Hello! I am the mom of teen daughter on dialysis

[TeenHatesDialysis]

Hey all   ,

I wish I had found this site years ago! My youngest daughter, 14 years old, started dialysis Jan 2, 2008. She is going on 14 months and hates it, but realizes that it is better than the alternative. I have another daughter, 18 years old, who was diagnosed with the same kidney condition, NPHP (type 1), a recessive genetic condition apparently caused by deleted/mutated genes, which causes kidneys to fail between the ages of 13 and 19. My 18 year old currently has a creatinine level of 4.2 and is convinced that the docs are wrong and she will never need dialysis or a transplant. We currently live in Colorado, but they have both been listed at Lucile Packard Childrens Hospital at Stanford, Palo Alto, CA. due to their non-steroid protocol. My youngest daughter has a website where we, more me than her, blog her journey to get a new kidney, www.cotaforjaclynp.com. 

I have read many of the posts and have already learned so much.   

Susan, mom of Jaclyn (14- on dialysis), Deziree (18- in denial) and Valerie (healthy kidneys - would love to donate but A/B blood type)

[Rerun]

Susan, I'm glad you found us.  This site is a place to vent yet a place to learn how to handle things and what to expect if you are traveling down the dialysis or transplant road for the first time.

                        

[Chris]

Hi there
I'm sure okarol will have some useful help topics or suggestions for you.

[willieandwinnie]

Susan. We are glad you found us. Great group aren't we? You should also have your daughters join so they will know they aren't alone. Please post post often and I'm going to check out your web site. 

Beautiful girls. 

[monrein]

   Susan, glad you found us but so sorry about your daughters' illness.  Post often and it would be great if the girls looked in from time to time too.

[RichardMEL]

G'day Susan and welcome!!!

Gee, how difficult is it to have two teen daughters potentially both needing dialysis and transplant and one already there. Jac is a beautiful young woman and deserves to get the most out of life she can - certainly hoping she can get there. I wonder if next year it might be possible to get her to the RSN Renal Teen Prom they do - that might be cool. I know you're in CO, but it's not too far from CA where they hold them. Go CU Boulder (where I've been) and DU !!

Now, if you can just connect me up with those gals at Phi Mu that would be awesome!!!   

 

[Run8]

Hello Susan welcome I am glad to meet you. So sorry this is happening to your two young girls. Have you looked into listing at multiple hospitals. The university of Colorado hospital in Denver is a great place and the transplant team is awesome. Right next to it is a childrena hospital. Post often I think we can all learn from each other. Take care.

[okarol]

Hi Susan.
I am having internet connection problems so will make this note short for now. Welcome to IHD - you are in the best place for support. My daughter started dialysis as a senior in high school, got a transplant at 21 and doing great 2 years later. I will write more when I can, but there are many wonderful people who can be helpful here. Nice to have you join us!

okarol/admin

[Sluff]

Welcome to ihatedialysis.com Susan,

Sounds like you have your hands full. I'm happy you found us because simply having a like minded and experienced support group, is essential to being able to deal with ESRD. Hopefully your oldest will come to terms with her stage of this disease and we will see her join IHD also. I wish you the best and hope to see you around the site. Post as often as you want and don't be afraid to ask questions.

Sluff/Admin

[Joe Paul]

Welcome Susan, good to have you aboard.

[boxman55]

Welcome to IHD. It has to be tough to deal with. Hang in there and know that you have found friends here.

Boxman,Moderator

[Tinah1968]

  I am sorry to hear that you have to be going through this. We have all been in Denial and once you understand the consequences it all changes. Good Luck and we are always here.

[TeenHatesDialysis]

Thank you everyone for making me feel so welcome 

OKarol --
  I have read Jenna's story on caringbridge and I am so happy to hear that she is doing well. She is beautiful. Patrice is definitely an earth angel. It is amazing that she ran a marathon so soon after donating her kidney. Go Patrice    We live in Colorado, but my husband is in Irvine, CA 50% of the time for business. I grew up in the Bay Area, but lived in Mission Viejo for a bit. We get out to La Jolla occassionally as I have a younger sister that lives in So. CA. My girls and I would love to meet up with you and Jenna sometime. There are so few teenage girls that go through this that I feel we already have a great deal in common.

Run8 --
  Since Jaclyn is only 14 years old she can only be treated by Pediatric Nephrologists.  Therefore, Childrens Hospital in Aurora is our only option for dialysis. She is not a good candidate for PD. A couple of years ago, when I found out that Jaclyn would need dialysis, I started checking the dialysis centers close to home.  I found out quickly that Childrens Hospital in Aurora (previously Denver), CO is the only place that performs dialysis for individuals under 18 years old in an 8 state region. Jaclyn's school schedule had to endure some major adjustments for the 45 minute commute each way 3x per week with 4 1/2 hours in the dialysis unit.......BUT, I am not going to complain. I have seen families move from Wyoming and Kansas to get dialysis for their child, thinking it would be for 3 months and 3 years later....(I think everyone here knows the story).
  We chose Lucile Packard Childrens Hospital @ Stanford several years ago for the actual kidney transplant due to their non-steroid protocol.  Apparently, teenage girls experience a high percentage of kidney rejection because they don't take their steroid meds due to the side effects....and another reason for pursuing a hospital other than Childrens in Colorado is that our insurance pays for dialysis at Childrens, but will not cover a kidney transplant at Childrens Hospital in Colorado.

Richard MEL --
Great to have a friend on board from CU & DU. I am a CU graduate, DU dropout. My daughter, Val, is on the CU Cheer Team so I get free tickets to the games (totally worth the cost of tuition ) The girls at Phi Mu are awesome, very beautiful and definitely earth angels. Sorry, I don't know any of them personally to make a love connection for you.

Thanks again for all of the support.
Peace, love, happiness and kidneys to all.
Susan

[David13]

So glad to see you here, Susan! 

You seem as though you are quite well informed, but there is a great deal of information on this site that you won't get anywhere else.  The best part is that it is from people who have been there. 

You will find a great deal of support here as well.

Welcome!   

[kellyt]

Your older daughter sounds a lot like the way I felt.  Even as my creatinine rose I never really got "sick".  But even though I wasn't "sick" I knew I was "sick".  Hopefully, as she learns more she will come to realize that when the time comes for one or the other, it is in her best interest to just do it.      Hugs to you and your daughters.  It's a tough road.

[Romona]

 

[pelagia]

 

[paddbear0000]

Welcome! You have come to the most informative site for kidney patients on the internet (and the friendliest)! Your daughters should really check us out. We are a great "support group". I've been a member for well over a year, but just started dialysis last week. because of IHD, I was fully prepared for and was not afraid of what I had to face.

Do you know what your older daughter's % of function is?  It's different for everyone, but when my creat was 5.5, my function was down to 9% and I was feeling terrible. I don't want to scare her, but from the sounds of it, she should really think about getting a fistula placed sooner rather than later. My doctors kept putting it off, and now I have to deal with a chest catheter. I hate it (not everyone does though)!

[Dan.Larrabee]

 

[RichardMEL]

lol just to clarify I've never been to CU or DU as a student (I live 10,000 miles away!) but I have visited both in connection with visiting friends (once in Boulder) and another time for a young lady I was smitten with in Denver (she was at DU)...

save the cheerleader's kidney - save the world!!! 

[TeenHatesDialysis]

Thanks again for all of your support.  I think that this is the group hug that I've needed for the past several years 

kellyt -
My 18 year old daughter's creatinine is 4.2 and kidney function is 20%. She goes 24/7! She is on a competitive high school cheer team, just returned from 5 days in Florida. She had a major role in the school play, performed in the school musical, takes advanced placements classes, spent 2 weeks in Europe. She does take a shot of Epogen weekly. I think it turns her into super woman.  The docs say that since her kidney function has deteriorated slowly overtime that she thinks feeling crappy is normal. Two years ago, her creatinine was 3.3 and Jaclyn's (little sis) was 2.2..............by the end of the year, Jaclyn's was 4.2 and Deziree was only at 3.6. Deziree has been accepted to CSU (Colorado State University) in the fall. As long as she feels well and she is in the big "D"enial then I think she should go to CSU. It is only an hour away and I think that I will be picking her up monthly for Nephrologist appointments. If she gets sick in the middle of the semester, she can take a medical "Incomplete" on her classes and finish them at a later time. This is the plan. Any input is greatly appreciated. She is a fighter  How is your new kidney life?? Congrats 


Paddbear0000 -
I would love it if my daughters would check out this great "support group", but Denial Deziree is certain that nothing here applies to her. Jaclyn has been on dialysis for just about 14 months and the LAST THING she wants to discuss is dialysis. For now, you'll have to put up with me begging for advice and support.  I have gained so much knowledge just reading the blogs. Just yesterday, I asked the dialysis nurse what Jaclyn's URR was and let them know that if it wasn't at least 65% that they better do something to improve clearing the toxins out of my baby's blood. Jaclyn is on her second chest cathedar. The first was put in wrong  , but the second has lasted almost a year. She does not want a fistula.  How is dialysis going for you? Do you feel a little better now that you have been on dialysis for a bit? Jaclyn is always WIPED OUT right after dialysis, but feels good on non-dialysis days and prior to dialysis on dialysis days (M/W/F).  I hope that you are doing well on dialysis. Thank you for thinking of my daughters.

Thanks again for the support.  I am off to search for any advice about sleep and depression issues. Jaclyn does not sleep at night and she is beginning to get very depressed since she has been on dialysis 14 months and several donors have been rejected, but a couple still being tested Also researching crossmatching..... donor can have a different blood type??? - not sure (I am A, Jaclyn is B)......Off to find some answers.

Love, Peace and one healthy kidney per person. - Dialysis SUCKS!

[paddbear0000]

Just keep in mind that her function may not always take that steady and slow creep downwards. My function did that slow creep as well for a few years, then remained the same for about 2 years and all of a sudden, in the last month, tookk a nosedive from 17% to 8%. i didn't even have an access in. I know everyone is different, but it is always a possibility.

Jaclyn's dialysis experiences sound just like mine. So far, I've been very tired for the rest of the day after dialysis, but better the next day. I have been getting massive headaches though afterward that last the rest of the day. They aren't from taking too much fluid off though because I still have fluid on me (we're still trying to find my dry weight). Tylenol does nothing for them either. I have been noticing a slight improvement during my non-dialysis days! Yay!

[RichardMEL]

Susan, I think you are talking ABO incompatable transplantation, which more and more places are doing. Our own Tamara comes to mind who had one from her fiancee over a year ago, and she's doing very well!!! (speak up, T!).

I can't offer much for the lack of sleep and depression other than a lack of sleep can't help a teenager!!! It is so frustrating when donors are knocked back (I've had two) and you wonder how long you have to endure this crap and whenever will life possibly be more normal? Is she on the cadaveric transplant list? If so it's best to remind her that THAT CALL could come any day - and probably when she least expects it (like when she's on a hot date!!!  ). Seriously though it is difficult to deal with at some times and depression is normal.. but given teenagers of any sort can face depression I'd recommend you get a referal for her to see someone about it to try and help her deal.

All I can add is that if I were her I'd be totally stoked that I had SO MANY people rooting for me from my loving family(specially mother!) and all those cheer teams and hot sorority girls (*grin*) and everyone who has raised money and donated for that transplant. She obviously has so many people on her side and that would be really uplifting I feel.

And now she (and you) have the IHD family on your sides. You can't lose now!!!! The only forward is up!

 

[pelagia]

Jaclyn is on her second chest cathedar. The first was put in wrong  , but the second has lasted almost a year. She does not want a fistula. 

I think I've read here on IHD that catheters make it difficult to get good clearance of blood relative to fistulas or grafts because the blood flow is more limited.  My husband had a catheter while he was on dialysis, which I thought was a plus because it was making the treatment easier for him, but I didn't realize at the time that it meant his dialysis was less efficient. 

I can't imagine how hard it must be to mother your daughters through this process.  I'm glad you found IHD. 

[Ang]