Thursday, June 30, 2011

Rheumy and Nephro appointments

What a long day I had!

The day started off with a visit to TWH to see Dr. Fortin. It was sad because I knew it would be my last appointment with him before he headed off to Quebec. The appointment was good and there are no changes where my medication is concerned.



We discussed my prednisone. Right now, I'm on 5mg daily. Passed experience seems to show that I cannot be without prednisone or else I'll flare. But, that was several years ago and perhaps it was tapered too quickly. Dr. Fortin kept me on a small dose of prednisone because he did not want me to flare up right before a potential transplant, something that has occurred before.


But now, with this myeloma diagnosis, he feels that the transplant will be on hold for quite some time, and therefore wonders if it is worth it to perhaps look at dropping the prednisone even further. This concerns me a bit. It kind of...solidifies the fact that my transplant would be on hold.

After saying our goodbyes, my father dropped me off at TGH for my nephro appointment. At that point, it was about 11am and my appointment was not until 1pm. I quickly ate a bagel from bagel stop and a soy latte from starbucks. I was quite hungry as I had to fast for my bloodwork earlier. I decided afterwards that it would be a good idea to do my x-rays for my up and coming appointment with the ortho surgeon.

I went to the medical imaging department, checked in, and got changed. After I got changed, I was told that my xrays could not be done. I had to do them at TWH (where I just was for my rheumy appt) because only that hospital could produce physical xrays as opposed to digital ones on the computer. Since it was a possibility that I would be having surgery, the surgeon would need to bring these physical xrays into the OR with him. The technologists told me that she had called TWH and the line up for xrays was not long.

Damn. So I put all my clothes back on and ran outside to catch the hospital shuttle bus back to TWH. When I got to TWH..it was the funniest thing. There were about 30 people waiting for x-rays. It was already 12:10pm. I'd have to have my xrays done and be outside to catch the bus by 12:45pm as the shuttle buses come every 15 minutes. I told the secretary this when I checked in and she said she'd expedite my wait. She then went on lunch.

I waited and I waited. It was now 12:40pm. The secretary finally came back. I told her that I was leaving to go to my appointment at TGH, and I asked if she could give me some sort of priority when I came back since I'd have to come ALL the way back here again. She seemed surprised that I hadn't been called yet. She went somewhere to speak to someone and then rushed me in. She asked me to give her the phone number to the doctor I was going to see so she could call them and tell them that I'd be late, so I did.

I did my xrays and was done by 12:55pm. I threw my clothes on so quickly that it was only a coincidence that I put my clothes on correctly. I limped/ran to where the shuttle bus was. I could see it parked as I quickly limped down the long hallway to the doors. I made it.

I got to my appointment about 15 minutes late. I saw the fellow first, then Dr. Richardson. I asked him about his thoughts on transplant. He said that he and my oncologist would sit down and talk about it after my appointment with her later this month. He reiterated the story about another patient that he had who had abnormal proteins in her bone marrow and it did not develop into anything. That is certainly encouraging.

I went outside and my Dad was there with a slurpee and beef patty. With all the running up and down that I did, the slurpee went down very smoothly. I went home and took a much needed nap!

Next appointment: next week- ortho surgeon! Will I be able to get this surgery so I can stop limping around? We'll see what he says...

Wednesday, June 29, 2011

Rheumatology and Nephrology appointments tomorrow

Tomorrow i'll be going to my rheumatology appointment at 9am, then I have my nephrology appointment at 1pm. Somewhere in between there, I'll get my x-rays done for my up and coming ortho appointment. Tomorrow will be my last appointment with Dr. Fortin.

I'm pretty sad about that. Dr. Fortin is such a great guy. I was going to make him cupcakes, but the person who was going to help me is not able to help anymore..and taking on the making and decorating of the cupcakes was just too much of a project for me and I'm pretty sure I wouldn't make it.

In other news, I used my aeroplan points to get a samsung digital camera back in November. I did not really get to use it as the opportunity never presented itself. So, I wanted to use it a couple of weeks ago as my friend was getting married. I noticed that, after recording a "test clip", the there was a loud "buzzing" sound when I zoomed in and out. I told samsung and they told me to send it in for service.

I received it back on Monday. The repair order in the box stated that everything was "to manufacturer's specifications". Huh?? So I called them back and they contacted the repair centre. I was told that a "senior repair person" had looked at my camera and was convinced that there was no real problem. I then said "ok, so basically what you're saying is that I'm stuck with a camera that doesn't work properly?" The gentleman I spoke to then told me to upload a video to document the problem, so I did. You can view the video here. Clearly not normal! I emailed the video to Samsung as instructed.

After emailing it, I received a call the following day where they did in fact agree that this was not normal. I received a UPS shipping label and will need to ship it out again. Hopefully it comes back fixed this time, even though the wedding is now over.

That's all for now, I'll report back with what my rheumatologist & nephrologist says.

Thursday, June 16, 2011

I Would Never Leave You

I had a dream two nights ago and I told my Mom about it last night.

In my dream, my Mom, myself, and my brother's girlfriend were supposed to go to Montreal. Our flight was at 6pm. My mom was in the kitchen cooking (specifically, she was chopping red peppers). My brother's girlfriend said that she had to go to the Rogers Centre for some reason...she had to pick something up. I agreed to go with her, but let her know that it was already 4:30pm and we had to get to the airport soon. She told me not to worry. My Mom said she would meet us at the airport.

We got to the Rogers Centre at around 4:45pm or so (not really possible from my house...it would take at least 30-45 minutes, depending on traffic). I told my brother's girlfriend that we needed to leave...we were going to miss our flight. She told me not to worry. Finally, at 5:15pm, we got into her car and drove to the airport. We got to the airport at 5:30pm (again, not possible-too far).

We went to the ticket counter- we were too late. They refused to let us in and they told us that we were too late for the flight. The flight was leaving in half an hour, and by the time we got through security, got checked in, etc., it would be too late. I was crushed, especially since my mother was already through security and stuff and was already on the plane.

That was the end of my dream.



My mom responded by saying "Well, I guess that particular journey wasn't the journey for me." I sat there, sipping on my slurpee, pondering that statement. My mom continued by saying "Besides, that would never happen. I would never leave you. I would never get on that plane without my baby. Never, never, never".

My mom and I were in the living room. I was sitting on a rocking chair and she was sitting on the floor in front of the couch. I looked down. I didn't want her to see me cry. What she said triggered something in me and it touched me deeply. I don't know how to describe it.

I love my parents.

Wednesday, June 8, 2011

My oncology appointment

First, let me start off by saying that today is the hottest June 8th in the history of recording temperatures in Canada. Seriously...it's hot.

Yesterday was my oncology appointment. Man, I really like my oncologist...but man are her wait times long! My appointment was scheduled for 11:30am. I got there at 11:15am. I got called at 12:30pm to sit in the smaller room where the doctor comes to talk to you. The doctor came in at about 1:20pm. Man or man.

Anyhow, the good news is that my blood work has not changed...meaning...things are stable and not getting worse. I'm pretty glad about that...but still wondering about transplant stuff. OMG, as I typed this, I just remembered that I forgot to ask the doctor about her conference in France and speaking to the mayo clinic! I'm dumb dumb dumb! I'm going to look up her email address online and see try to email her.

Anyhow...that's where I'm at right now. Nothing new...but as they say, sometimes no news is good news. I'm gonna go organize my dialysis supplies room a bit in preparation of my delivery tomorrow.

Sunday, June 5, 2011

Knee/Hip Replacement

My appointment with the oncologist is on Tuesday...wish me luck.

I was just speaking to another loopy about her hip replacement surgery. I've seen an ortho doctor about 3 or 4 different times over a couple of years. He has suggested that I wait until the pain in both my knee and hip become unbearable before doing knee and/or hip replacement surgery. I agreed, assuming that "doctor knows best". I spent that last week or so limping around the house because of severe pain in my right knee.

This got me wondering. Why do I have to suffer through varying levels of pain until my knee and/or hip absolutely collapses before something can be done? Man do I miss the days where I could grab a couple of dumbbells and do some squats or something. I miss the days where I could ride my bike around and not worry about my knee or hip.

Anyhow, while speaking to Sam, she told me about her hip replacement surgery and how much better she felt after it. She can do anything and everything she wants to do. She feels the way she felt even before the need for surgery arose.

I know I deal with an energy problem, but exercising and being active really appeals to me. I think it might be time for me to call the ortho, set up an appointment, and let him know that I REALLY want to discuss this knee/hip replacement thing.

 
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