I think my job will be the death of me. I'm a busy that I can't understand, describe, or get a handle of. I don't have time to notice the nuances of my health that I once did, and for a person with a chronic illness, nuances are important. They can help me identify triggers that make me feel bad, or help me notice things that make me feel good. Now there's just.....no feeling.
A few weeks ago, I noticed that I was having a noticeable difficulty catching my breath. It felt like I was walking up multiple flights of stairs, when in fact I was only walking from my car to my desk (a trivial distance, really). I called my PCP to set up an appointment, as I was due for a thyroid check anyway, and ended up describing my symptoms to a nurse, who then told me to go to urgent care. So I went to urgent care, and that's always a process. People like me walk into places like that, and you can see the look on their faces when they see my labs. It's like they're shocked that I'm still breathing. Whenever checking in at any new place now, my line is, "I'm the healthiest sick person you'll ever meet". They laugh, thinking I'm a nut job, and then they'll do labs.
Long story short, I ended up getting referred to the emergency room from urgent care, where I spent 6 hours essentially being ignored. And get this....it's all because the urgent care's stat lab for potassium measured me at 2.9 and yet a couple of hours later, it measured 3.4 without any intervention. So what that means is that the lab's measuring equipment is off. And I got to spend 6 hours in an emergency room (out of network, by the way), only to drink a hideous orange liquid containing a boost of potassium and be on my merry way.
And yet, miracle of all miracles, I still have the exact same symptoms (sarcasm, my friends). I can do a yoga class one morning, and yet the next day become winded walking. It's unpredictable, insidious, and just plain awful. And I guess I'm just supposed to "be okay" with it. To feel "lucky that it isn't worse".
Screw that. (I have harsher words, but that'll suffice for now).
Here's a great little ditty that I discovered last week. I go to a medical building that contains my lab, my primary care doctor and my urgent care. My PCP and the urgent care is an in-network provider, but the lab isn't.
They're in the same building.
They're all under Park Nicollet.
But CIGNA is a bloodsucking insurance company, so there's that.
My husband started the donation testing process and even that isn't going as I had thought. Does anyone at the U of M give a shit? I'm thinking no. He's sent in blood work, I've done bloodworm, he did a saliva follow-up because time had expired. And yet, here we are....3 weeks later, and no contact. What the hell? I mean......LIVING ORGAN DONOR WANTING TO DONATE ORGAN HERE!!! WHAT THE HELL DO I HAVE TO DO?????
This would be my surrender flag.
I've been following your blog since my 5 year old daughter was diagnosed with FSGS in January, 5 months ago. At the time her creatinine was .6 and gfr 90. She is now on dialysis. I love reading your posts. Your sense of humor brightens this otherwise bleak and horrific disease and makes me laugh, so thank you. We too are going through an infuriating process of red tape in regard to transplant. We have two donors with her blood type ready and able to donate. But the hospital is dragging their feet and haven't even wanted their info yet. Grrr. Hello! We have a 5 year old kid who needs a transplant - hurry it up, won't you? It's like talking to a stone wall...
ReplyDeleteThis is very unfortunate. No one has to live through this. FSGS does suck, but can be cured if you can get a kidney donor. However, it seems this doesn't look simple enough for them. I'm really sorry this has happened to you, and I hope that their issues are straightened out soon, as lives are at stake. Take care!
ReplyDeleteEarnestine Doescher @ US Health Works
hi. i am so bummed for you. mainly, i wish you could uit your job and focus on the nuances of your health. since my diagnosis in early april, that is all i do! and marvel at how weird being on a lot of prednisone is... i just want you to know i feel your pain. i wish i could help. please ake care
ReplyDeletei also kinda wish i could type better on a phone
ReplyDeleteblissful chick...you crack me up! I truly thank you for understanding.
ReplyDeleteHi Earnestine....yes, a transplant CAN potentially cure someone of FSGS, but the recurrence rate is between 5 and 50%, depending on genetic markers. The U of Minnesota suggested a particular genetic test to help determine a recurrence risk for me, but it was $6000 and insurance didn't cover it. There are no guarantees here.....