View Full Version : How does your life turn upside down in 12 days

Xandra's Mom
01-25-2011, 07:19 PM
On January 14th my life forever changed. My daughter, Alexandra was hospitalized and later diagnosed with Systemic Lupus Erythematosus. I'm so overwhelmed by everything that has happened in the last two weeks that I don't even know how to process everything.

We took her to the doctor because we thought she had the flu. We found out the next day that her kidney was only functioning at 25% and that she was extremely anemic. In the hospital, her kidney function went down to 20%, she had blood in her lungs, a leaky heart valve, fluid around her heart and arthritus. She was released from Children's yesterday and all she does is cry, because she is so afraid that she is going to die. 3 weeks ago I had a larger than life 16 year old.

I could really use some advise from parents of a teen with SLE. I just want to make sure that I do everything that I can to help her.


01-25-2011, 09:08 PM

Welcome to WHL. I'm so sorry that you've had to find us, but you've found one of the best forums for support. Unfortunately, I am not the authority on everything related to SLE, but I'm sure that Saysusie, the founder of WHL, will come along and offer some words of encouragement as she has experienced parenting a child with SLE as well as having it herself.

There are informative sticky notes that provide some great information. I literally spent hours reading when I first found this website and still asked a lot of questions. Please don't hesitate to post your questions as someone will surely be able to help you out.

Merrilyn OZ
01-26-2011, 05:35 AM
Hi Xandras Mum,
I know this is a terrifying situation. I was your daughter 40 years ago
I was 17 when I became ill with pleurisy then pericarditis(fluid round the heart)raynards and anemia and later found to have some kidney impairment.
I thought I was dying too. To a 17year old a heart condition seems like a death sentance.
My mother spent many hours seeking advise and help for me, at that stage no other cases were known in NZ where I come from originally.It took over 2 years for a diagnosis and by that stage I had severe arthritis as well. I was put onto prenisolone Vitamins & mineral and calcium.Like your daughter I had been a larger than life normal teen into athletics involved in Girls Brigade( a youth group) and just about to spend time in the Pacific Islands as a volunteer leader when my world came crashing down. I suffered various relapses now know as flares which required medications adjustments. My world settled down to a new norm for me unfortunatley athletics were out but a went on to lead a normal life working in a laboratory and then becoming a Vet nurse. When I got married to my high school sweetheart we were told we could'nt have children how ever by the time we got round to adoption medical knowledge had improved and I was able to have a son ( very prem but very alive) We adopted a daughter several years later and I have been lucky enough to lead a fulfilling life. and now have 6 grandchildren to spoil.
If you would like to ask me any questions or just chat let me know.
My thoughts are with you all as you come to terms with what has been a real shock, tell your daughter stay strong and stay close to her freinds. Read the Spoon story not sure of the web site but I'm sure tgal could help out there.
Lots of hugs and warm thoughts

Angel Oliver
01-26-2011, 07:31 AM
I am so sorry to hear about your daughter and how scarey everything is.But just know members here will help always.Thinking of you both

Love n gentle hugs

01-26-2011, 08:21 AM
Wow Natalie, I'm sorry that you and your daughter are going through these difficult moments. As bonusmom said, this is one of the best places to be for support. Here you can come and vent and we will all understand what you and your daughter are going through as well as to try to learn as much about it as you can to help her live her life to the fullest! Hugs being sent your way!

01-26-2011, 09:17 AM
I am so sorry to hear that you are going through this. I know there is nothing harder then watching your daughter be ill. I am the ill one in my home but my daughter has some issues and is being monitored by a rheumy although nothing like what you are going through. I know it is hard but please let your daughter know that Lupus is no longer a death sentence. While there is no cure there are meds that can fix the symptoms and help her live a pretty normal life.

Merrilyn gave you some wonderful information and Say Susie will be along later with more information on the medical side. Please know that we are here for you as you travel down this path with your daughter.

Xandra's Mom
01-29-2011, 08:50 AM
Merrilyn, Thank you for the words of encouragement. I know that Xandra will be able to live a fairly normal life with a few limitations and I'm thankful and encouraged, by hearing your story. :) I've become this over protective mother hen over the last few weeks. It's amazing how you can be a very easy tempered person one day and become a fire eating dragon, when your child is sick and you're trying to get help. I had to sit there and watch my daughter's body continue to shut down for 5 days and there was nothing that I could do about it. I felt so helpless. Now she makes progress every day as the medication makes her stronger. The beauty of it, is that she doesn't even complain about it. We take each problem as it comes and deal with it and move on to the next. That child's strength is simply amazing. She was always the big teddybear of the three and now I realize that she is the strongest. She's the baby and was treated by all as such. Not that she minds. She loves being the baby. I secretly think she's loving all this attention that she is getting from her older siblings. :) Anyway, I continue to learn everything that I can about SLE and if there is any websites or books that have informtion about it that you could recommend, it would be greatly appreciated.

Take care and thank you for sharing with me.


01-29-2011, 05:36 PM
I feel for what you are going through as a mother. I raised five kids. The fourth one, Kayla, had severe asthma and some kidney problems that made her eventually lose one kidney. She had her bad days, when she would get very, very angry about her limitations and she would usually take that anger out on me. We had a rocky relationship for a while.
Now that she's the mother of a child with asthma, she understands why I was being so protective of her. (I also worried all the way through her pregnancy, with that single kidney)
It sounds like Xandra has a sweet temperament, but be prepared for days when she might feel angry or discouraged.
You might want to put her in touch with some of the young ladies here at WHL.
Feel free to come back to vent when you need it, too.