Friday, February 28, 2014

Operation: Prednisone Taper

When I saw my transplant nephrologist on Monday, he agreed that now was the right time to begin operation prednisone taper (and ultimately discontinue).

I've been on prednisone in varying amounts since I was first diagnosed in '96. I have prednisone to thank for many of my health issues past and present, including cataracts, stretch marks, moon face, and, of course, the avascular necrosis which resulted in the need to have both my hip and my knee replaced.

In the past, doctors have tried to taper me off of prednisone. The problem is the fact that my lupus would flare something terrible whenever I got any lower than the 7.5 mg daily dose. I've been on 5 mg for several years, with the exception of a temporary increase in the dose shortly after my transplant. The other problem is that my doctors were just trying to taper the drug off completely and not replace it with something that perhaps wasn't chock full of horrid side effects.

In comes Imuran
This is what I will be taking in order to replace prednisone. But in the meantime, we are still erring on the side of caution and tapering my prednisone dose slowly while including frequent blood work.

I'll essentially be taking half of an imuran pill everyday.

Half of an imuran pill = 25mg

Easily broken in half 
I will be pairing my imuran with half of a prednisone pill. (2.5mg) I'll be doing this on Tuesdays, Thursdays, Saturdays and Sundays.
25 mg of imuran and 2.5 mg of prednisone

On Mondays, Wednesdays, and Fridays, I will take my usual 5mg of prednisone coupled with the 25mg of imuran. This will go on for one month.  After one month, what I'll be doing is eliminating the prednisone altogether and bumping the imuran up to an entire pill every day. My doc will be keeping a very close eye on my bloodwork to ensure there isn't anything funny happening.

So for now, this is what my morning medications look like:
On Mon, Wed and Fri, it is a full (5mg) prednisone pill

  1. Advagraf- immunosuppressant 
  2. Imuran - immunosuppressant
  3. Pantoloc- helps with my reflux
  4. Prednisone- the drug I love to hate
  5. Palafer- Operation: wake up, hemoglobin
  6. Vitamin D- well..I have low vitamin D.
It's nice to finally be taking steps in the right direction to rid me of this prednisone. I just sincerely hope that my body responds well and doesn't go crazy after the prednisone is gone, especially since I've been taking it for so long. I'll update as usual, including any changes to my bloodwork. Hopefully there won't be anything negative to report.

Wish me luck..!

Thursday, February 27, 2014

Looking forward to

Looking forward to the day when I can look back on all of this and laugh; the day that all of this is but a distant memory. 

But for now, while it all seems "fresh"...

This sucks. 
This sucks, bro. 

Thursday, February 20, 2014

It's my healing & I'll nap if I want to!-PART 2!

Ok, I stand by my statement. Healing after surgery like knee replacement can certainly cause extreme fatigue. However, based on my history and for "just in case" purposes, I got blood work done a few days ago.

Lo and behold-my hemoglobin was 86 (8.6 for my American friends). Looks like my body didn't quite bounce back after the blood loss suffered during my knee replacement. So what's next? Well my transplant coordinator wants to  know if my iron stores are high or low, and that will dictate the course of action. It's either gonna be IV iron, or aranesp (EPO).

I'll keep you posted.  *sigh*...I'm soooo full of fun/surprises.  Never a dull moment..

Monday, February 17, 2014

It's my healing & I'll nap if I want to!

In the days following my knee replacement, I've had trouble sleeping. This was mostly due to pain as well as simply being unable to get comfortable. I'm a side sleeper or a stomach sleeper. After surgery, my available sleeping positions were, of course, pretty limited.

Now that almost a month has passed since surgery as well as some intense Physio, I'm more flexible and able to move around in bed a bit more. Also, the sheer amount of pain that I've been in has subsided a bit and is responding better to my pain medication. 

So? What does this mean? It means the the amount of sleep I've been getting as well as the quality of sleep I've been getting has increased exponentionally. I still wake up in the middle of the night a few times. Maybe 2 or 3 times. But still, even with that being the case, I'm sleeping much better. And, if undisturbed, I'll probably sleep comfortably until 9:30am. 

What has changed is my energy level by midday. I am doneeee.  Exhausted. Finished. Finito. 

This worried me a bit. I have an appointment with my Nephro next Monday, so I've scheduled some bloodwork for myself tomorrow so that the results are in by the time I go to that appointment. After my surgery, my hemoglobin dropped from its usual range of about 120 down to 79 (for my American friends, that's 12.0 to 7.9). This was to be expected. After all, I just had major surgery and some blood loss is inevidible. My hemoglobin began to creep back up as the days passed while I was in the hospital so obviously that is a good thing. 

So? Why am I so tired a few weeks after my knee replacement? Assuming my bloodwork tomorrow is all normal, I can only attribute this to one thing: HEALING! For crying out loud, major surgery means major healing. Our amazing bodies put so much energy and effort into healing out bodies when it senses trauma or illness. Perhaps the side effect for this natural process of healing I'm experiencing is fatigue. 

 Now, I won't lie. I jumped onto google yesterday to look up "tired after knee replacement surgery" and the above answer popped up. I don't know why I didn't think of that on my own, but it makes total and complete sense. 

So, if you too jumped on google and searched for what I searched for, or something fancier like "fatigue after total knee arthroplasty", and you've been checked out and are fine from a medical standpoint- here's my advice to you. SLEEP. NAP. REST. And, lastly- DON'T WORRY-this is NORMAL! 


Disclaimer: while I wish it was, this gorgeous baby is not me-I found her on google LOL. 

Saturday, February 15, 2014

Progress Progress Progress

It has been 24 days since my knee replacement surgery and I must admit-things aren't looking quite as dire as I thought they did this time a week or a week and a half ago.

While I do still have pain, I don't feel it necessary to heavily medicate myself and maintain a medication/pain killer schedule any more like I did previously. I very rarely use the oxycodone any  more (I haven't used it for about 3-4 days) and I only need the morphine 3 times a day, especially when I'm doing my exercises.

I previously dreaded going to physio, as I knew I was in for some major pain and tears. Now, I do still expect pain, but I'm actually beginning to see major progress. When I went to my first physio session, the physiotherapist told me that generally, 3 months after knee replacement, the surgeon wants the patient to be able to achieve a range of motion of at least 90 degrees. I cannot recall the exact number on that first day, but I'm sure it was less than 80. Man, I definitely have some work to do.

In continuing with my one on one therapist, Alma, plenty of progress has been made. During my next physio session, I'm going to try and get Alma to take pictures of me doing my different exercises so I can post them up. After a few sessions with Alma, I had already met the 90 degree angle requirement only within a couple of weeks. After each physio session, Alma would re-measure my range of motion. Most recently, I went from (I think) 112 degrees to 126 degrees. Amazing. I simply cannot wait to be able to get back into the gym and do things I wasn't able to do before due to discomfort.

Here is what my knee is looking like nowadays. I think I need to wear mittens while I sleep like babies do, because apparently I scratch my knee like crazy while I'm asleep/half asleep.  Well, I'm actually scratching quite a bit, likely due to the morphine. But yeah, I trimmed my nails all the way down to help minimize "damage" to my scabs and scar. It's minimally effective ha.

The little "dots" on the sides of the long scar are the insertion points of the staples. Freaky lookin'!

Sunday, February 9, 2014

Stand up for yourself! Dell Debacle!

Seems like I'm always finding myself in some sort of debacle! Well, here's the recent one: my online purchase of a dell laptop.

I bought my laptop online on boxing day. My good ol' HP has seen better days. The keys are popping out, the screen flickers in black and white when I go to a website that is mostly black, and the sound doesn't work. Not fun if you're trying to watch something on youtube, netflix, etc.

Luckily, I get a discount from a few different computer companies through work-Dell, HP, Lenovo, Apple, etc. It was essentially a toss up between Dell and HP. The first laptop I ever bought for myself was a Dell, and the second was an HP. I don't recall having any major problems with my Dell, but the second time around, at the advice of a computer tech, I went with an HP. My HP was a beautiful, albeit heavy, 17.3 inch screen laptop. It was a beauty! Loved her. Had her for about 4 years and would have happily let technology pass me by and keep her for another 2-3 years if not for the problems that began to surface. At that point, it was more economical to just buy a new computer.

When I spoke to co-workers and such and told them that my ultimate purchase was going to be between Dell and HP, everyone seemed to sing Dell's praises. Having no recollection of any major problems with Dell in the past, I decided to go with them again.

With boxing day around the corner, I didn't really have enough time to gather up all of the money I wanted to gather in order to buy my computer at a discount on top of the discount I already get through work. I went online and looked at various computers before deciding on the computer that I'm currently typing on-a 15 inch touch screen inspiron.

I liked the online purchasing process. There is someone on the other end in a "chat" typed capacity that walks you through your purchase and assists you. Before I began the purchase, I asked the person helping me if I could buy the warranty later, since, again, I was short on funds, but the computer I was purchasing was at quite a good discount. The Dell rep said I had up to one year to make the purchase. This worked perfectly for me, since I planned to make a purchase in about a month or so. What I wanted was the warranty in case my computer stops working for whatever reason, as well as the warranty that covers accidental damage. An additional 2 or 3 years should do.

So I made the purchase on December 26 and received the computer about 2 weeks later. I transferred most of my files from my HP to the Dell and worked on getting acquainted with this crazy operating system called Windows 8.

As you know, shortly afterwards, I had my knee replaced and the last few weeks have been a bit rough for me. First I attempted to do it through Dell's chat mechanism. I was told I needed to call and was given a phone number. I called-I was transferred to someone else...who told me I had to do it through chat. In all, I spoke to 3 different chat agents and called 3 different numbers.

I finally got someone through chat who did say that I had to speak to someone directly, but offered to call me, then connect me to the person I had to speak to. She was very passionate about having me fill out the chat survey that pops up at the end of every chat where I discuss how helpful the chat rep was. She told me that she was going to put me on hold and it might  take a while, so perhaps I could use that time to fill out the survey. I told her I would do it AFTER I was satisfactorily transferred over to the appropriate person.

Eventually I was connected to someone in technical support. After chatting for a while, he specified to me that I could extend my warranty, but I could not get the accidental damage coverage. Why? I asked. I was told that THAT particular coverage needed to be purchased within 30 days of purchase of the computer. What? That's not what I was told. How many days has it been since I bought the computer?

33 days.


I of course protested, but to no avail. I would have spoken to a manager . then and there, but I had company coming to visit me and my knee (haha) so I opted to call back after my wonderful cousins left.

I called back (and again, got the run around for about 20 minutes) before I got another manager. Out of respect, I'll refer to him at "C". After discussing with him, he essentially told me that the rep that assisted me in buying the computer told me the right thing, and I didn't ask the right questions. The warranty is one thing-the accidental damage is different-it's considered a coverage, not a warranty. I expressed to him that me not being a Dell employee, I wasn't aware that different warranties (he corrected me-it's not a WARRANTY, it's a COVERAGE) have different names and different time frames in terms of when they should be purchased. On top of that, it's 33 days later for a purchase that should, as per Dell's apparent policies, should have been purchased within 30 days. It's not like I called 3-4 months later. C wouldn't budge. When he seemed to be dismissing me, like "well, is there any thing ELSE I could help you with" typed verbiage, I told him yes-I would like to escalate this further.

In asking to have it escalated further, he reiterated to me that he would be happy to do that, but the person I spoke to would simply tell me the exact same thing that he has already told me, and if  I wanted to hear the exact same thing, he would be happy to arrange it. Well arrange it then-you're not going to deter me from speaking to someone else. He was also sure to let me know that he would fully note/document my account with the conversation we had and all that he had told me-again, trying to deter me, or perhaps thinking I would escalate it and change my story. Listen-just escalate it. He told me that someone would contact me the following business day.

The following business day, an escalations rep named Deb called me. He reiterated what C told me, but after hearing what I had told him, understood my point. He offered to contact the warranty department and ask them to give me both of the warranties/coverages that I wanted, especially based on the circumstance. Since the system that enters the warranty only allows for this particular warranty to be added to a system up to 30 days after purchase, he could not promise me that system functionality would allow this addition to take place, but he would contact the appropriate department and would try.

The next day, he contacted me again and said he was going to forward the information. In the meantime, he requested various pictures of my laptop just to ensure that it was still in good condition. I don't put it past people to try and purchase this warranty after the computer has already been damaged. I took the appropriate photos and sent them off. He said someone from the warranty department would call me the following day.

The following day, the warranty department contacted me and I was able to successfully add both warranty/coverages to my computer. The process was seamless, though it did appear that some things needed to be done manually, perhaps because it was past the 30 days. Other than that, everything went through just fine.

The day after that, Deb called me back again as he wanted to ensure everything went smoothly, and if it was ok for him to close the case. I thanked him for his diligence, and that it was in fact ok to close my case.

So in the end, I stood my ground and was able to get was I was entitled to. I wasn't given total and complete information and should not have been penalized for that. C didn't see that, but Deb did, and I'm happy about how everything worked out, even though I had to call/chat with over 20 people before getting what I needed.  In the end, it all worked out.

And that is my Dell Debacle.

Friday, February 7, 2014

Knee Replacement Surgery-The continuation

Let's be clear-I may have mentioned this in my previous post, but I'll mention it again. I've been through MANY a-surgery. I've experienced various amounts of pain, and have concluded that I am pretty good at handling it. That said-this knee replacement IS the most PAINFUL thing I've ever experienced. When the nerve blocks wore off (one in my back and one in my thigh), no amount of pain medication absolutely resolved my pain like it has in the past for other types of pain. My hope would have been that these pain meds would have completely resolved the pain I was in, but perhaps that is an unrealistic expectation. That being the case, I can honestly say that most time, my pain meds didn't even manage to take the edge off, let alone completely resolve my pain 100%.

When I began physiotherapy after my knee replacement, I learned that I was in store for a whole new level of pain. I took my pain medication a decent amount of time before therapy: 45 minutes to an hour. But this meant very little, especially since the simple walk from the house to the car, then from the car to the actual physiotherapy area of the clinic was already a battle in my eyes.

The things that we (and I) consider so...simple, were such big battles for me. I  began my physio at the end of January, and I am only now just beginning to be able to lie down on my back and straighten my leg all the way so that it's flat on the bed with my toes pointing up. My knee wants to remain a little bit bent-that's how it's more comfortable. One exercise we did was put a roll (the clinic uses a large coffee can covered with a soft cloth) under my knee while I'm lying down, and me straightening my leg from the knee down. This was one of those weird things where my mind was telling my body to do something...but it wasn't listening. Eyes squeezed shut, teeth clenched, beaded sweat dripping down my temples...but no. It wouldn't move. The next exercise involved removing the coffee can and just trying to lift my straightened leg up in the air, hold, then released. Couldn't do it. At this point, my tears came not strictly from pain, but from frustration. All I could hear were the words of my surgeon echoing through my head, telling me that if I didn't really hit the physio hard, my knee would "freeze", as in, develop scar tissue I suppose, and I wouldn't be able to move my knee properly at all. I definitely don't want that.

This week, what should have happened was that I should have been in the group physiotherapy class. However, based on my level of discomfort and difficulty in doing some of the exercises, we stuck to one on one treatment. I think I have really benefited from this and have seen great improvement as well.

One of the things causing a lot of pain for me was, of course, the staples. Another exercise, which involved lying on my back and bending the operated knee up as much as possible while keeping the sole of my feet on the bed, always seemed even more difficult, as I felt that staples were just ripping at my skin with every bend. I mean, of course- a swollen joint is more difficult to use. But, on top of that, imagine a swollen joint that has like 34-35 staples in it. No bueno.

Look at that. this is right down the centre of my knee! That hurts! Luckily for me, my staples were removed on Wednesday, or two days ago. Yes, that hurt too. The staples were removed by a family member who is an ER nurse, and very capable as well. Of course, being a family member, the extraction of the staples was done in as gentle a manner as possible. But, how gentle can it be to have little pieces of metal ripped from your skin that has now begun to heal around the staples and develop scabs? Well still, it was as gentle as possible.

After the staples were removed, my personal ER nurse applied a plethora of steri-strips to my wound. We certainly don't want or need a re-enactment of "stomachgate", where my stomach popped open like a squeezed bag of potato chips, when a doctor ordered my stomach staples out too early and the nurse obliged.  In this instance, my ER nurse checked my knee thoroughly before removing the staples. No re-enactments today.

Before and After

This is me, shoes on, cane in hand, and ready to face physio yesterday.

Physiotherapy yesterday went really well. My tears were minimal and I was able to do much more than I was in previous days. My physio Alma commended me, and that felt good. This felt good because I was beginning to get scared about my progress, and felt that I was perhaps falling behind. I'm glad that I'm not.

The other day, I got a special delivery from my office-lovely flowers! It's nice when your team thinks of you. This definitely lifted my spirits.

I was nervous about my progress at first, but I feel better about it now. Let's see what the future brings..!
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