Monday, November 28, 2011

Busy!

I know I haven't posted in a little while.  I'm just starting to try and get back to normal. I've resumed going back to work for a few hours a week just to get my "feet wet".  It's really great.  I miss my co-workers. What I really miss is that feeling of being productive..you know?  That feeling of going out and doing your job and knowing that you did something productive that day.  I miss that.  I'm resisting the urge to just jump in with both feet and take too much on all at once.  It's really difficult for me.

In other news, I'm hoping that i'm slowly but surely inching closer and closer to transplant.  My oncologist has finally spoken to the transplant nephrologists about my case.  The transplant neprologists will get together later this week and discuss my case altogether.  This transplant has eluded me for too long..let's get on with it! :)

Friday, November 18, 2011

Up early for Nothing

Today was an early morning.  I woke up at 6:15 today so I could get to the hospital early.

My father was going out of town today, so he offered to drive me to the hospital for my appointment but I would need to take the bus home.  This worked out well for me since it was my plan to go and visit a friend in the dialysis unit.

After visiting with my friend, I went up to my appointment.  Much to my chagrin, the doctor's secretary told me that my appointment wasn't that day..it was the following Thursday.  The doctor wasn't even there!  What a terrible waste of time!

I went downstairs to the dialysis unit to check with the secretary there.  She showed me the email: it said the appointment was today.  Meh! Not impressed! (Georges St. Pierre voice).

The trip to the hospital wasn't a complete loss...I got to hang out with my friend while she dialyzed and I got to catch up with all of the nurses and hemo assistants that I haven't seen for a while.

Tuesday, November 15, 2011

Long Day

Today was a long and eventful day.

My day started out with a trip to my oncolgist.  I had to take the bus and subway today as I did not have a ride. My hip hurt a little, and my knee hurt a little bit more, but it wasn't bad.  My first stop was to the blood lab to get some blood work done prior to seeing the doctor. I waited for about 30 minutes for my number to be called.  When my number was called, I got up and collected my purse and a bag I was holding.  When I turned around, I saw another woman, who I had seen come in way after me, going towards the blood tech who had called the number out.  She was clearly trying to pull a "fast one" and take my spot as she did not see me picking up my stuff to walk over to the blood tech.  When he saw the woman walking towards him, he looked at my hospital card and said my name.  That's when the woman knew "the jig was up".  Nice try!

Whenever I have to go to the hospital for an appointment, I usually treat myself to Second Cup or Starbucks, and that was no different today.  I went to get my Starbucks and a quick bite to eat.  I knew I wouldn't have to rush that much.  I finally got my blood taken at around 10:00am, and my appointment time was 10:15.  This clinic usually runs slow...not to mention the time it might take for my blood work to come back.

So after I got my Starbucks and snack from Tim Hortons, I went to the hospital's pharmacy to order my aranesp so that it would be ready for pick up by the time my appointment was done.

I went to my appointment at the hospital across the street.  I sat down, drank my soy vanilla latte, ate my donut, and read the paper.  I knew I'd be waiting long so I might as well make myself comfortable. Much to my surprise, they called me in at around 10:45am.  Not a long wait at all.

When I saw the doctor, everything was fine. My hemoglobin was up to 111 (or 11.1) which is great, since it was 95 (or 9.5) two weeks ago.

After my appointment, I emailed my transplant coordinator Julie from my blackberry so we could meet up and chat. We chatted for about an hour.  It's always great chatting with her.

After this, I decided to get on the shuttle bus and head to twh, as it's closer to home.  When I got there and headed for the bus stop, I got outside just in time to see two women, and one of them looked like she just hit the ground! The first one was on the phone.  I was quite far away and I cannot run, so I walked towards them.  I asked the lady on the phone if everything was ok.  She smiled and said thank you.  I started to walk away...but I (obviously) didn't believe her when she said everything was ok.  So I came back and asked her if she needed somebody called.  She said yes. So I headed inside as did a security officer.  There were some doctors and other medical staffers in the food court, so we called them.  They dropped/abandoned their meals and ran outside.  One of them grabbed an oxygen tank and mask from who know's where and ran outside also.  In total, there were about 15 medical professionals who came outside.  As they began attending to the young lady on the ground (who I now assume is the other lady's daughter) I felt much better.  As the conversation continued, it became apparent that the young lady on the ground had some medical problems as well as perhaps developmental problems, and this was not an isolated incident-she had had a seizure.

Just then, the streetcar came.  I headed for the streetcar, especially since the medical staff was now with the young lady. I did not want the streetcar to leave without me, so I asked another gentleman who was in front of me to hold the streetcar for me, which he did.  Very nice!  He also offered me his seat. Double nice! I got to the subway, took my train to my nearest station, then headed to ground level to take another bus home.

So that was my day...aside from being pushed around by a man at ground level.  The bus was coming so he thought it would be a good idea to try and shove me out of the way so that he and his wife could get on the bus before me.  What the what??  I shoved him back with my elbow and did not allow him to get in front of me. He kind of squeezed his way to the front door of the bus, which meant he was going to get on the bus before me if the bus stopped in it's usual spot.  Luckily for me, the bus driver opened the back door as there was a ttc employee at the back of the bus waiting to see our passes in order to let us in.  So I ended up getting a seat anyways. Some people!

Well, that was my day.  Crazy, huh?

Up for tomorrow-Work telephone conference call and a dialysis tech will visit my house for a special disinfection of my machine.

Sunday, November 13, 2011

Random Bruise

Ouch!

Sleepless Nights

Sleepless nights.  I've had a lot of those lately.

I just have so many things going through my head that I often find it difficult to sleep.  The end of my college career is drawing near, which means it'll be time to start job searching.  In fact, as I wait to go back to work now that my hip is getting better, I've been looking at the job postings at my work...basically just to see what's out there.

I'm afraid that I won't be able to keep up with a full time job.  I'm afraid that I'll get too tired, or I'll get sick..or the chore of doing dialysis all the time coupled with going to work will zap the energy out of me.  I'm quite lucky in that I have a wonderful and supportive family who helps me out a lot.  But eventually..I imagine that I'm going to have to get to a point where I'm self sufficient. That scares me.

But, my thoughts that have been causing me these sleepless nights go even deeper than just my future career.  First and foremost...it's my health.  The transplant team is still in talks with my oncologist in regards to my potential transplant.  The transplant nephrologist has emailed my oncologist a couple of times but she has not answered him yet.  I imagine she is quite backlogged as she was away for a week or two.  Luckily I'm seeing her this week for a follow up appointment so I'll be able to talk to her then.

I guess one of the main concerns the transplant team has is the potential repercussions of the transplant medication I'll have to take after I receive a kidney.  Some of those medications could possibly trigger or "activate" my currently "smoldering" myeloma.  If it does...then that's a whole new set of problems that I'd have to deal with.

So what do I do?  Forget about a transplant altogether because of the slightly increased risk of triggering these myeloma symptoms? If I do that...I'm just being honest here...I'd be pretty miserable.  Don't get me wrong- in spite of the work that goes into setting up, stripping, and maintaining a dialysis machine, it's much better to me than the alternative, which is going to the hospital for treatment.  I don't think I can do that anymore. At the same time, I feel like I have a ball and chain attached to my ankle.

I've missed out on a lot in terms of vacationing with friends and such because of dialysis.  The last thing I want to do is inconvenience my friends by having them drive me to dialysis units in different countries.  What's more...It can be scary going to outside dialysis units.  Every unit has their own way of doing things...and their ways may not be something that I'm used to. And what's more...whenever I do "in-centre" dialysis, I'm pretty drained afterwards.  I'd have to go back to the hotel, eat, and take a nap.  I don't want to put that on anyone.  Not to mention..dialysis in a different country is pretty expensive.  When I went to Florida once...I got a "deal".  I paid $300 per dialysis session. The actual cost was more than $600 USD per dialysis session.  OHIP only reimburses $210 CAD.  It's a huge cost to bare in my opinion.

In spite of the risk...having a kidney transplant is something that I want.  I've young...and I kind of feel like I've lost a part of me in terms of the carefree person I used to be.  Bike riding for hours on end throughout the city with my brother and his friends or me and my friends...as I mentioned before, hitting up vacation spots...I've never been able to experience one of those "let's just go to Montreal for the weekend" or "let's go to the States for the weekend to shop" adventures...

I just want everything to be..."right", you know? It's been so long that I'm not even sure exactly what that is.  All I know is that my "right" does not include being hooked up to a dialysis machine for 40 hours a week.

I don't even know if what I'm writing is making sense anymore, so I think I'm going to lie down and try to get some shut eye.  I hope I can.

Thursday, November 10, 2011

Notice anything new about my blog?

Yes, my new blog design is finally complete.  I'm pretty happy with the results.  There are still a couple of "tweaks" here and there that need to be done, but other than that, it's done.  What do you think?

Free from Physio?

It's been a short while since I updated!  I've had a nagging stomach ache for about the last week that I just can't seem to shake!  I went to physiotherapy this morning.  My mother dropped me off and picked me up too.  After physiotherapy, we went to Walmart.  Much to my delight, peppermint tea was on sale.  I've been told before that Peppermint tea is good for an upset stomach...so I'll give it a try.

Speaking of Physiotherapy, I saw my ortho surgeon last week.  He assessed me and said that I do not need physiotherapy anymore! Yay! But wait...didn't I just say that I went to physiotherapy today??

Let's be honest..I don't feel like you can ever have TOO much physiotherapy if it is still being beneficial and you are not hurting yourself.  I've gone to workout classes for this first time this week.  I've done two classes. They are difficult since I have literally zero muscle in my legs.  The class is half an hour with exercises that involve both sitting down and standing up.  I feel a bit of pressure to keep up...since the next youngest person after me is probably 55-60 years old!  But then...it's almost like having a personal trainer. Having a personal trainer motivates you to push yourself to your limits..and this class does too.  I'll probably go another couple of times before I stop.

I think the time for another vlog is creeping up.  Hopefully I can get over this darned stomach ache soon so I can make one!
 
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