Yes.....my worst fear has been confirmed. I am being referred to a live transplant list. I am waiting on the transplant team at MUSC to contact me to set up a day for a transplant class, complete physical, and what needs to be done to set up possible donors to test and get the ball rolling. My GFR is 16. MUSC states that going straight to a transplant from a living donor is best for me. No Dialysis if we can help it. Studies show that people do better this way. I am 37 (as of today) and the possibilty of needing another kidney 20 years from now is likely. MUSC said that the longer I can go without dialysis the better for someone my age to live a good life.
My kidneys are passed the point of taking the big autoimmune drugs. I have scars that are irreversable. Thanks SJOGRENS!!!!! Anyone who claims that SJS is nothing more than a bunch of annoying symptoms that can affect the way your life is.....DOESN'T have a clue on all the other slight chances it CAN do.
I laugh at the medical journals that claim Sjogren's isn't life threatening.....they obviously are ignorant of the situation! Sorry.....have to get my frustrations out. I have two toddler boys and a loving husband.....I will get through this. Any prayers thrown my way will be greatly appreciated. Thanks for everyone on here!
Vicky
www.sjogrensandme.blogspot.com
Continuous prayers
So sorry that this is the result.
I feel your frustration.
I go crazy when they say it is only dry eyes and dry mouth. Or that it has little to no impact on your life.
Can't say that I do much laughing about it, more like ranting.
But when I get over that, I move onto the next step to educate.
I think your blog is a great way to do that.
Some of the online medical journals do pick up on blogs, so you could be educating them as well.
Do let us know how the donor search goes.
Attended a lecture on CKD two months ago. Most of it was way over my head, but do remember that getting the right diagnosis is a most important and sometimes very difficult thing.
Be good to yourself, Maybe an extra hug from those little ones? or something that makes you feel good.
Happy Birthday to You
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Vicky,
I will pray about your transplant. You are right about the scope of this disease. I'm so sorry that it has affected you so severely. (My mom also had kidney failure with Sjogren's.)
I hope that this birthday will be the turning point for improvement in your health!
Cheryl
Vicky,
Sending lots of hugs and prayers your way. I'm so sorry that you have to go through this at your young age.....but it sounds like you have good doctors now and that you have faith in them....so that is a big plus.
Come here all you want to vent and get your frustrations out.....it helps! And we will be here for you!
Happy Birthday....maybe this day is a brand new start for you of good things to come and improved health as Cheryl said...I hope so!
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Vicky dear you will be in my prayers tonight and as long as you need them. I hope that kidney is soon in being found and you come through with flying colors.
It makes me so sad when I hear of someone so young being so ill. Take care and please know that we are all behind you and doing what we do best. Sending good thoughts and many prayers up for you.
Hugs and God Bless,
Pooh
Vicky, I'm sorry that your condition has come to this...but I'm glad your doctors take the proactive approach and start the process for transplantation now, rather that allowing time spent on dialysis before seeing the need, and in that way potentially damaging your recovery.
I hope this is all a memory before your next birthday, and next year you can ask for something fun!
Like many chronic illnesses...SjS in itself is not life threatening, it's the consequences of damage to other organs that can be. For some people it's the disease that causes the damage, for others, it's the treatments...either way, it's frightening, demoralizing, and cause for constant vigilance of our own health concerns.
Good Morning Vicky~~
I hope that your Birthday had some highlights for you. Happy Birthday!
I have a hard time knowing what to say with the circumstances that you are facing in what is essentially a letter here. I do better in a one on one conversation when the situation is this sensitive. Feedback from both sides.
I can offer that if you would like to have another person to talk to WHENEVER you need, that I have unlimited phone minutes and can return your call immedietly if you ring me. I have been told I am a good supporter if that helps.
My Email is sfarley1@localnet.com if you want to get in touch and at that point I will give you my phone number if you would like.
Of course my thoughts are with you and your family.
~~Shari~~
Thank you everyone. I really appreciate your help. Just having someone listen to my ups and downs makes me feel better. I think I will be less stressed after I talk to the transplant team and have a transplant coordinator assigned to me for any questions.
I went home sick from work yesterday. I put in a whole day, but the last hour of work I started to feel achy and got chills. I had to skip out on my birthday cook-out at my mom's. I get a temp. of about 101 and I am colder than a frozen popsicle. This happens every couple months to me. I was fine by this morning like nothing happened. I think there is a correlation between me getting stressed and this.....does anyone else do this? I was making myself scared silly about the financial part of all this yesterday. My heart was pounding. I feel better today. Of course everyone I know tells me not to worry about it. My work (which is at a hospital) will plan a fundraising event for me. My sister's work has stepped forward too. We are hoping that she will be a match. Please pray that she nearly a perfect match. I'll let everyone know when all this gets going. I hope it is after the first of the year. Maybe I can get my ducks in a row by then! LOL
Thanks again!!!!
Vicky
Vicky,
Sorry your birthday was a bust. I hope next year it will be a real blast and full of fun.
Take care,
Pooh
Vicky:
You can count on my prayers too. I'm praying for a donor and peace for your spirit.
Sue
I periodically get low grade fevers and chills only to wake the next morning feeling a little drained but for the most part like nothing had happened.
Shari, have they said it has to do with Sjogrens? My Docs say that I must have a virus or something. I tell them it is different and of course they look at me like I have four heads.
Thanks!
Fibromyalgia and or Sjogrens.....it tends to happen more when in a flare ( more imflamation anf pain etc.) I also have issues with body temp and blood pressure fluctuations.
Sorry this is short..have to go to my daughters this morning'
Enjoy your day..thinking of you~~Shari~~
Vicky, I'm sorry you are going through this and the disease
has brought you to this point. I understand your fears. I may
never be faced with what you've come to, but right now I'm dealing
with the idea that may happen and it terrifies me. I too am 37
years old but I feel 87. You will be in my prayers as well. Who knows
why this stuff happens, but I do know his grace, mercies, and our faith in
that is more than enough to get us through the difficult times. Take care
of yourself. Hugs to you!!!!!!!!!!!!!!!!!!
Lori
Vicky sounds like your birthday blessing is all the wonderful people around you who are helping you through this. Despite all the bad news this is a shining spot. You are in my prayers for a match, a quick and safe surgery and a quick recovery. Along with all your family and friends at home you have a world of friends here who are all wishing you well. Take care we all are waiting to hear you have a kidney.
vicky
just wanted to send you a big hug and to let you know you will be in my prayers tonight. I am also a mum to a almost year old baby boy and also coming up to 37 (in november) and since being diagnosed with sjogrens 6 months ago, its been an emotional rollercoaster.
Please let us know how you get on and when you have some news on a prospective kidney.
love annie