Wednesday, April 30, 2008

The Reason I'm Seeing a Plastic Surgeon

I was looking through all of the pictures on my hard drive and I noticed a picture that I must have taken either late last year or early this year that I had forgotten about. It's a picture of my stomach, meant to be a "before" picture. If you've been reading my blog, then you might know that I have an appointment with a plastic surgeon on May 8th.

I want to see a plastic surgeon in hopes that he/she can possibly reconstruct/fix the scar on my stomach. After having colostomy surgery, (to make a really long story super short) the staples that were being used to hold my wound closed after my first surgery were removed too early. This resulted in my wound opening up almost immediately after the staples were removed. In order for it to heal properly, it had to be packed with gauze everyday then bandaged. I'm happy that it healed and I didn't get an infection, but I was left with another prize: a grotesque scar.

When I saw the picture I took, I figured: well, I must be in the mood to post grotesque pictures of myself today (note the picture of my severely broken out face from 2006 below). So, why not post this one now? My reason for taking the picture in the first place was so that I could compare it to how it would look if/when I have surgery to get it fixed.

Note the picture below. The scar on the right of the pic represents where my stoma was closed up. The scar right down the middle is where the staples were. As you can see, I no longer have a visible belly button. It's in there somewhere...but because of the way my stomach healed, you can't see it in this picture. When the wound first opened up and I looked at it, I thought that my entire belly button had torn too.....but it didn't.

I guess we'll have I'll have to wait until at least May 8th so I can speak to the plastic surgeon. As I may have mentioned before, I was told that such a surgery might not be covered by OHIP. I can't imagine WHY IT WOULDN'T, as this, in my books, was clearly a case of the staples being removed too early, especially taking into consideration that I'm on prednisone.... oh well...we'll see and I'll obviously post the results of my plastic surgery meeting after the date.


YIKERS!!




RX for Brown Skin- Day 1

I just received my RX for brown skin kit in the mail. It came in a nice box as pictured below:





So as promised, I'm going to take pics of my face to see the progress. I've decided that I'd take pics on a weekly basis.

This is Day 1:








Now, I must admit, that my day 1 pic isn't nearly as bad as my skin looked at its peak of horribleness, which was in 2006. My skin was out of control.....and I just can't believe that I'm about to post a pic of my horrible skin as it looked in 2006:

AAAAHHHHHHH!!!!!




It has obviously gotten MUCH better, but as you can see from the day 1 pics, it still needs some work. The other methods that I've used have obviously helped me a lot, but my skin is still not completely clear, nor is it practical for me to spend huge amounts of money to get this rectified. I hope rx for brown skin will be my cost effective way to clear skin. Stay tuned for day 7.

In other news, I received my sample sizes of kms minerals in the mail. They came in little baggies. While I was more than pleased with the service I received from kms minerals, and also the shipping time, unfortunately both colours that I received, cappucino and chestnut, were both too light for my skin tone :-(

Stay tuned for the other make up brands tests. I've also invested in some other mineral make ups that I've seen on the internet that have sample sizes. I'll speak more about those when they arrive in the mail.

Saturday, April 26, 2008

No Closer to Knowing!

A few days ago I emailed my doctor, Dr. Fortin, to ask if he could take a look at my x-ray results and see if they showed anything where my ankle was concerned. Unfortunately he told me that there were no significant changes within my x-ray, and if it was in fact some sort of inflammation or tendonitis it would not show up on the x-ray. He said that we would continue to keep an eye on it, and if it continued to be bothersome that I should come and see him earlier in clinic. Nuts...I was kind of hoping that the x-ray would show SOMETHING so that we'd know how to proceed. Well, like he said, we'll just have to wait and see.

A few days ago, my fellow Lupus friend Nicole sent me a youtube link via facebook. This youtube link has several doctors and hospital workers discussing the impact that some of the work and research done through UHN (University health network, which includes Toronto General Hospital, Toronto Western Hospital, and Princess Margaret Hospital) has made globally.

Watching the video was great, especially since a few of my doctors are in the video.

Dr. Irish - I saw/met Dr. Irish back in November or so of 2007. I met him at Princess Margaret Hospital when I went to the ENT clinic to have the cyst that had developed on my inner lip looked at. Another doctor removed the cyst, but Dr. Irish was the one who basically checked my lip after the cyst was removed to make sure it was removed properly. I also came back about a week later to see him, which is when he told me that the cyst in my mouth was checked and there wasn't anything cancerous within the cyst (Thank God...!) All this time I thought he was an ENT doctor....I didn't know he was an oncologist.

Dr. Okrainec - Remember the horror stories I discussed concerning having a perforated bowel? Well, the amazing (and very young looking) Dr. Okrainec is the doctor who was paged to come to the hospital and perform the emergency surgery on my intestine. He is also the doctor who closed up my colostomy about 6 months later. He is also the doctor who blushed bashfully when I called him "my hero" a few short days after he performed my first surgery.

Dr. Chan - Dr. Chan was the doctor who followed me when I was doing my home hemodialysis training. Dr. Chan is great because he's so attentive. He is also the doctor that suggested that I do the gastric emptying test to see if they could try and figure out why I was having so many stomach problems while on dialysis. Great guy and he's just super easy to talk to.

So below is the video. Look for the above three doctors when watching! :-)

Thursday, April 24, 2008

Taking Some SKIN-itiative!

I'm sure that many people out there suffer from various skin problems. I know it's not just a Lupus thing, but what I do know is prior to me being diagnosed with Lupus and being put on a plethora of drugs, I had pretty good skin. In fact, everyone in my family has great skin.

While I still do get the occasional breakout here and there, my skin has definitely come a long way. My skin used to be completely out of control until I saw a dermatologist. At the dermatolgist's office, I underwent blue light therapy. For me, it worked pretty well and brought my acne down quite a bit. I was also put on some topical acne medications: tazorac and benzamycin. They helped, but they also dried out my skin. This concept of "dry skin" was foreign to me as I have oily/combination skin. Aside from that, each blue light treatment was $60, and I had to do it weekly. I want to avoid having to go down that road again as it is quite expensive...and simply not practical to pay such a cost frequently. But i'll admit..at that point, I was desperate.

I've always looked for skin care treatment that would be good for me. My current face cleanser, tersaseptic, is awfully drying. I know I have oily skin and the ultimate goal is for my skin to not be oily, but I also don't want my skin to be partched, flakey, and downright painfully tight.

My sister sent me a yahoo internet link the other day for a skin care line tailored to african american skin. The name of the product is rx for brown skin. It was created by an african american dermatologist. I thought it would be a cool idea to give it a try, so I went to the rx for brown skin official website. Much to my chagrin, this website doesn't deliver to Canada. So I searched around some more and I found out that the product line is available on the Sephora website. I called up the local Sephora to see if it was available in stores in Canada, which it isn't. I went ahead and ordered the Bright and Clear skin cleansing regime off of the Sephora website. That was just a few days ago, and since it's coming from the states, I am yet to receive it. I'll definitely do the before and after pics so we can see any progress. For updates, please click on rx for brown skin in the label cloud to the left.

Makeup is another big thing for me. I've used many a makeup and many have made my skin woes worst. After doing some more googling, I came across a much praised mineral makeup called Everyday Minerals. Now for me, buying makeup for the first time via the internet has always been a sketchy thing. How can I possibly match the colour to my skin without the possiblity of choosing the wrong colour and end up having useless makeup left over? Well, Everyday Minerals gives you the option of ording a sample kit! The sample kit lets you select 3 different foundation colours, a blush colour, and a concealer. Because I live in Canada, the shipping cost for me was $4.50. Not bad. Much better than paying like $30+ somewhere else for a full sized foundation that doesn't even work out well. I ordered that yesterday. Again, before and after pictures to follow. Click on Everyday Minerals in my label cloud and updates will be posted as available. Click here for a direct link to the everyday minerals page where you can order free samples. A small fee for shipping will apply.

Lastly, I found reviews on another make up line called KMS Minerals. I noticed that they carried samples as well. When I went on the page where I could order samples, I noticed that while they had foundations in my skin colour range, they didn't seem to have samples. I emailed the company to ask about samples for dark skin. Much to my surprise and delight, I got a response in about 5 minutes. A wonderful lady named Kristi replied to my email and told me that they did, in fact, have samples in my skintone. The KMS website was recently updated and there must have been an oversight. She asked me for my address, which I did provide to her, so that she could send off some samples. When I inquired about the cost for shipping...she told me not to worry about it! Talk about great customer service! Click here for a direct link to the page where you can order free samples. Remember you'll have to pay a small fee for shipping.

I look forward to trying out all of these new products for my skin and hopefully finding something that will become a part of my regular routine. Again, stay tuned for pictures, reviews, and preferences!

Monday, April 21, 2008

Week 2 Blood Results & Bonnie Gordon's School of Cake Design

Here is my second set of blood results. I think this would be week 3 of home dialysis. Hmm...week 3....I might need to start considering ordering supplies....!

Anyhow, all still looks good, but Rose is still concerned with my pre Calcium. She is going to follow up with my nephrologist and get back to me.





Yesterday was my baking and buttercream class at Bonnie Gordon's School of Cake Design . First let me just say that Bonnie is great. When I looked at the school's website and saw all of the great work she had done, I was a bit intimidated. I would soon be in the presence of a cake decorating master! When I met her prior to class, she was more than delightful. She was very laid back and extremely approachable. Just meeting her completely set my mind at ease, and her friendly demeanor set the tone for the rest of the day.

The class started off with everyone introducing themselves and pretty much explaining why they were taking this course and if they had taken any courses before. After that, we looked at the recipes that we were given. These are the recipes that Sarah would demonstrate. These recipes included vanilla cake, chocolate cake, lemon cake, and almond cake. Our list of recipes also included buttercream. We watched intently as Sarah walked us through the steps of making each of these cakes, and also gave us hints and tips for baking successful cakes and making successful buttercreams. We also had a chance to try putting different flavours into the buttercream, like chocolate, raspberry. etc. All were delicious, especially when we put them on the cake (we actually had little cupcakes, but they were made from the cake recipes).

We also cut out own cakes into a 3 tiered cake so that we could fill it and mask it. Since I'm taking the modelling chocolate course next week, I asked if I could use my now filled and masked cake for the class next week. I received a resounding YES! So I left my cake in the fridge at Bonnie's so that it would be there for next week. I can hardly wait until Sunday so I can go to the modelling chocolate class!

Bonnie's studio was also great. The class space was just perfect and in my opinion very conducive to learning. After the modelling chocolate class will be my wedding cakes class. It'll be fantastic!
That's all for now. I'm gonna relax, watch some TV, then get ready for bed since I have to go to work tomorrow.

Saturday, April 19, 2008

Kidney Envy!

Last night, I met up with one of my best friends. We met at a bar and had some usual bar fare (i.e. chicken wings, calamari, etc).

After she dropped me off at home, I logged onto my facebook. When I got there, I noticed pictures of another girl that I had met online who has Lupus. I was pleased and delighted to see the new album she had posted. She had just returned home from the hospital....after having received a brand new kidney!

The pictures show the numerous battle scars she had endured during her hospital stay. These battle scars included bruised wrists from IVs, bandages on her neck from where another tube had been inserted, and staples in her stomach - one set of staples from where the kidney was placed, and another set of staples from where her dialysis line had been removed.

Samanta, the lucky kidney recipient, had told me earlier in the year that the day for her to receive her kidney was drawing near. I kept her in my thoughts and prayers, as I know that something as simple as a cold or a cough or whatever can definitely throw a wrench in any kidney transplant plans.

Don't get me wrong, I was and am one thousand percent happy for Samanta, but when I saw her pictures, it also got me thinking about myself. How nice would it be for me to (finally) receive a kidney to call my very own? My father did all of the necessary tests and he was a match for me. We went through all the tests, and were even told that we were cleared and ready for surgery. Then, at the last minute, we were told "Um, your dad's blood pressure is too high so we can't do the surgery. He has to bring his blood pressure down." I totally understand, as I know that him having high blood pressure can be hazardous to both of us. But geez, I wish they hadn't gotten all of our hopes up by telling us that we were cleared and ready for surgery, and that we were on the "cancellation list", in case any transplant surgery had to be cancelled for whatever reason, they'd call us and we'd have to rush over to the hospital to fill the spot. Sometimes when it comes to these hospitals, as my dad would say, "the left hand doesn't know what the right hand is doing"!

Anyhow, it was only Thursday when I spoke to Julie about putting me on the deceased donor list. Julie is the living donor transplant co-ordinator at the hospital. I think that it's best. If, in fact, my dad's blood pressure does end up going down (without the use of medication) and he's able to donate a kidney to me, that's great. But at the same time, I also feel that me going on the deceased donor list might even decrease the pressure he feels to bring his blood pressure down, subsequently causing his pressure TO go down, therefore making him a suitable donor again. (and yes, I say 'again', because he was cleared and ready to go about 3 years ago...but before surgery, I got sick. Then 2 years ago, we were ready to go...then I got a perforated bowel! Now, his blood pressure is too high! Talk about bad luck! Hehehe).

On the other end of the spectrum, I've spoken to at least 3 different people who are home hemo patients, and they've said that they've taken themselves OFF the deceased donor list and plan to dialyze at home for the rest of their days. They appreciate the predictability of home hemo, as well as the idea of not having to take as many pills. It totally makes sense. I've even spoken to 1 lady who is a conventional dialysis patient. She's seen both sides: the transplant side and the dialysis side. She has also taken herself off of the transplant list. She said that she also enjoys the predictability of dialysis and didn't do well with all of the transplant medication. Also, with all the the hardships she had to go through after receving her kidney where medication and such was concerned, her kidney didn't last very long...maybe 2 years or so. (But, between me and you, I suspect that she had these problems because she wasn't being compliant. I'm sure she didn't take her medication when she was supposed to and wasn't taking it consistently. As it stands now, when I was still an in-centre patient, she wasn't very compliant with her dialysis. She'd skip days - sometimes to the point where she got so ill that she'd have to go to emergency to get urgent dialysis, and she'd also shorten her in-centre dialysis runs - sometimes to 2 hours only! So her opinion is pretty iffy).

I'm glad that Ms. Samanta got her kidney. She's young - 24 years old, 2 years younger than me. She deserves to experience life the way she wants to experience it and be dialysis-free. I hope the kidney works well for her.

Since I'm on the deceased donor list now, my name will be placed on the list as of the date that I began dialysis, which would be in November of 2004. I hope that my time will come soon; I hope to hear my telephone ring soon and be told to hi-tail it to the hospital because there is a kidney waiting for me.

....but then again, who knows? If that doesn't happen for a while, I might just feel like some of the other home hemo patients. Perhaps I'll prefer the predictability of continuting to do home dialysis too....?

Short Post- Pics of My Creation

The below pictured cake is the finished product from my Intermediate Cake Decor class @ McCalls. I'm pretty proud of it. This is officially my 2nd cake.



This is my finished cake! Pretty kewl, huh?







Another View






Close up on my beautiful bouquet of Royal icing flowers


LOL!


Friday, April 18, 2008

Codeine takes the edge off!

I know how terrible that sounds, but it's true. As I mentioned, I've been experiencing some pain in my right ankle. I asked Rose to check the computer yesterday to see if any results had surfaced where my ankle x-rays are concerned. When she checked, the computer said that the results were only partial, and therefore they weren't visible. Shucks. I'd be really interested to know what the problem is and if there is a better treatment/solution for it other than this band-aid codeine solution. In the meantime, however, using the codeine whenever I plan on going out or walking around definitely helps. I've been particularly careful about how I use the codeine, especially since codeine is known for causing...*gulp*...constipation! The last thing someone such as myself (someone who already has stomach issues) is to be constipated.

I'm looking forward to my first cake decorating class at Bonnie Gordon's School of Cake Decorating and Design . The first class that I'll be taking isn't actually a cake decorating class. The name of the class is Baking and Buttercream. People often concern themselves with how pretty/beautiful a cake is...but what's a beautiful cake that doesn't taste good? This course focuses on tips and secrets for creating delicious cakes and buttercreams. There will be recipes provided for us to keep as well. After reading the reviews for the course on Bonnie Gordon's website, I'm really excited to take it. Some very seasoned cake pros took the course and have subsequently changed the way they bake cakes and make buttercream because of it! I think it's a good idea to take it right off the bat...so as not to develop and bad habits.

Yesterday was my 2nd of 4 Australian Method cake decorating class. This Saturday will be my last Intermediate Cake Decorating class. For this Saturday's class, I'm supposed to come prepared with needle-nosed pliers. Mom and I went to home depot this morning after dropping off my bloodwork at the lab so I could buy a pair.

As for my Australian Method cake decorating class, below are some pics of my cake so far, as well as half of a royal icing piped butterfly. I piped the butterfly on a stencil as you can see by the stencil beside it.

Well, that's all for now!

This is my cake so far. This cake has royal icing stringwork
around it, as well as ribbon insertion at the top.
The icing stringwork took me over 2 hours!! :-O





Close up of the cake





This is my half-piped Butterfly on a stencil

Monday, April 14, 2008

Some Blood Results, First Week of Dialysis

(Note that the highlighted numbers represent my blood work, the the numbers to the right indicate the acceptable range for a dialysis patient:




LoL...I haven't seen creatinine that low in 12 years! But my nurse told me to add 60ml of fleet enema to my acid concentrate every dialysis. I think it's to raise my phosphorus. I also have to decrease my dialsate bicarb from 3.5 to 3.1.
There is also some modification to my blood pressure meds. When I was going to begin dialysis last night, my blood pressure was 94/54. I took it again and it was 97/64. I gave myself a 200cc bolus before going to sleep and it went up to 106/67. So that being said, I've stopped taking diltiazem (360mg) for my blood pressure, and I'll keep an eye on it. If it's still low, then my ramipril will have to be modified at all. As soon as I started home hemo, I d/c Lasix/furosemide and calcium.


I also saw my rheumatologist today. I told him about my ankle pain. He checked out my ankle and thought that it might be tendonitis and doesn't think it's Lupus related, but he ordered x-rays. I did them, and he'll check them out. He also ordered blood tests to confirm that it is or isn't Lupus related. I brought him up to speed in regards to all of my dialysis stuff. Oh, and he gave me a prescription for Codeine because of the pain I have walking.
So I suppose Dr. Fortin will call me later in the week in case there is any other stuff he needs to follow up on. My next appt with him is June 30th :)

Friday, April 11, 2008

How Did I Sleep Last Night?

Perfectly well. Not an alarm in sight, not a concentrate error to be heard! I couldn't be more pleased. What's funny is that my machine began alarming at one point. I started cursing in my head, thinking it was time to yet again silence another concentrate error. Much to my shock (and delight), it was an "End UF" alarm. I looked over at my VCR on my TV and noticed it was 8:59am. Oh....it's time to come off! :) I smiled to myself as I sat up and swung my legs over the edge of my bed closest to my machine. No alarms....ahhh..... :)

I started dialysis the night before at around 12:15am, so I thought it was odd that I didn't finish until 8:59am on an 8 hour dialysis run. Then I had to take into account the "self tests" that the machine runs...I believe it's every hour. Dialysis time stops when those tests are happening, so I suppose it makes sense.

I got up and took myself off quickly. The night before I did my first bloodwork at home. After taking the 1 tube, I placed it in my blood spinner. I already have a tube full of water in the other side of the spinner, as there is some sort of message on the spinner that says something about making sure the weight is even on both ends of the spinner. I turned the spinner on for about 20-25 minutes, finished taking my blood pressure, then cocooned myself in my blankets like I like to do.

I began to doze off a bit when the loud *BING* of my spinner let me know that 25 minutes had passed. I nearly had a heart attack! But I got over that quickly. It was probably a good idea that my spinner binged, as I hadn't set my TV to turn off. I like the sound of a TV in the background when I'm trying to sleep, so I always set my TV to turn off in 70 minutes. That's so if I just begin watching a show that'll last an hour, I can watch the whole show (or listen to the whole show as I begin to fall asleep). Then there's a 10 minute buffer...which I've yet to be awake for.

Anyhow, back to taking myself off in a hurry. I didn't know that I'd be finished at 9am, as I had somewhere that I was supposed to be at 10am, and that doesn't include going to the blood lab for the first time to drop off my bloods. I took my post dialysis blood, transfused, then put my machine in disinfect. I took my needles out one at a time. Before taking out my second needle, I used my cell phone to call the house so I could speak to my mother. I asked her if she could drive me to the blood lab and also to my next meeting. I didn't know what to expect at the blood lab. I wasn't sure if I'd have problems because Rose told me that sometimes the lab will give newbies a hard time.

I managed to brush my teeth, wash my face, change, etc while my machine was disinfecting. At around 9:40am, my machine shut itself off. Right on time. I turned my water and my RO off, and out the door I went.

The lab is only about 5-7 minutes away. When I got there, there was one lady standing there and another at the computer. The lady that was standing asked if she could help me. I produced my two blood tubes that were in separate plastic zippys. I told her that I was a home dialysis patient and I had some blood work to drop off. She looked at me like I was nuts!

"What? Who drew this blood??" she asked. I calmly told her that I drew it myself because I'm a home hemodialysis patient. The lady at the computer piped in and said "Yes, that's ok!" as she took the blood. I also had a letter from my home dialysis unit explaining who I am and why I was there. The standing lady read the letter carefully. She seemed to understand a bit more, but still seemed confused. The lady that was sitting down instructed the standing lady to photocopy the letter, give me back the original, and to give me blood tubes to replace the ones I brought in. "Ok, you're all set!" said the lady that was sitting down.

THANK GOODNESS. That whole thing took less than 2 minutes, which was great, because the next place I had to be was a good 20 minutes away.

I'm glad that the blood lab thing went well and I hope it's always that smooth. I think Rose kinda psyched me up for a battle or something! But luckily, as Rose told me, I'm not the first/only home hemo patient that goes there, so I suppose the first patient fought the battle for me and anyone else.

That's all for now. Cake decor class tomorrow, off to the movies with my friend Mark on Sunday, and off to see Dr. Fortin on Monday!

Wednesday, April 9, 2008

Still a few Concentrate Errors!

I wish I could say that I didn't have any concentrate errors last night...but I did. I woke up at around 4:30am-ish to the sound of my machine beeping. The message? Concentrate error. Of course. I looked at my bicart and there was still quite a bit in there, so I hit the side of the bicart with my palm to loosen up the powder. The machine stopped beeping and back off to sleep I went.

With 30 minutes left, it beeped again. Concentrate error. I did the same thing I did before, and it stopped beeping again. All in all, it happened about 4 times. The only think I can think of is to try and put even a slight bit more bicart powder in the cartridge, but at this point it's already pretty full. I don't think it's a good idea to overfill it either as the water has to get in there too. Meh, I dunno.

Today was another tired day. Luckily my dad went to the dialysis unit in the hospital to pick up all of the stuff I needed. That stuff includes my doctor's note for my math class, some signed medical forms that need to be included with my tax return, my handicapped parking pass renewal form, and also some medical scissors. LoL...I think I'm most happy with the scissors. The scissors I've been using are so NOT sharp and it's a problem. When I try to cut the sticky IV3000 tape off of my arm when I'm done dialysis and I'm trying to take my needles out, it simply takes forever due to my dull scissors. But Rose packed like 5 pairs of scissors in there, so I'm quite pleased with that.

Tomorrow I start my Australian method cake decorating class. I'm looking forward to that. I'm also looking forward to seeing my rhuematologist this Monday. I can discuss the pain I've been feeling in my ankles. Well, now its just my right ankle that's giving me intermittent pain. After I raised my prednisone by 10mg to 20mg for about a week and a half or so, the pain in my left ankle pretty much went away. Since the lupus blood tests that I did didn't appear to show any sign of a flare, I'd be interested to see what he has to say about the whole situation.

On Friday I have to go back to the lady that did my hair. At first I was quite happy with it, but after a few days I realized that she didn't put my braids in very tight and they were just falling out all over. It's been about 2 weeks since I did my hair and it looks like I had it done like a month and a half ago. On Saturday, I was at my desk at work and one of my coworkers who starts after me came to my desk to say hello. She looked/bent down and I heard her say "what's this?" When I looked at her, she was holding one of my braids that had fallen out! Can you imagine? That could have potentially been an embarassing situation had it not been one of my good girlfriends at work! I hope that when I go back on Friday she does a better job than she did before!

Tuesday, April 8, 2008

Today Was a Productive Day

I went to work today. I usually work from 9am to 2pm, but I stayed until 3pm because we had a meeting at work. I thought it was important for me to attend the meeting as many important things were discussed. We discussed things related to what the company's expectations would be for us in terms of performance. I was happy to finally be at work on the day of a meeting so that I could get that feedback and information.

Before the meeting I also had a one on one meeting with my manager. She gave me some feedback on my performance so far and I'm pretty happy with it. I'm happy with my progress so far and I think that things can only get better from here on end. Due to the fact that I'm still on LTD (long term disability), my work stats don't currently count towards the team or even to my own personal development. My manager is going to work on getting the stats that I do generate while working to count. I hope they do as it all goes into your personal file. I've been with the company since 2003 and I have limited information in my file stats wise as none of my stats have counted for a long while. By default, if you're working but are still on LTD, none of your stuff counts. While some people might consider that positive because you can make all the mistakes you want and it won't count against you (well, that's not true...making mistakes in the financial sector isn't the best thing!), it's important to have things on your file, especially positive things, when it comes time to apply for another job. Based on your performance, you're given a rating. The higher your rating, the better your performance is. For someone like myself, for the past few years I've been given a default rating of 99. It means nothing. It doesn't mean anything good or bad...just nothing. So I hope to start generate ratings so that in the future when I wish to move on, I'll have some positive stats for the company to look at.

I spoke to Rose yesterday re: the concentrate errors I've been getting. She informed the techs and they called me back a few hours later. I spoke to a tech named Ceasar. He told me that I should try filling up my bicart cartridges a little more, as sometimes when the bicart is getting low, the machine may get confused and give concentrate errors. I hope that this works. I'm goint to proceed to fill up my bicart cartridges a little more right now! I'm going to dialyze tonight so I'm going to see if filling these bicarts a little more will aleviate these crazy concentrate errors.

Sunday, April 6, 2008

Silly Concentrate Errors!

First of all, I'd like to thank Mr. Peckham for posting updates/summaries of my posts on his page. His page has also connected me with many other blogs/sites that I like reading. Thank you!

http://www.billpeckham.com/from_the_sharp_end_of_the/

Dialysis at night has been going pretty well. But I must admit that I was quite exhausted today. After I woke up, I took myself off and lied down as my machine disinfected. When it was over, I turned the water off and made breakfast. After breakfast, I fell asleep again. I'm guessing it's just going to take my body some time to get used to this frequent dialysis thing.

Last night I had some issues cannulating one of my button holes. For now, I've only been using one buttonhole in terms of my arterial line, but rotating buttonholes where the venous line is concerned. This particular arterial buttonhole always cooperates with me, which is great. The venous is a different story. I was poking and poking, but I just couldn't get it in the right place. Eventually I gave up and just went with the other buttonhole which was developed first. Since tomorrow is my dialysis day off, I think I'll take that oppourtunity to cannulate the two buttonhole spots that have been giving me a problem with sharp needles and not blunt needles. Maybe the buttonholes need to be re-worked or something. If I continue to have problems I'll probably go visit Rose in the hospital so we can possibly work on getting those buttonholes working or perhaps creating a new set.


This is a pick of the offending buttonhole. Don't mind my filthy arm...I just took my bandages/gauze off so I could take the picture.


I also seem to be getting the error message "concentrate error". It only happens towards the last hour of dialysis.


When I open my trusty dialysis manual.....

This is what I see:



I know I'm using the right concentrate, I know that the connectors aren't reversed, I'm assuming the water inlet flow is correct as it was correct for the previous 7 hours...so all I can assume is that it's a machine malfunction. Today I'm going to set my machine for 7 hours only, then I'm going to call the techs in the morning. I'm gonna see if setting the machine for 7 hours works, or if it's going to give me the same alarms 1 hour prior to dialysis being done.

Well, that's all for now. It's time to set up my machine, then take a shower, then connect!

Friday, April 4, 2008

Home Hemo Day 2 - Hemoglobin

Today was my second night doing dialysis at home. Everything went pretty smoothly...no unsightly alarms today. I made sure I was well prepared with my prefilled saline syringes and my recirculator and such. I guess the only hiccup in treatment was when I forgot to draw up more than one bottle of heparin. I need at least 1 and 1/4 bottles but I only drew up 1. It didn't matter though, because when the no heparin alarm woke me up I only had about an hour and 15 minutes left of treatment, and the heparin shuts itself off when there is an hour left anyways. I turned the heparin off completely and went back to sleep. When I had about 30 minutes left, I kept getting these silly "concentrate error" errors. What the heck? My acid jug was 1/4 full, and there was still bicart too...so what's the deal? No sooner did I ask myself that question did I realize that I really needed to go to the washroom. I decided to just retransfuse, cap my needles, and hi-tail it to the bathroom.

I think I kind of lied above. Dialysis itself went well, but I didn't sleep very well. I'm not sure why. I slept ok the night before, but not as well this time. After taking myself off, stripping my machine, cleaning up and preparing for my next dialysis, I went back to bed and just stayed there for about an hour and a half. I closed my eyes...but I didn't sleep. Again, to be expected I guess.

I remembered to give myself my aranesp today to. 160 micrograms. Yes, a huge dose I know. Speaking of which, I got a bit of disappointing news on Monday. Remember operation hemofilter management, where I lost some of my blood because my circuit clotted? Well that happened on a Friday. On the following Monday, both Rose and myself thought it would be a good idea to check my hemoglobin. My hemoglobin dropped from like 103 to 90. It was pretty upsetting, especially considering the fact that previously, my hemoglobin was holding strong in the low 100s after my blood transfusion (I think that was in January). I guess we'll just have to keep an eye on it.

Tonight is my dialysis day off. My dialysis days off are Monday nights and Friday Nights. I chose those 2 days because I work on Tuesday morning and also on Saturday mornings. I figure that since those are the two days where I have to get up and leave the house at a decent hour, perhaps I should take those two days off until I get into a steady and organized routine.

I emailed my online school and asked them about extending my course, which is what I'm going to do. I need a "medical note", which shouldn't be a problem. But I had to email them back to ask about a "medical note". What is a medical note? Is that the same as a "doctor's note", or can my nurse Rose write it? Who knows.

Oh, I also finally got an appointment to see a plastic surgeon. I had mentioned this previously, but I want to get the scar on my stomach fixed. I have a huge scar from when I had to have colostomy surgery. If you haven't read the post in question, it's here: http://flowonlupus.blogspot.com/search/label/colostomy%20surgery%20part%202
In the last paragraph I talk about wanting to see a plastic surgeon to fix my scar. When I had staples in my stomach, they were removed too early, considering the fact that I'm on prednisone and don't heal as quickly as others. When the staples were removed, the wound opened up almost immediately, and had to be packed with gauze every day in order for it to heal. The reult? A big ugly scar. I hope to get that fixed. My appointment is on May 8th. They said that it might not be covered, but I'm guessing/hoping that's just a formality and they have to say that. I can't imagine why it wouldn't be covered by OHIP....it's not like I'm asking for a boob job or something. I have a huge scar due to an error that was made through no fault of my own. I think it should be covered. I'll discuss more when I speak to the surgeon. If and when the surgery is scheduled, I'll post before pictures, then obviously after the surgery is done, after pictures.

Thursday, April 3, 2008

First REAL 8 hours home dialysis run

Actually, it was more like 7 hours and 20 minutes. I had about 35 minutes left or so and I really had to go to the washroom so I just decided to retransfuse. I had already used the recirculator that I had out earlier in the night.

Last night, I was all set up and ready for dialysis. I had been on for about 20 minutes when I kept getting arterial pressure alarms. Great...JUST GREAT. This was the same needle/buttonhole that was giving me problems a few days ago. I knew I couldn't be lucky enough to have a hitch-free first dialysis...

Luckily, as instructed by Rose, I had my recirculator and my saline syringes set and ready for action!


Tada! My Recirculator!





I recirculated my lines and removed the offending needle. It was so close to the tape of the venous needle that I couldn't hold my gauze against it properly at first so I had some dripping.

After that, I recannulated. I reattached my lines and away I went. Much to my surprise, the rest of the night was pretty uneventful. No alarms, no beeping, no changing of any bicart or acid....nadda.

Below are some of the pictures from my first day. I was happy to receive a phone call froo Rose this morning. She called me (on her day off, might I add) to check up on me. How lovely! :)

My bloodlines. My hand.



These are the needles in my arm. This pic was taken moments before my arterial decided to be a lamewad


Dang you, arterial! (arterial - the needle on the right)


My Arm again



This is my machine


My Screen. It's "self testing" right now :P

My Table, and my mug full of ginger ale.
You can see my TV in the background. I was watching CSI Miami
:-)


Hopefully tonight goes even smoother...and hopefully I remember to give myself my aranesp! I forgot yesterday. And friday night is my day off! :)

When I woke up, as I mentioned, I had to go to the washroom so I came off early. I wasn't feeling great. My stomach hurt a little bit, but not nearly the same as during conventional in-centre dialysis, so I'm happy about that. I'll remain confident that it'll slowly go away as my body gets used to regular dialysis!

Stay tuned

Wednesday, April 2, 2008

First Home Dialysis Run...well, Not Really.

Today was my first home dialysis run. I did it at around 9am this morning when my nurse Rose got to my house. It was a short run: 2 hours. The point was mostly to make sure that the machine was working properly and that I had everything set up correctly.

Last night was a night of frantic organization. I've had these boxes of supplies sitting in my living room for almost a week if not more...and I hadn't opened any of them. Since I was expecting Rose in the morning, I had to make sure that I had everything that I needed to dialyze ready at the very least.

My morning run went well and there weren't any hitches. I had the oppourtunity to just sit and speak to Rose and that was great. I think back to a few years ago when I'd hide my face when Rose would walk by because I just knew she was going to ask me about home dialysis...and at the time I had absolutely no interest in it. I was so focused on getting my transplant. When I found out that the transplant would have to be on hold, I knew that the only option at this point would be home hemo because I certainly couldn't even fathom doing in-centre dialysis any longer. Who knew that a few short years later Rose would be in my bedroom, sitting on the edge of my bed, chatting to me about a variety of things?

I wouldn't have it any other way. I'm glad that I got Rose. Don't get me wrong, the other nurses are great too....it's just that I can't imagine how different things would have been without her. At times I got mopey (is that how you'd spell it? Mopey?), frustrated, etc. I hated messing up/making mistakes. There were times when I thought "what am I doing here?" to myself. The funny thing is that these thoughts didn't really cross my mind when I was learning how to use the dialysis machine itself. I had already psyched myself up when it came to the dialysis machine. I told myself that i'd be difficult and I wouldn't get it right away...and I more or less accepted that in my own head. It wasn't until I learned all of the other stuff that would go with it. By other stuff, I mean learning how to take care of my RO, doing all of these tests for the RO all the time, changing it's filter, testing it for bacteria, counting colonies, etc. That was a whole new thing that I had no idea about. I'm glad that I didn't know about it beforehand. I'm not quite sure/ confident that I would have made the same decision to do home hemo had I knew all of that extra stuff before.

After Rose left, I made myself some soup. I got ill in the middle of the night and I threw up. I was pretty hungry. After that, I fell asleep.

I was woken up by the sound of my doorbell. Who could that be? Perhaps a delivery of a package? When I got to the door, I remembered that I was expecting a visitor. It was Tosin. I met Tosin at the hospital. He's one of the hemo assistants. We became friends when we met, especially due to the fact that we're both Nigerian and we both speak Yoruba. Well...he speaks it. I speak just enought to get by :) We had a chat for about an hour and then he was off to school.

So I've snapped a couple of pictures of my machine and my supplies in their storage containers. I'm hoping to take some more detailed pics and post them tomorrow.

Some of my Supplies!


My Bleach! :)


This is my machine. It's a bellco

Wish me luck tonight....it'll be my first real home 8 hour dialysis run...!

ahhhh!
 
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