Where does time go when you're focused on the details of your life? Seriously -- I can't believe it's the middle of June already.
I've been away for a while, so let me see if I can catch you up.
The day after I went to see the Indiana Jones movie, I woke up to two disturbing discoveries: my laptop did not recognize it was hooked up to the cable modem, and my VCR/DVD player would not turn on. I was not happy. I have not been able to figure out how to fix either one. We had a pretty decent line of storms come through the night before, and my friend William thinks I may have experienced a surge through the cable outlet (not the electrical since the laptop and VCR/DVD are on separate surge protectors and other items plugged in with them are still functioning properly).
So, I've been having to do all my Internet from the lab, thus the lack of blogging. It's hard to do fun stuff in the place where you're supposed to be working.
The week before last, I had some routine blood work done by our campus's student health, and my hemoglobin (Hb, the protein that carries oxygen in your red blood cells, RBCs) and hematocrit (the volume of RBCs relative to total blood volume) both came back "extremely low" -- as in, my Hb was 8.2, and they start considering giving a blood transfusion at 8.0. I was told I needed to go to the ER "right away."
To say I was not looking forward to that is an understatement. The short version is this: I got there at 7:30 p.m., and I left at around 6:00 a.m. All they did was stick me seven or eight times for an I.V. they never used, they ran the same tests as student health and got the same results, they told me to take iron pills, and the head nurse tried to bully me.
When I was finally taken back to a curtained bed (after a four hour wait), the triage nurse told me I needed to get in the bed, strip down, and put on their crappy little gown. I looked her full in the eye and said, "I'd prefer to stay clothed and in my wheelchair." I then explained why:
1. The beds are extremely uncomfortable because they hit every pressure point I have and then find new ones. After about two hours, I need painkillers because I hurt so much, and let's just say I'm not talking about Tylenol or Advil. (I wanted all my wits about me because I'd dealt with this ER and its pushy nurses before -- remember when I had my blood clot diagnosed in November?)
2. I knew they were going to want blood, and maybe to start an I.V., so I needed to keep myself as warm as possible so my veins would be dilated and near the surface. (I'm a hard stick, and I know a few tricks to facilitate the blood drawing.) That was why I was wearing a hoodie when it was 85F outside.
What I didn't say was that it's easier for them to treat me like a mindless cripple if I'm in the bed. I'm more defenseless because I can't just leave, and some medical folks feed on that like shark on chum.
The nurse shrugged her shoulders and left, but very shortly thereafter the nurse administrator came in, again trying to get me stripped and in the bed. I again said I preferred to stay in my wheelchair and why.
Nurse Admin: They may need to draw blood and start an I.V.
Me: I'm certain of it, but I prefer to stay in my chair.
Nurse Admin: They can't do either of those things unless you're in the bed.
Me: That's not true. I've had blood drawn dozens of times while sitting in my chair, and I've also had I.V.s started.
Nurse Admin: If they have to give you blood, you'll have to be admitted.
Me: I'm aware of that, but I still prefer to stay in my chair. If I'm admitted, I'll change and get in the bed.
Nurse Admin: If your I.V. is already started, you won't be able to change.
Me: That's not true, either. You can saline or heparin lock the I.V., disconnect it, and then I can change.
Is it just me, or do some nurses get really peeved when you know their procedures as well as they do?
Battle won by me. I got to stay in my chair.
After spending all night in the ER just to be told to take iron pills and see my GP as soon as possible, I went home and got about three and a half hours of sleep before my bladder woke me up. I said screw it, got up, ate, and went to the lab to work. Since it was Saturday, it was deserted in my building, and that suited me just fine since I don't deal well with other humans on three and a half hours of sleep. I changed my plane tickets home from the 23rd to the 10th.
After a busy couple of days finishing measurements (about two hours in the lab on Saturday and about five on Sunday), cleaning my office desk to see what papers and books I needed to pack, and actually packing (one suitcase full of research material, one of clothes, medicine, food for Reba, wheelchair battery charger, and a couple of fun books), I headed to the airport. Everything went so smoothly -- too smoothly -- that I should've known something was going to happen. We got on the plane, taxied, and were held on the tarmac due to weather in Houston (my connection between NO and Wichita). Thirty minutes later, we returned to the gate because Houston had closed due to 50 m.p.h. winds and hail. Everyone but me deplaned -- I didn't see any reason to go through all the transferring if Houston reopened in another thirty minutes. Four hours later, I decided to get off as everyone was finally allowed back on the plane -- it was 4:00 p.m., I hadn't peed since 10:30 a.m., and I knew there was no way I'd be able to hold my bladder until a 9:00/9:30 p.m. arrival in Wichita. I went home, slept, and tried again the next day. I made it then, and now I am at the folks' until 11 August.
On Thursday, I saw my doc who was shocked the ER doc didn't do more than take my blood. He sent me to the hospital lab for more blood (do I feel like a vamp donor yet?), gave me some hemocult cards to smear with poo to check for intestinal bleeding (at least I didn't have to be probed), told me to double up on my Prevacid (I guess to try to control acid production in case I have an ulcer?), and said I might have to be scoped at both ends (oh joy!). He also wrote me a rec for physical therapy at my request. My lower back is becoming progressively more swayed and compressed, and it's causing issues. I know no one will want to do surgery for it, and I don't want to start down the painkiller route just yet, so I've asked my PT Melani to teach me stretches that I can then teach my attendants to stretch and decompress what I can.
That's pretty much it for now. G'night.
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2 comments:
That's pretty much it, huh?! Sounds like TOO much! Glad you made it home OK, despite the delays! It irritates the hell out of me that the OR in NO treats you like that! I can't imagine treating patients like that. Why go into nursing if you have no compassion for your patients?!
Thanks for the detailed description. I know my hemoglobin and Hemocrit are both very low, but I didn't realize that it was iron or blood. And they say you NEED blood, but then take blood three times and do nothing? Super. THanks for the info on the IV's - I have noticed with specialist they hate you knowing stuff and so rattle it off in hopes you are baffled and when you ask a question becuase you do know, then they are ticked off. I guess nurses use "information bullying" or "policy bullying" - which is strange becuase like many techs are really good but some hardly speak at all.
I remember from one ER experience many people came in, asked questions (often the same questions) and left, never telling me who they were. How do you even tell who the nurses are verses the student doctors?
Sucks about the laptop and the modem as well as the DVD player.
Everything you say about staying in the chair and doing what you need to be a good stick makes sense. Why do these nurses think that THEY are better versed in you and your condition than you ARE? Come on, do they think this is the first time you have been to a doctor? You can't have SMA without going round and round the medical block I am guessing and have probably put in more "hospital" hours than some of those nurses.
I also can't believe, ALL night in the ER just to take iron. THIS is why I HATE going to the hospital. No rest, I have to recover for the next several days and usually it is handed back to "go see your GP/specialist".
What do you mean by issues? Can you email me, regarding your lower back or is something you don't want to talk about. Also, what kind of degrees a year are occuring or is it slower than that? Sorry, I am nosey but I feel like I can't really understand all of you becuase I don't understand all of the choices and decisions you have to make, which are sometimes based on your condition.
Or rather, do you ever feel, like I do, that people just don't "get it"? I want to "get it."
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