I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: vandie on February 03, 2009, 11:21:11 AM
-
I work with a woman whose name is Kim. She has twin daughters who are 11 years old. The girls' names are Tiffany and Taylor. Both Tiffany and Taylor have Lupus, two different kinds, forgive me for not knowing Lupus well enough to recall the names of each.
Tiffany was diagnosed about 18 months ago and underwent chemo and a plethora of drugs, including high doses of prednisone. She finally was able to go back to school with occasional bouts of pain. In November of last year, Taylor was diagnosed as well.
On 1/26/09 Tiffany was hospitalized with kidney failure. They dialyzed her once and gave her huge doses of prednisone hoping that it would bring her kidneys back in check. Unfortunately, this did not work and she has been doing dialysis every other day for the last week. She will have surgery to place a fistula soon. She is still in the hospital but out of ICU. Kim is hopeful that they will get to come home soon and do outpatient treatments at Loma Linda, which is the closest hospital that does pediatric dialysis. Loma Linda is an hour-and-a-half from Kim's home and almost two-and-a-half hours from where we work.
If anyone has any insight that I can share with Kim, please let me know. Dealing with this disease as an adult is tough enough, but being a child -- well, I can't fathom it at all.
Please keep my friend and her precious girls in your thoughts and in your prayers.
-
:grouphug; vandie, that is so heartbreaking. My thoughts and prayers to the family. :cuddle;
-
:grouphug; I am so sorry to hear that it is hard to accept it as an Adult but to see a child have to go through it is terrible.
-
No insight but i have plenty of prayers i can send along.
And i so agree. When it is a child it is heartbreaking.
-
Prayers and love to Tiffany and her family :grouphug;
-
nobody, especially a child, should have to go through dialysis and all that comes with it; that is such a heartbreaking story and my thoughts are with Tiffany and her family.
-
:grouphug; for your friend.
Vandie, a comment on the practicalities - the 1 1/2 hrs and 2 1/2 hrs are going to be difficult to deal with. Are there home dialysis modalities available to a pediatric dialysis patient and her parents?) Or even night in-center (probably not in an outpatient hospital setting? Best wishes to the family, so difficult for anyone, especially a child.
Alene
-
:grouphug; My prayers are with the family.
-
I PMed you. Let me know what things she likes, what books she reads, what colors, etc. The foundation I belong to may have a way to get a gift basket to her. Does she or her mother need anything right now?
-
I'm so sorry that this family is having to deal with this. My thoughts are with them. :grouphug;
-
if offer lots of prayers for Tiffany and Taylor and their mother. :grouphug; :grouphug; :grouphug;
love,
cris
-
sounds very difficult for this girl and her family :grouphug;
-
What about doing PD? Children are able to do it. This might help--http://kidney.niddk.nih.gov/Kudiseases/pubs/childkidneydiseases/treatment_methods/index.htm#2. There is info on the page about PD for kids.
I will keep her in my thoughts and prayers. It must be extra rough as a child. :cuddle; :cuddle; :cuddle;
-
:grouphug;
-
So tragic. Please let me know if I can help, I am happy to - anything. :cuddle;
-
Tiffany is having surgery today at Loma Linda to install a permacath. This little girl has been through so much already. Thank you for the thoughts. And thanks Kit for the attempt at a basket. The thought alone is lovely.
Alene, as soon as things calm down, I will sit with Kim and discuss the other options. She's overwhelmed and I'm trying to let her absorb all of this BS that is kidney disease.
xoxo
-
You are a good friend, Vandie and you will be a great help to this family. It is so hard to think of children having to go through this. I'll be saying lots of prayers for the whole family. If you find out any special needs they have, post them and I bet we could all help. Hugs for you and for your friend. :cuddle;
-
:grouphug;
Lots of love and wishes to the girls and Kim
What a wonderful supporting friend you are
Good on ya mate
-
If it is any comfort, Loma Linda is probably a great transplant center and kids are listed first. I hope and pray things settle down for this family.
:grouphug;
-
This really is heartwrenching that Tiffany would have to deal with this at this age. However, children can sometimes prove to be more resilient than us grown-ups. I do hope she is able to find some special strength to help her through all of this. Our caring thoughts and prayers are with her. Please let her know that there is an international family rooting for her. :grouphug;
-
I am cooking up something special for those girls. Anyone want to help?
-
What are you up to kitkatz?
-
I am cooking up something special for those girls. Anyone want to help?
Let me know what you have in mind. I will help if I can.
-
An update on Tiffany and Taylor:
Tiffany is having dialysis at Children's in San Diego three times a week. She's feeling like crap and they are contemplating changing her status from acute to chronic. . . . .:o/
She isn't ready to talk about a transplant yet. She's one scared little girl. Her creatinine hovers around 5. Here mom is just trying to keep things balanced. Again, she is one of the strongest women I know.
Taylor is still unable to go to school. Both of the girls are hanging in there and are troopers. Please send your positive thoughts to the family.
Also, if we have a member with a child around the age of 12 that is battling with illness, I know the girls would love to have a buddy who understands what they are going through. PM me if you do.
Thank you Kitkat for putting together a basket of goodies for the girls. You are amazing. xoxo
-
TeenHatesDialysis's daughter Jaclyn is 14. I bet her daughter would be thrilled to have someone her age to talk to about this!
I'm sorry she is having such a rough time. I'll keep her in my thoughts and prayers. :grouphug;
-
Thats pretty tough on those poor girls, I will keep them in my prayers.
-
Another update on Tiffany:
Tiffany was hospitalized this morning. Her BP is in the 170's and she has a bacterial infection. She can't keep anything down and is having severe headaches. She will be at Children's through the week and will dialyze every day.
DAMN IT!
-
OMG - vandie! Thanks for the update. How can I help?
-
OMG - vandie! Thanks for the update. How can I help?
Just good thoughts for both the girls and Kim. I think I am meeting up with Katherine this weekend. She has a basket for the girls. You available? I would love to see you too!
xoxo
-
Which day?
-
:grouphug; Sending hugs from down here.
-
Another update on Tiffany:
Tiffany was hospitalized this morning. Her BP is in the 170's and she has a bacterial infection. She can't keep anything down and is having severe headaches. She will be at Children's through the week and will dialyze every day.
DAMN IT!
Oh no! I wish there was more I could do. All I can do is pray.
-
Which day?
I need to speak with Kit. I will let you know as soon as I do.
-
Karol and Vandie, Saturday works best for me as I have the gym on Sunday. I even have some small things for their Mama. Got to go get gift bags today.
-
Karol and Vandie, Saturday works best for me as I have the gym on Sunday. I even have some small things for their Mama. Got to go get gift bags today.
That will be great. I will pm you on Friday and we will figure out a spot halfway. Thanks again.
Karol, If you can't make it, we will get together soon.
xoxo
-
Sending love and many prayers. :grouphug;
-
I have pretty full gift bags now.
-
Sending love and prayers, that's all I can do from this distance :grouphug;
-
You guys are the best. My prayers to out to the girls and their Mom.
Drive safe.....
:thumbup;
-
Just thinking of the girls Vandie. :grouphug;
How are they going?
-
Thinking of, and praying for these two young ladies!...
May God bless and protect them both... :cuddle;
Love...
Darth....
-
No Child should ever have to go though any of this, its makes everything we have been though seem like a cake walk. My prayers go out to These two young girls and the family.
-
Tiffany got to come home today. WOOHOO!!
Thank you Kit, for the goody bags. My trunk is full of gifts for the girls and their mom, and I can't wait to drop all of it off to them this week.
Thank you all for the prayers and positive thoughts. This place has always been and continues to be a positive light.
Much love to you all.
D'Anne
-
The red and blue bags were for the girls.
The little bag is for Mama
The Hallmark bag is the DVD player and headphones for the family.
Kit
-
Tiffany is back in ICU. She had a seizure on Monday because her BP has been so out of control.
-
Sorry to hear that. I will keep her in my prayers.
-
:grouphug;
-
Vandie - how is Tiffany doing? :grouphug;
-
It is recognized that stress is a trigger for Lupus flare-ups, particularly in adolescence after the onset of puberty. My first kidney failure was at 17 and a half years old and this happened after a build-up over several years of great stress. Similarly stress preceded many flare-ups including the current kidney failure I am now suffering (I was very lucky to regain some kidney function after my first kidney failure). Of course, there are other reasons which might cause a Lupus-flare (e.g. medicines) so it is always difficult to identify the cause of a flare-up, but stress is definitely a major trigger, and as kidney failure is one of the major Achilles Heels of Lupus sufferers, stress is something we must think about. How to avoids stress in this day and age is almost impossible to figure out but if one can find ways of avoiding stress it is obviously beneficial. Like everyone else, I too, feel very sad to read the story of this unfortunate family and I wish them all the best.
-
Tiffany was able to go home today. They think they found a BP patch that is working. . . crossing fingers
Thank you all for the good wishes. I know Kim and the girls appreciate you as much as I do.
xoxo
-
:grouphug; :grouphug; :grouphug;
-
I hope she feels better and can get back to just being a kid. :grouphug;
-
I am sending good thoughts and prayers their way <3 Those goodie bags will hopefully brighten their days a little!
-
Sending my thoughts and prayers.