Hi everyone 
A few of you have emailed, IM’d and Tweeted asking for an update on what’s going on – so I thought I’d take a few minutes and update everyone on the current status on the health front. I figured, the blog was a good a place as any to keep the updates flowing, so that everyone will get the same amount of info in the same amount of time
First, this past Friday (a week ago) I left the hospital in Phoenix with a prescription that I seem to have had some sort of allergic reaction to. The steroids basically made me swell up so bad that I could hardly walk by 9 AM in the morning. After two days of feeling like I was about to Hulk out of my legs and explode all over the floor, I finally got in to see my GP who is helping me titrate off the medication until I can get in to see the Hepatologist, which we assumed would be weeks and weeks away. A small but frustrating complication in the journey to figure out what is going on, for sure. The good news about the visit to my GP is that she was able to sit down with me and go over all of the records from my visit and talk to me at length about what was going on – thankfully so – because I was totally lost.
She basically confirmed some of the things they’d told me, shared a few things that they hadn’t told me and agreed that the likely course would be transplant, but she didn’t know when or how long they’d wait to do that.
I have Stage Three Liver Disease – she said they searched, researched and investigated every exotic cause for the condition but in the end there seemed to be some sort of miscommunication regarding a medication I had taken and if that hadn’t happened, there was a very good chance I could have avoided some of the crazy testing that went on.
The whole ‘taking an anti-fungal that is contraindicated for a patient with liver issues’ seems to be what caused this recent flare up…however, it still doesn’t answer the question of ‘what in the hell do you mean, liver issues? I don’t have liver issues!’ which made that medication so bad for me in the first place.
My GP seems to think that I might have some underlying genetic issue going on here – something to do with how my body handles certain things…she isn’t sure. More tests to come, for certain. (Kind wishing, right about now, I had a little bit of honest to goodness medical history to go on)
At any rate, when I left the hospital on Friday, the Hepatologist informed me that I needed to make an appointment and get in to their office within two weeks – then when I called on Monday morning to make that happen, the office informed me that they don’t accept new patients and even if they did, their appointments were months out (November) – so I was SOL.
Imagine my shock and surprise this morning when my phone rang and it was the clinic calling to tell me that they’d like to see me, on Tuesday. This is good news, because this clinic is supposed to be one of the best in the country. My GP (who I called to confirm I needed to make this appointment) said that if I am going to have a transplant and I want the best, then this is where I need to be. We all know how I feel about having the best, yes? Case closed.
To add insult to injury, I seem to have contracted some sort of ‘issue’ while in the hospital – the Dr. is testing for MSRA – it’s the pits, I gotta tell ya.
Right now, I am just truly overwhelmed. Not knowing what is next is hard and being scared is even worse. I worry about what’s to come…and that just makes me depressed.
We’d appreciate any thoughts/prayers (or whatever makes you comfortable) as we go forward.
The best place for updates are right here on the blog, via Twitter or on Facebook.
Related posts:
{ 4 comments… read them below or add one }
Many many prayers from me. Thank you so much for sharing this update because I’ve been looking at tweetdeck and waiting to see if you’d update soon (trying not to nag). I am very sorry you’re dealing with such major health issues right now and that getting help is turning into such a complicated ordeal. I don’t know much about liver transplants. What I know about organ transplant I’ve learned from Julia (http://www.kidneysandeyes.com). I just pray that the road gets easier for both of you. (They’ve been dealing with MSRA, too.)
Dawn, you’re welcome to hit me on Tweetdeck any time! I hate to be such a debbie downer on Twitter, ya know? I worry that that’s all people will know me for, so I just keep it to myself. I’ve decided to try to update here as much as possible, that way at least people have a choice
Thanks for Julia’s link (again) – I know her family has been through a lot.
MSRA = the suck. I hope that’s not what I’m dealing with – but whatever it is, I hope it goes away soon!
What is MSRA? Our prayers are with you. Can they run your DNA to see if they can find a link with your bio parents that might show anything medical that might help?
We love you,
Dad & Soretha
Heya Mom,
MSRA is a Staph infection that is typically ‘hospital borne’ – meaning, it’s typically something you only get after a stay in the hospital – and it’s nasty stuff. Hate it.
Well, you know Patti hasn’t been the most honest and/or forthcoming when it comes to info. I’ve asked her point blank. She won’t give me any real info on my bio father, other than last year, when I started having some health issues and I asked her specifically – she said he was dead and that one of his daughter had had some sort of transplant – but didn’t go deeper.
Talking to her is like talking to a brick wall. She truly does not believe I have a right to know her personal info – up to and including who my birth father is.
It’s frustrating.
As for DNA, I don’t think it’d do anything with regards to finding my bio father – unless he’s in the ‘system’ or something.
Thus far, the Dr.’s are just casting a wide net – so hopefully we’ll discover what the issue is soon enough