I had a really really hard week.
I ended up getting IV four times, blood tests seven, and feeling horrible all week. Muscle cramps, heart palpitations, numbness, tingling, and just being grumpy despite trying to smile.
Tuesday was a holiday so my doctor's office closed at 1pm. Blood tests didn't get back until 12:50pm, so my doctor couldn't do IV in the office. Instead I got referrals to urgent care and the ER and was told to choose where to go.
I went to urgent care, where they were very nice. They put in the IV catheter, took blood tests, did an ekg, and once they saw how low my calcium was they sent me to the ER. The doctor in the ER was a sweetie. They did more blood tests, another EKG, started the calcium IV, then got blood test results and when they saw how low I was they wanted to admit me (I was down to 6.9, with under 7 being panic low levels, doctors getting paged and normally an automatic admit). The doctor was impressed with how much I knew about my condition, so she agreed to call the endocrinologist on call and ask her what to do. The endo agreed that if I would follow up at home, with how high my phosphorus was they would be wary of putting me on continuous infusions of calcium anyway, so they let me go home.
While I was there the ER doctor had fun using me at a teaching tool. With my permission she had the residents and interns in to tap my cheek and see my twitch and to grill them on the signs and risks of hypocalcemia.
I ended up putting an SOS out to family on Friday because I couldn't do the cooking for Shabbos, DH was working and the kids couldn't do it all. My brother in law came, helped get things finished up B"H. He stayed and even washed my dishes after Shabbos. Thank God for good family.
My doctor keeps telling me I need to stop pushing myself and using my calcium up, but that is easier said than done. She is also distressed over my lack of veins. The ones that used to be reliable just aren't any more. It is taking multiple tries from the pediatrician to find a vein at this point, not one else will even try anymore. She asked my surgeon about placing a port when he does my surgery in October. My surgeon hasn't said yes or no, and I am not sure what to think about it. It seems like a bit step and I am not sure what that means about doing blood tests and IVs locally. I need to find out if the port will mean I have to go to the hospital for them.
All in all, I am having trouble posting since my brain is still in a low calcium fog and I am just not feeling well.
It was a really long hard week and I am hoping the week to come will be better, but I am not really sure.
Saturday, July 20, 2013
Sunday, July 14, 2013
Two more biopsies, no more answers
Since my last post I had had two more biopsies and no real answers.
My surgeon wants the central neck mass removed though he agrees it is likely a cyst and likely benign. It is affecting my swallowing and may be a thyroductal cyst, which can contain thyroid cells, never a good idea with a history like mine.
I have a CT schedule in a couple weeks.
Surgery is scheduled IY"H for October. I asked if we could wait until the children are back in school and my surgeon thought that was fine. The only "problem" is he booked me for 6pm. Since DH has to be with me, I can't see that working. 6pm likely means 8 pm which means children home at bedtime without news on how I am, without me, without their father, worried.
No.
I asked for an earlier time and hopefully it will be changed.
The surgery will require a new incision, a new scar on my already scarry neck. I am not sure why one more scar bothers me, but it really does. I am starting to feel like Frankenstein. I am sure no one else will notice though. My current scars have already faded and aren't terribly noticeable, but I am anxious about a new one none the less.
It will also mean 3-4 days inpatient. 3-4 days away from my kids. I will again have an incision on my neck, a drain to deal with, nurses giving me my medication when it is best for them, not for me, a bathroom I have to share and pain to bear.
I haven't told my mother yet. I am not sure if/when I will. Most of my friends don't know either.
I don't want to deal with other people's worry. I don't want their anxiety creeping in. I don't want to reassure them right now.
I know this is nothing compared to what I have been through in the past, but I know what I have been through in the past and don't want anything even remotely like it again.
My surgeon wants the central neck mass removed though he agrees it is likely a cyst and likely benign. It is affecting my swallowing and may be a thyroductal cyst, which can contain thyroid cells, never a good idea with a history like mine.
I have a CT schedule in a couple weeks.
Surgery is scheduled IY"H for October. I asked if we could wait until the children are back in school and my surgeon thought that was fine. The only "problem" is he booked me for 6pm. Since DH has to be with me, I can't see that working. 6pm likely means 8 pm which means children home at bedtime without news on how I am, without me, without their father, worried.
No.
I asked for an earlier time and hopefully it will be changed.
The surgery will require a new incision, a new scar on my already scarry neck. I am not sure why one more scar bothers me, but it really does. I am starting to feel like Frankenstein. I am sure no one else will notice though. My current scars have already faded and aren't terribly noticeable, but I am anxious about a new one none the less.
It will also mean 3-4 days inpatient. 3-4 days away from my kids. I will again have an incision on my neck, a drain to deal with, nurses giving me my medication when it is best for them, not for me, a bathroom I have to share and pain to bear.
I haven't told my mother yet. I am not sure if/when I will. Most of my friends don't know either.
I don't want to deal with other people's worry. I don't want their anxiety creeping in. I don't want to reassure them right now.
I know this is nothing compared to what I have been through in the past, but I know what I have been through in the past and don't want anything even remotely like it again.
Subscribe to:
Posts (Atom)
