I have been feeling VERY blah lately. I mean, nothing really interests me. I could spend HOURS sitting on the sofa watching TV and be completely content. I just feel so very lethargic and apathetic, and I'm a bit frustrated by it because I can't seem to get out of this "funk".
I got my labs from Mayo last week, and my protein is still hovering around 11 grams/24 hours. Next steps? Well, I'm not exactly sure what the next steps will be. There's another drug to try, but it doesn't come without side effects, so I need to weigh the pros and cons to see where I land. I have an appt with ANOTHER nephrologist at the U of M next week to discuss the transplant, but I'm fairly confident that the end result will remain the same.
BLAH.
BLAH.
BLAH.
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I...
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I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there...
Its so strange, after reading your blog I realize we all go through these same types of feelings. Sometimes I am fully focused on these stupid kidneys, maybe I wipe myself out. I swear there isn't a day that goes by that I don't think about my FSGS at least 20 times or more. How sad is that? No wonder we have those days/WEEKS that we feel so just.... disconnected. Too much mental and physical energy is involved.
ReplyDeleteHeehee...I wonder if I do the same thing...all of the ups and downs probably DO wipe us out!
DeleteHi! So sorry you are feeling blah. I can relate!
ReplyDeleteWishing you good thoughts :)
It's funny (not in a ha ha way :) but after reading all your posts, I thought it was strange that your docs think you are too healthy for a transplant. My docs up here at Beth Israel in Boston believe in transplanting earlier rather than going to dialysis. I made it clear that I never want to have dialysis and want to have a transplant as soon as my numbers really decrease. They are 100% behind me. Of course my blood type is O, which makes finding a donor much harder. But my entire family is willing to donate so hopefully someone can help me out when the time comes.
Right now I am pretty lucky that I am somewhat in remission with my protein hovering around 1.2 grams and my GFR is 1.2.
I was officially diagnosis with FSGS in April. Originally we thought I had MCD five years ago. Went into remission and relapsed after 4 years.
I decided it was best to get new doctors in town, and sought out docs at the BI. (beth Israel)
I refused Prednisone as my primary treatment. So they put me on Prograf and 10gm of Prednisone and a host of other drugs.
After 8 months they figured I must have FSGS since I was only a partial remission. So they did a biopsy which confirmed it in April.
Have to be honest... the news destroyed me :(
I was so hopeful when it was just MCD. Now, I will never get better...just a waiting game for the inevitable. Which sucks.
Haven't really had a break down yet about the news. But everyday I think about my health and how the life I thought I was going to have won't be the one I wanted. I have a 9 + 10 year old and worry how my health will effect them.
My drs. changed me to Cellcept. I've been on it for almost 2 months. I feel better on it... no more shakes and GI problems. But now I have trouble falling asleep - just terrible insomnia.
Anyway, Just wanted to share and let you know your story really has resonated with me. I have asked my drs about any local support groups they must have or know of, but there is none. I check out inspire.com everyday. And I am participating in the Nephcure walk in October. I just did a FSGS study and donated the $100 to them since they are the only ones out there actively try to find a cure :)
If you ever want to type to someone, feel free! I am at kat@taylormadedesigns.com :) Best wishes to you!
Thank you so much, Kat, for your story. It's always interesting to hear other people's experiences with this damn disease. I'm THRILLED that they approach transplantation differently up there. I met with a doctor today (I'm blogging right now, but the post should be up by tomorrow) and I'm thinking that it's not necessarily nephrologists that have the issue, but rather surgeons. Oh well, just another barrier I have to break through, right?
DeleteI checked out your website too...GREAT stuff in your etsy store!!!
Just found out today I have fsgs. Not sure how I feel though.
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