Most everyone knows what I've been through up until now. I'm suffering from some kind of auto immune crisis that's affected pretty much all of my organs.
Right now I'm in the hospital with renal failure. I have a port in so that I can have dialysis when it's necessary. So far necessary has been 4 times since Monday, Feb 15. I'll probably get sent down there again tomorrow.
This blog will be graphic and descriptive. If you're squeemish...don't read it. If you are faint of heart...don't read it. If it bugs you that people tell intimate details of their lives...don't read it. If you don't want to hear about my urine output...don't read it. If you don't want to hear about bloody boogers...don't read it. I think you get my drift.
I'm here to tell a story...my story.
Why did I choose the name, "The Interesting Patient"? Well...back in 1993 when my Dad was diagnosed with gall bladder cancer I learned that it's NOT a good thing to be diagnosed with a rare cancer.
I've learned now that it's also NOT good to be the 'interesting patient'...someone who does not have clear cut, easy to diagnose illness.
It's much easier for the medical world to say..."You're diabetic." or "You have breast cancer." When you have a host of things wrong with you and they have to "figure you out" it's much more difficult. They meet about you, consult with other physicians about you, bring in teams of people and try to figure it out.
My own renal doctors have joked how they need to call in Dr. House to figure me out. But they're trying and they meet and consult and reformulate ideas. I'm grateful for them.
The last two days have brought ups and downs. I've had 2 blood transfusions, platelets, plasma, fibrin infusions, nose bleeds that last 2 hours. The last 2 days I've been urinating but it's full of blood. No one is worried about it but it scares the hell out of me.
Yesterday I stood up to go to the bathroom and blood ran down my leg. They think it might be that my bladder got bruised and/or irritated when I had the Foley catheter in. Tomorrow we'll know more. I'm still bleeding when I go to the bathroom but we don't know where the blood is coming from. Could it be that on top of everything else I am having some kind of freakish menstrual cycle. PLEASE! Can we just shut down that factory already? SHEESH!
Thanks to a total allergic reaction to Bactrim I'm already a freak because I'm shedding my skin like a cicada. The skin is almost black when it peels off. If I were the person able to pick and peel the skin....I'd love it! I'm not so excited that it's me.
One thing about Bactrim...it's a BAD drug. Don't take it...get something else. They've outlawed it in the UK. Basically it's given me a huge chemical burn all over my body...and I do mean ALL OVER MY BODY!
So...I'll start the blog here and hopefully be able to update it regularly, maybe daily.
Time for me to put some cream on my face and try to go pee again.
Well, whenever I have had family or friends sick and live a distance away I really appreciate details. It may not be pleasant but it helps me to understand what they are going through, especially since I can't be around to know for myself. So for me - I appreciate your candor. I accidentally ran into a blog for a young HS age kid who has a different set of problems except the renal failure and has been in primary children's hospital for 2 weeks and no one can figure it out. He is the interesting patient there I guess. But now he will get to be the interesting patient at Mayo Clinic tomorrow. He is suffering from such severe muscle spasms they had him in a drug induced coma for awhile. I can't imagine having to be flown across the country in that state!
ReplyDeleteI agree Rennie - I wouldn't want to be the interesting patient. I'm glad it sounds like you have a set of good doctors who are doing their best to figure out this puzzle. In the meantime, I will continue to remember you AND the Doctors in prayers!
Hi Rennie ... I am glad you stopped the Bactrim when you did ... you are right, Bactrim can be an absolute miserable med. Even after you stop it, it can continue to cause the rash/reaction ... I'm so sorry that you have had to endure such side effects. Sadly, sometimes the things that are suppose to help us - really hurt us. {steroids, bactrim, methotrexate, etc.} You have the love and support of your family and friends ... and your humor and spirit always lift me. Sleep well Rennie! oxoxox Nanc
ReplyDeleteI'm so sorry this is happening to you! I wish I could say all the right things to help you, but I'm afraid I would really say all the wrong things. I can't imagine what you're going through. I can't fathom watching blood run down my leg for no apparent reason, or having dialysis. I've seen it happen to lots of people in my years in the Lab, but I've never had it personally. It makes me sick that you can go from being healthy and vibrant to some unknown trouble that can do some serious daamage. I'm freaked out (more than a little) about the skin peeling off thing. A BIG EWE! And a HUGE hug!
ReplyDeleteIt has to be rough to be in your shoes. As a caregiver of my dear hubby, I have to say to Erc... Hang in there! It's terrible to see someone you love have these problems. I won't tell you it'll be ok, or anything like that, because you never know if it'll be ok or not. But I know the Lord helps those who do their best, plus some. You have to do the "plus some" to get the miracles to happen.
My love and hope is with you.
Lisa