For the past week, my neice is in critical condition. She has lupus and seizures along with it.
Her kidneys and her bowels have now shut down. Doctors are scrambling to save her life.
I didnt realise that a major flare of lupus could lead to so many serious life and death situations.
Only two years ago she was so healthy (or it appeared so) and now we are afraid of losing her.
I am so sorry. Will be keeping her in my thoughts, keep us posted.
How horrible and scary for all of you : ( I didn't know flares could get so out of hand either. My thoughts and prayers are with you all.
Lupus has a quite high mortality rate if not treated with the new medications. Back in the 60's when I was in nurses training a lupus diagnosis brought an almost certain death sentence.
The death rate from lupus has been cut way down because of all the medications that are available nowdays. The first thing is to get diagnosed and the second thing is to be treated with medications like imuran, cellcept, etc. Also, plaquenil can be used along with these meds plus the steroids are very necessary.
I know that a lot of people on this site think that I can be hard core about a lot of things, but because of my nursing experience I am well aware of the dangers that are hovering in the background when these autoimmune diseases are not treated full bore.
We can go along thinking that all is well and in the snap of a finger we can find ourself at deaths door. Autoimmune can be a relentless taskmaster and when the docs are not willing to treat things it just drives me nuts. So many times the sjogrens can all of a sudden be called lupus. These diseases are hard to diagnose and it takes both the patient and the doctors to keep ahead of things.
When people refuse to have treatment it drives me crazy because I have not been able to take the imuran. For over 5 years my doc has not given me imuran as he is afraid it will cause me to have a life threatening infection because of my low t-cells.
Now he wants to start with a low dose imuran and plenty of blood work to keep track of infections. I think that he feels my autoimmune is starting to get worse. This only makes sense as I am getting older. When we get older our immune systems become less productive and it stands to reason that our autoimmune disease can escalate out of control. Anyway, I will see what will be done in the next months.
Season, I am so sorry that your niece is in such bad shape. I will pray that all the meds do their work and kick start her body again. So sad, so sad. Irish
Oh Season, On top of your own problems, how unfair life can get!
I send my best wishes that your neice can fight through this. God be merciful!
Dolly x
Season, how scary this terrible situation with your neice must be on you and on her parents and all of her family.
I will be keeping your neice in my prayers and also sending many positive thoughts for a quick and gentle recovery for her to stabilized health. As Irish mentioned, there are many newer generation medications that often can help so please continue to have hope and know that we are all thinking of you!
Hugs,
Daisy
Season
My heart goes out to your and our family. I will emmebr you all, and your niece, in my prayers.
Kathyx
Season
I am so sorry your niece is in such bad shape. I also have a niece
with lupus. She is getting married on Saturday. She has her ups and downs
I am praying for your niece and your family.
Love harlin
Your niece will be in my daily meditations and positive thoughts for you and the rest of the family.
oh Season, how terrible!
My niece who is 41 has to have dialysis three times a week. Her kidneys are completely gone from lupus that has NEVER really gone into remission.
She says it isn't so bad now that it has completely destroyed her kidneys.
But the dialysis is killing her as well.
We are hoping for a kidney transplant.
I hope Your niece pulls through this crisis.
Keep us posted.
Hugs
Elaine
Season
I am so sorry your niece is extremely ill. It's scary how quickly a person's health status can change.
I will pray for your niece, family and her medical staff. Hopefully they will be able to turn her medical crisis around so she may get healthier and stronger in the days ahead.
Season - keeping your niece in my thoughts and prayers that she will pull through this major lupus flare.
May the doctors find the right treatment plan that will help her recover.
Hugs,
Bucky
Praying for your niece that she will make a full recovery.
This thing is so scary, it smacks you right in the face!
Duchess
Also praying for your niece. I am so sorry that she has to suffer like this. None of us know when we are hit with a sudden flare of some type.
Please let us know how she is doing.
susanep
ditto Irish
Season,
I said a prayer for your niece as soon as I read your post, this morning. Please keep us posted.
Blessings,
Jorja
Also saying a prayer for your niece - please keep us posted on how she is doing.
As we know, these autoimmune diseases are VERY unpredictable and deadly...wish doctors and others would spend more on researching this than other things...plus, the fact that most of us have chronic suffering that never goes away.
One minute we can be feeling fine...next, we feel like we got hit by a truck?
My prayers to her-your entire family...Miracles do happen!! keep the faith.
Gursie
Praying also, season!! So sorry to hear this!! How old is she?
Thanks everyone for your kindness.
She is still in the Trama Unit hooked up to everything. I don't know the medical terms but her blood was taken out and cleaned and put back in. She is also on dialysis. Her doctor seems to know-his-stuff which is great. He mentioned today that he wanted to start her on chemo and rituxab.
I asked him what were her chances and he said he had only one other patient that was as bad as my neice and he managed to bring her thru it. He said my neice was one sick little lady. She is 38 yrs old.
He talked to the family about Lupus and Autoimmune Diseases and how bad everything can get from a major flare. He said it wouldn't be easy to get her back to where she needed to be. He is also a bit mystified and puzzled as blood clots keep popping up.
He was very dissapointed in how her previous doctor was treating her and the lack of medication that she needed.
Thanks again for your support.
Season,
Thanks for the update. I know this is extremely difficult for you and your family.
It's great that her doctor has a lot of experience and has successfully helped patients having serious complications from autoimmune diseases.
I continue to keep your niece, your family and the medical people helping her to recover in my prayers.
Take care,
Sadie
sounds like she is in good hands right now, and getting the care she needs. I think the blood-cleansing is called
Plasmapharesis....
Wondering what meds she was on (if any) and if she had any symptoms? these autoimmune diseases are just plain
evil..they love to hide out and keep calm, then all at once, seem to attack.
Again, many good thoughts and prayers are with her.
Gursie
Season,
Thank you for letting us know what is happening with your neice. It must be very traumatizing for you and all of her family right now to have to deal with her being so very ill. I will continue to pray that her doctor finds a way to bring her thru this horrible flare and back to stabilized health.
Sending gentle hugs,
Daisy
Season,
I'm just reading what a scary time your neice and family are dealing with. It sounds as if she is in good hands now, and her doctor is doing everything he can. I pray they continue to treat her aggressively and bring her through this flare and back to stable health.
Please remember we are all here for you and your family. Keeping positive thoughts for you all.
Melinda
Glad to hear she has such an excellent Dr working with her and explaining things to you all. Still a very worrying time for you - my thoughts are with you. Hope the New Year brings good news for you all. Keep posting Season,
xx Ailsa
Season
Still keeping you all in my prayers.
Kathyx
Season,
I'm sorry to hear about your niece. I will say a prayer for her & you too.
Carie
We got some bad news today.
I will post an update.
Praying for all who know and love your niece. Praying for the doctors and nurses caring for her.
PRAYING!
Sending up prayers Season!