little Update On Myself .........

OK, So it has been 7 yrs I have been on dialysis waiting for that Important Call, so far I have had no luck.. not even a single phone call! (been on the deceased donor & paired donor programs)
I'm starting to get very frustrated !!!

I have been overly patient & it wouldn't bother me as much... but my dialysis the last few months haven't been going well & I'm getting tired of my BP almost bottoming out at EVERY treatment! I'm in-center which I don't mind, I do 3 hr treatments 3x a week. This week was slightly better but still after every treatment my BP drops pretty fast! I've been trying all the tricks in the book & I'm even currently trying to register out of state on a donor list as well b/c I don't know what else to do!
I hate to change my dialysis or access b/c my fistula works wonderful & I'm still on my first fistula after all these years.

Guess I'm just frustrated & venting... because I have been through so much & part of me is worried that if I don't do something I'll end up in the hospital or something worse might happen!
Thanks for listening!

I am wondering if they are taking too much fluid off and that is why you are bottoming out. Im sorry to hear about your pb issues. If your fistula is working good, dont change accesses.
 I hope a donor comes along for you, as well as for myself.

Lisa

[MommyChick]

[/quote]

I am wondering if they are taking too much fluid off and that is why you are bottoming out. Im sorry to hear about your pb issues. If your fistula is working good, dont change accesses.
 I hope a donor comes along for you, as well as for myself.

Lisa
[/quote]
I dont think its the fluid.. they have upped my dry weight & that didn't help & one day they can take a bunch of fluid off me & the next they barley can get 1kg off. I've had my sodium changed & a few other numbers b/c I can tell when there is fluid on me b/cI've been doing this for so long. Normally my BP drops around the 2 hr mark which sucks b/c I'm to be on the machine for 3 hrs. This week was slightly better but still every treatment my BP drops still!
Is it possible for my body to get sick of dialysis & react weird? haha maybe that's a really stupid question!
I hope you get a kidney too!! I hope everyone here gets a kidney b/c this is no fun!!!

[noahvale]

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