Hi all! I went to the transplant class that is mandatory before I see the transplant team at MUSC. It was very informative. Some things I knew...some I didn't. At the beginning of class they played a video of how people felt before and after transplant. I looked around the room and lost it. The tears just rolled down my cheeks. Many of these people were facing what I am. Some from blood pressure, diabetes, PKD, and me....autoimmune disease. I didn't notice anyone else having to be in there because of an autoimmune disease. I am writing a series of 2 or 3 parts on my blog about this class. If you would like you can go to it. (Sorry, the first segment is LONG and I am too tired to write all of it on here).
Take Care!
Vicky
www.sjogrensandme.blogspot.com
Vicky,
I can only imagine the anticipation of receiving a new organ. I would have cried if I'd attended the class, too. I'm sure that every person sitting there had his/her life goals hinging on transplant availability and outcome. (Is it changing your perspective on everything?) I hope the timing is just right, and a perfect match wouldn't be bad! I will pray for you!
Cheryl
Hi Vicky,
I'm glad that you feel the class was informative for you and I'm also glad that you are getting your feelings down in words both here and in your blog...that has to be extremely helpful to you! I cant even begin to imagine how you feel, but please know that you are in my thoughts!
Keep on writing if it helps you....we will be here when you need us!
Hi Victoria :)
It sounds like a very worthwhile class. I, too, hope you get a kidney match soon.
It doesn't surprise me that you didn't notice others needing transplants because of AI diseases. I believe it's pretty rare and more common with lupus than SjS - but still rare. I am just sorry that it has happened to you.
Take care - Scottie :)
victoria, It scares all of us to read about your need for a new kidney, but the good thing about it is that it has happened at a time in medical history when they know so much more about transplantation. I don't blame you for crying either. It must be a very traumatic thing.\
My one son has a friend who had 2 transplants (first one didn't take) back in the 80's at the age of 10 or so and did well. He is now 36 years old and drives semi and owns his own trucking company. LIfe does go on I would guess. He has done very well and has grown some in spite of all the antirejection drugs. I will take a look at your blog when I have time. Thank you so much for taking the time to document your feelings and adventures. Irish ;D
Thanks for your kind words Cheryl, LynnMarie, Scottie, and Irish. You all make it easier to deal with and I appreciate it. I have days I feel I can face anything and other days that I need the extra hugs.
Hi Vicky,
I will hope and pray that you find your new lease on life soon. Keep writing that awaesome blog you inspired me to start mine after i read yours.
Im glad you can let your emotion out too it will help a lot. This is such a bit thing for you i cant even begin to imagine.
You are in my thoughts and prayers. keep us posted we are all here for you
Pud
hi vicky
i just wanted to let you know that i will be thinking of you whilst you go through this difficult time and will be praying for a suitable match to come your way soon. I also know of a friend who had a transplant at the age of 12 and they are now a mum of two, happy and healthy, in fact i see her almost every week at my baby group.
keep smiling and please let us know how you are getting on
annie x ps i have read your blog from time to time also, keep it up!!!
Thanks Annie and Pud!
Pud, it makes feel happy that I inspired you to start a blog. It really helps getting your feelings down on paper...the good and the bad. I hope it will help others too. Under profile put SJS as one of your interests.....you will be the second one in blogspot world that has it listed. (I won't be alone anymore) ;D
Vicky
www.sjogrensandme.blogspot.com
Victoria I just wanted to wish you luck in getting a kidney match. I have a friend who is waiting to have a damaged kidney removed and I know how scarey the thought of only have one functioning kidney is for her. I don't know how you cope with this illness and kidney problems - you must be very strong and I am sure more than one of us will draw strength from you.
Beverley
Vicktoria, I just read your blog and it is very well written and a wonderful insight into this complex illness and the struggles that many of us face. I am so sorry to hear that you are now dealing with kidney problems and the struggle for a kidney, especially at your young age.
I always keep all of my Sjogen's World friends in my prayers on a regular basis, but I will be saying special prayers that you may find a match soon, go through a successful operation, and get relief from progression of this illness.
Nettie
Here's hoping you will find a match soon and also will be successful in raising the funds for what insurance does not cover, and especially for the aftercare. I know for myself, being on CellCept (originally and primarily an anti-rejection drug) for the neurological involvement of Sjogren's, I live in fear of losing the insurance coverage for this medication. Just that one would cost us $1100 a month without insurance, not to mention the other meds.
You are a great inspiration to us all - take care,
Genko
Thanks Genko and Nettie. I appreciate all the prayers. I think that prayers have helped me more than medicine. I feel better now than 4-6 months ago. I am getting ready to go on vacation to New England. :) I am actually excercising 2 to 3 times a week to get in better shape for the transplant. The transplant team is in the beginning process of contacting my living donors. (fingers crossed)
I go Oct 21 to MUSC and have a series of tests they will run on me like EKG, lung scan, etc. I will also meet up with the transplant team and they will decide if I am transplant worthy. I hate the way that sounds......I suppose there is a chance they wouldn't accept me. I am worried about my high ANA's.
I will post more about this appointment after I have it! :)
Take care!
Victoria
www.sjogrensandme.blogspot.com
Oh Victoria,
I still keep you in my prayers as well for all that you have to go through. Good luck with the appointments and tests on the 21st....I can only imagine how this all feels for you!
Enjoy your trip away from everything.....have a great time out East. The weather should be beautiful this time of year and the colors amazing to see. I love fall! Have fun but take good care!
Hi Victoria,
I will certainly add my positive thoughts and prayers that everything goes well for you on the 21st an that things continue to go well for you. Its great that you are preparing yourself in readiness.
Keep fighting the good fight my friend. Enjoy your trip away and have a great time.
Pud
Victoria, I pray that a perfect kidney becomes available very soon, it must be a difficult wait...
I live in New Hampshire and the leaves are just starting to change here, its cool 60's and sunny today... I love this time of year. There is a tree near my lot that is screaming red and orange it is beautiful.. and there are lots of pumpkins and apples pies around ;D... I hope you enjoy your trip !
Vicky , sending all my best wishes and prayers from across the UK.. Hoping it won't be too long that you get all of this over and done with.. Have faith, Bless you , Dolly x