Friday, July 29, 2011

Pre Admission appointment today

I decided that I had better try and compose this post before I fall asleep as it is almost 12:am and I've been up since 5:45am last night!

Today was my pre-admission appointment for my hip replacement surgery.  I did some blood work, a ECG, and saw a ton of other people.  I saw/spoke to a nurse who thoroughly went over my history.  She typed much of it into the computer, so I hope that means it'll be there for all doctors and medical professionals to reference the next time they want information.

Anyhow, I saw a pharmacist who went over my medications.  She told me which medications to take the day of the surgery, which ones not to take, etc.  That visit was pretty self explanatory.  I also went to a group meeting where another nurse and a physiotherapist spoke to us.  The physio spoke to us first.  She told us about some of the walking and showering aids we would need after discharge.  This includes a cane, walker, etc.  She also told us about the no-nos for after the surgery.  I was aware of most of this since I read the binder I had received a few weeks before.

I have to say that there was an elderly woman who was hard of hearing.  Man, was she ever a riot! Sometimes she was happy and funny.  At one point she and I made (accidental on my end) eye contact.  When we were looking at each other, she smiled, winked, and waived at me.  I nearly busted out in laughter when she did that...she's so funny.  But, she was very concerned with things costing her money-for example, walkers, canes, shower chairs, etc.  She was also upset that the nurse has given us so much information about the surgery.  By "so much information",  I mean the fact that the nurse told us about how we'll be stapled together, how the anesthetic will work, etc.  This nice old lady would just prefer to go to the hospital, get the surgery done, and be done with it.  I must say, her daughter or care giver or whoever the woman with the elderly woman was...she was a definite instigator in my opinion.  I'm gonna say it's mother and daughter.  The daughter knows how her mother is, so why let your mother talk and talk and talk for 5 minutes about something, especially when there are 5 other patients there in the meeting?  When the mother started CRYING, the daughter said to her "Don't cry".  Then the nurse said something like "it's okay to cry".  Then the daughter said something like "You know what? I know what I'm doing.  She's upset.  You guys give too much information".  Huh??

I used my spy cam to film a bit....



Oh well.

I also saw the anesthesiologist.  He was quite impressed with the fact that I'm on home hemodialysis and I do it myself.  I guess he had never heard of it before. He was especially impressed with the fact that I cannulate myself.  He asked me if I was a nurse or medical student and I said no.  He made me feel super smart :).

He told me about a spinal freeze (I think that's what he called it?) that'll be put in my back for numbing.  I'm always a bit scared about needles in the back for some reason.  When I asked him what kind of pain I can expect, he compared it to the needle that I would get in the mouth from a dentist.  Still scary to me!  He said anyone who can stick needles in their arms and has been through all I have been through could handle the needle in the back.  I told him that I had had an epidural before...and I was scared out of my mind.  The anesthesiologist had to actually give me a relaxing needle in the vein of my hand before doing the epidural.  It helped.  I also remember being pissed that my epidural stopped working about 1.5 days later because the nurse forgot to flush it.  I went through all of that and didn't even get the full benefit of the epidural!

Ahh, but I digress.  He said that the epidural needle is much larger than the needle that would be used for this particular surgery.  He said this surgery would make me numb from just under the chest all the way down to the bottom of my legs.  He said I had a choice of being put to sleep during the surgery or staying awake with minimal anesthetic.  There would obviously be a blanket covering my mid-section so I wouldn't be able to see into my flesh.  Um..i'll choose to go to sleep please.

After that, my appointment was done.  It was about 12:30-1pm ish and my appointment started at 7:30am. I came home, ate, did some work on the computer...and now I'm wiped!  So I apologize in advance for any spelling/grammar mistakes :)

Wednesday, July 20, 2011

A name has been found for the white spots on my face!

Hypergranulotic dyscornification.

Huh??

Basically, the skin isn't maturing properly.  That's what I took from what my dermatologist said to me.  She's going to take pictures of it to show to other doctors.

Anyone else have experience with this?? *deer in headlights face*

Tuesday, July 19, 2011

Oncology Appointment

Today was my oncology appointment.

For the other few times that I went to see my oncologist, I did not have to see a fellow.  I have to say...I was slightly disappointed when a fellow walked in.  I'm sorry, I know that hands on experience is the best experience.  However, when you have a chronic illness like me, and you see and talk to a million doctors like me, and you get asked the same exact questions time and time again...like me..it gets exhausting.

Anyhow, I spoke with the fellow who asked me the usual questions and did the usual checking of blood pressure, pulse, heart rate, etc.  He told me that my numbers were stable and I did not need any treatment.  That's always good news.

When my doctor came in, I asked her about the prospect of transplant. She explained to me again the fear of people getting transplant when they have cancer or cancer-like diseases.  Our immune systems help us fight off cancer, and if one receives a transplant, the autoimmune drugs taken obviously lower our immune systems.  So, theoretically, if I get a transplant and am on autoimmune drugs, that can lessen my ability to potentially fight off the cancer.

As I opened my mouth to retort, she then said "however, one could argue that you are already on autoimmune drugs and are doing fine..."

EXACTTTLY!  I'm already on prednisone, plaquenil (hydroxychloroquine), MMF..I'm totally on a lot of autoimmune drugs already.  My oncologist also went on to tell me that she has treated people with cancer-like illnesses who have had transplants (like liver, heart, etc.) and they did just fine. She also stated that if things should progress with me on the cancer front, she didn't think that the medication she would use to treat the cancer would conflict with the transplant.  At the end of the day, she's going to have to have a meeting with my nephrologist to see what the next step is.  Hopefully I'll be able to blog about a transplant soon...and hopefully the joy and anticipation won't be taken away from me again.

P.S.- today is one of the hottest days that I can remember...and I love every second of it. Don't worry, I covered up and wore sunscreen ;)




Monday, July 18, 2011

Flow on Lupus!

Hey All,

I have some new things coming up visually where my blog is concerned.  The first thing is..I registered a domain name for my blog! I have registered http://www.flowonlupus.com as my domain. My blogspot domain will still work just great for those who may have my blog bookmarked or something like that.

More goodness to come!

Saturday, July 16, 2011

chlorhexidine?

Yesterday my Mom and I went on a mission to find chlorhexidine. First stop: Walmart. The pharmacist told me that they had the type that is to be used as an oral rinse, but that was by prescription only. I'm assuming that the one that I want cannot be used orally.

Next, Shopper's Drug Mart. I went straight to the pharmacy. There were two people ahead of me. I waited and I waited. An older woman came and stood in FRONT of me. Huh?? I decided to be respectful since she was older than me. She saw that I was standing there but still went in front of me. She was not THAT old. Maybe mid-late sixties. After about 10 minutes, what I found out was the pharmacist's assistant expressed to the woman who budded in front of me that the pharmacist had called in sick. The assistant then went to the back where the medication is and started doing something. The woman who budded had asked the assistant whether she'd be able to get her medication or not. The assistant looked at me and told me that she'd just be a few minutes. Shortly after that, another gentleman came began to wait. Another woman who was waiting behind me decided to leave as the wait was too long for her.

When the assistant noticed the gentleman waiting, she said to him that it would be just a few minutes. The man said "oh, I want to drop off my prescription". The assistant came over, took his prescription, and started talking to him. She then started typing things into the computer.

HUH?? She did not even ASK me what I was waiting for, but since this guy was "just dropping off a prescription", she decides to help him first? She completely ignored me and she knew I was there first! I looked over to my mom who was dosing off on a chair.

"MOM" I said loudly. My mom woke up and looked at me. I told her, in a loud voice, that we were leaving. I looked back at the assistant and said "I've been waiting for 25 minutes and she goes and helps someone who came after me when she knows that I've been waiting for so long!" I turned around and looked back at my mother as I did not want to hear or see the assistant try and apologize to me and try to help me now. My mom then said "wait!" as in, wait a few more minutes for the assistant to help you. I replied with a stern NO and walked towards the exit. I left the store and stood beside the van waiting for my Mom who came out just a few seconds after me. She knew I was upset.

I hate being and feeling ignored like that. I sometimes feel like I am not taken seriously because I look young. I'm not-I'm a grown woman who deserves respect. In fact, even if I was young, I deserve respect anyways! If I was a young person standing there, I obviously have a reason to stand there...I'm not standing there to observe the scenery!

When we left and got home, I still felt very upset. I was upset that I felt mistreated, especially since my job's primary function is customer service. I also felt upset that I perhaps overreacted. I didn't use any curse words, but I did make it clear that I was very angry. Rightfully so I suppose, as I just wasted nearly 30 minutes being ignored, but I still could have acted better. It's just that...two people went in front of me. I'm not invisible.

Well I just wanted so share that as it upset me so much. I think if I was having a better day, it wouldn't have upset me so much. Nothing in particular happened to make me upset earlier in the day...it was just...one of "those" days.

Needless to say, I am yet to get my hands on any chlorhexidine.

Thursday, July 14, 2011

Double Time!

I'm sitting here feeling unmotivated to do homework, so I thought I'd take a break and blog. I know that I have to work twice as hard to not just finish my courses on time, but to finish them EARLY. I am taking 4 online courses with two of them ending in August and the other two ending in October. Only 1 of the two courses ending next month have an exam. That final exam is actually the same week as my surgery. That said, I want to finish everything early and do that exam bright and early on Monday morning.

It's kinda weird how nervous I feel. For someone who has been bed ridden before for what felt like an eternity but was only actually several weeks, it's THAT that scares me most. Everything associated with me not being able to do things myself and not being able to move around freely scares me. My Dad already got me a raised toilet chair thing. That way I don't have to bend all the way down to sit on the toilet.

I remember being in the hospital and hating that toilet chair. It was never there for me, it was usually there for the person I was sharing a room with. That said, whenever a nurse would take the person I'm sharing a room with to the washroom, they'd bring the toilet chair to her bed, sit her in the chair, wheel it to the toilet so she could use it, wheel the chair back to the woman's bed, then return the chair to the toilet and LOCK it there (there was a little lever on the bottom wheel area that can be locked). I never understood why they did that. Sorry, but my bum doesn't want to sit on the toilet seat that a stranger bum was just on. And, since I'm in the hospital, I'm probably weak and/or tired, so I don't want to have to find a way to bend down to unlock a toilet chair to move it out of the way. If they need to wheel the chair over to her so she can sit on it...why not just leave the toilet chair beside her?? **end rant.

My all day pre-admission appointment is two weeks from today. I have a couple of documents that I need to have my doctor fill out...I suppose it will be my nephrologist as my rheumy is gone! :(

The binder I received is plenty detailed. My favourite page is below:

How to avoid becoming septic 101:




Tuesday, July 12, 2011

Wow..that was fast.

Today was my ortho surgeon appointment. When I got there, I spoke to the fellow first. He was quite nice. He asked me how I felt, and if things felt worse, etc. I told him about the issues with my knee and hip. He also looked over the x-rays I did last week.

When he called the actual surgeon in, the surgeon told me about hip replacement surgery after I told him that I thought that my hip was worse than my knee. He then asked if I wanted to do the hip replacement surgery and I told him that I did.

I signed some papers with the secretary and received a binder full of information. Wowzers. There are a lot of rules. For example...I'm not allowed to cross my legs! Yikes. The date is in August. Unfortunately, it is one day before my Dad is going to take the kids in his program to camp! He might leave the camp early. I'd hate for him to do that on my part, though. I'm going to see if there is anyone else around who can come and spend the day with me. My Dad will be there for me the day of the surgery all day, which is a Wednesday. My sister can perhaps hang out with me during the day before she goes to work on the Thursday my dad leaves...and my Mom should be there for me in the evening. My sister can maybe pick her up. Same with Friday. On Saturday and Sunday, my Mom is off, and my Dad is home again on Sunday. I'm sure it'll all work out. Mind you, this is just me being spoiled. I mainly want someone there to bring me non-hospital food! *is embarrassed*.

I'll be admitted for 4-5 days or so. Physiotherapy will begin one day after surgery. Ugh! I'll have to do in-centre, 4 hour dialysis! *gag*. Can't they wheel a dialysis machine in, set it up, and leave it beside me and let me dialyze myself overnight? Yeah I'm guessing I won't wanna lift a fork to my mouth, let alone cannulate myself.

So, I'll connect with you all again closer to the date. I'm kinda nervous...mostly about the physio and limitations I'll be under after the surgery for about 3 months as opposed to the surgery itself. Eeep!

Oh, and I'm totally cancelling this hip replacement surgery if anything comes up in terms of kidney transplant. Please help me pray that a transplant date will be ok'd and will come up soon, necessitating the cancellation of this hip replacement surgery! It's not that I don't want the hip replacement surgery, but I obviously have priorities to worry about here! Hehe
 
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