I met with my Nephrologist yesterday (Tues. Oct 16/18). She said my kidneys are dumping out of control amounts of protein and a lot of blood. The night before my appointment, it came up on the “My Chart” site that she had scheduled the biopsy for next Wed. at 7 am for me as an out patient with no transport. Umm…Let’s just say that was the straw that broke the camels back. I had a complete meltdown. Probably long over due. I needed a good cry. I don’t cry often but when I do I can’t even stand up. I’m thankful Mr. CrankyPants grabbed me.
Fast forward to the meeting with the doc. She said her assistant scheduled that and she won’t even be there that day and she wants me in sooner. She will have me admitted to the hospital and transported via ambulance. She said she wanted to admit me to the hospital Sunday evening and have me transported early Monday morning. I’d have the biopsy done and transported back the same day. WHAT?! So a bad back, a biopsy that causes a significant amount of pain, and 10 hours of transport. Ummm…we’ll have to talk about that further. I find it strange she’d send me back same day given the last conversation I had with her where a biopsy was talked about, she said she doesn’t like out of town patients traveling home the same day lest there be complications.
She still has not called me back. It’s Wed. night now and I haven’t heard what the hell is going on. She’s left me sitting on pins and needles and I’m a
little a lot frustrated. She’s the one alarmed, and wanting me in asap yet she’s not getting back to me. She’ll be away as of Wed. for three days.
I will be calling them tomorrow to find out what’s happening. Talk about extra stress I really don’t need right now.
Add in I found out she is refusing to put me out for this procedure. My fear is extreme to say the least with medical anything let alone a giant needle stuck in my back through my kidney. She’s willing to give me local anesthetic, some Ativan which won’t touch my fear and something for pain. The local only freezes your skin not your kidney. I have to be awake for this. Someones’going to get hurt. lol. Well I guess it’s me. All I wanted was to be given enough of something so that I don’t care what’s happening. For me with this kind of fear Ativan is like eating a sugar pill.
And… I did have to have the “I’m not taking Prednisone” conversation with her. It’s their first line of treatment. I took a hard stand. She said she would bring it up again, but if my stance is still the same, then she will have to get creative. I thought good, get creative. Maybe she will learn something that will save me and others from that horrible drug. I can’t wrap my head around how they script such a dangerous, damaging drug like that so freely yet are so closed minded to medical marijauna, which by the way in now legal here in Canada as of today. Well the recreational form. Medical was already legal.
Anyway, I just wanted to be very clear with her from the beginning that Prednisone is off the table as an option for me so I’m not constantly hounded about it. It sounds like I still will be regardless. I’m so serious that even it if meant life and death I wouldn’t take it. Keep me comfortable and I’ll choose quality of life over taking it if it ever comes to that. And it could.
I hope tomorrow that I will actually know what’s going on. This past week has been so very stressful.
I also had another specialist appointment today with an ENT. I was sent for blood work testing for allergies and sjogrens. Thankfully he was really decent to me. Online he has a bad reputation but I had no problems with him at all. He was as helpful as he could be. For that I was grateful.
I don’t need surgery on my nose which is good news in a way. There may not be a way to fix what’s causing so many problems as he thinks it’s a part of having lupus and or sjogrens if that shows up. He gave me a nasal spray that I hope will help. None have in the past. I’ll find out in the next week or so if I have allergies or sjogrens.
Who knew that all you needed was a single blood test to find out what allergies you have now? That’s so much easier then the way I used to know.
I’m practically friends with all the lab girls now because I’m in there so often. I should just move in.
A couple more things…I’m absolutely banned from taking Advil or anything of the like. It damages kidneys and stomach. I’m going to have to get medical marijauna for migraines and (Sorry guys) cramps. Advil was the only thing that helped. I’ve also been taken off all meds about a year ago that are known to help my kidneys which may be why the disease is really showing now. They all made me ill, like damaged my stomach so, it will be really interesting to see what the doc will come up with to treat this if it is lupus nephritis. I’m probably looking at a chemo drug that’s given via IV infusion. That’s not terribly comforting either.
So that’s the update. I hope to know more tomorrow. It won’t leave me much time to prepare to be away. Not to mention recovery after the biopsy is longer than I would have anticipated. My poor guy is going to have a lot to carry through this. I feel for him.
Well this was going to be a short post. That didn’t happen.
Hope this finds everyone having some low pain days.
Happier Days & Better Health,