Let's all give a cheer for my poor little arms. They held out and I was able to get what will hopefully be my last plasma-exchange yesterday. For this round anyway.
The Real Deal...
It has been a very long few weeks, and we are all pretty worn down. So many people have written and called to tell me that they are thinking of me, and many of you have called me an inspiration. These are wonderful, flattering words, and I truly appreciate them. It isn't that I am always smiling and thinking that things are just fine. I am certainly a very positive person, but there are times when even I get down. I suppose I wouldn't be human if I didn't feel some anger towards this disease and what it has done to me and to my family. There is huge guilt that comes along with accepting help- but I don't have a choice.
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When it comes down to it, I hate the disease, but I know how to live with it. More than anything HATE the drugs that come along with the disease. I hate the way they make me feel and look. But I know they are a temporary, necessary evil, so I stick with them. This most recent exacerbation has been so hard because we tried using the prednisone and then the IVIg (five times) and none of that worked. So since February I have been taking drugs that I hate that haven't done what they needed to do. And then I had to truck down to Boston every other day for 2 more weeks for 5 more treatments. It is just a lot to handle. That includes involving all the fantastic people who rally when I get into trouble- and not being able to be the full time mom and wife that I love being. Plus, this exacerbation is following the last one in November when I ended up in ICU, which also took several months to get out of. Basically, the past 3 years have been a series of one crisis after another.
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I hope that I don't sound like I am whining here- it is what it is. I am just saying, people see me and so many say, "wow, you LOOK great" and I know they are surprised. That is one of the things about this disease that is hard to live with. People can't see what is going on inside of me, and how much of a struggle some of the things that everyone takes for granted are for me. Like using a hairdryer, or writing a letter, or chewing a bagel. And I know that the steroids have made me gain weight like they do to lots of people- lets face it I was way to thin to begin with, but hey, 30lbs is 30lbs even if you started out being too thin. It is still a shock to your system, and it is hard to look in the mirror at a face you don't recognize as your own.
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My Mom gave me such a boost last week. She kept telling me how proud she was of me and how I handle all this (and she gave me lots of hugs- which was just what I needed last week). After leaving my primary care appointment when I found out about the high blood pressure, I had gotten a lot of information to process, not all of it good- and I just asked my folks to hang in there with me. Mommy commented after I had moved through my thoughts and made sense of it all that she thinks it is great that I am able to take whatever they throw at me and deal with it. It is true- I deal with one thing at a time and make it work for me. I keep getting thrown these curve balls, and I have to keep making it work. There is no alternative, and I will not be walking around complaining all the time. I do want to say thank you to those of you who listen when I do need to complain, or cry or just yell. You all know who you are- and I cherish each and every one of you!
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Enough of that....Now for some explanations and good news. I am feeling much stronger after the last treatment, and if this cold doesn't throw a wrench in it (once the body starts producing antibodies to fight infection, it usually produces MG antibodies too), I think this series of pheresis is going to hold me for a while. I had a tough night last night- these darn steroids keep you from sleeping, and the cold didn't help- and I still feel stronger today than I did yesterday. In the past, a series of 5 would keep me strong for about 3-4 weeks, and then I would have to start the process all over again. The big difference this time is that I am taking the cyclosporin, and the goal is to get me off the steroids and on the cyclosporin, hopefully not needing to go in for pheresis at all, or very rarely. I am down to 25 mg of prednisone, and tapering as planned. I wish we could go faster, but I am going to listen to the Guru- who is a huge fan of what is in my mind a ridiculously slow taper. (I am pretty sure he has never taken prednisone lol).
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The best news of all is that my last cyclosporin level showed that I have gone from a 55 to a 301!!!! The optimal dose is between 100-400. That means once I am off the steroids and the pheresis has worn off, we will know FOR SURE if the drug is going to work or not. I actually cried when Janice, my nurse, told me. And the most excellent thing is, if this doesn't work, which IT WILL, we have a plan. We will be using the pheresis if I get into any trouble- and I am to call the minute I start to feel it, not wait until I am sounding like I have had a case of wine at 10am. Hopefully that will keep the pheresis down to a minimum- like maybe one or two treatments rather than 5. If I continue to need the pheresis on a regular basis, then we can assume with conviction that the cyclosporin is not doing what it needs to do, and then we move on to the cytoxan. I am not going to get into details about that, since I am certain that I am not going to need it.
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Photo explanation... For those of you who are interested in what is going on in the photo above, in everyday non medical speak, the tubes in my arms are attached to dialysis needles going into the crook of my arms. The hardest thing about that is the needles are made of steel, so you absolutely can't move a muscle during the treatments. Very hard when you are taking diuretics, by the way! I am an old pro at it, though. I am usually floating by the end of the 2 hours (depending on how much time it takes to hook me up, I can be sitting like that for 3 hours or so). Jan and Danata keep telling me we can use a bedpan- but I am not willing to go there yet. I digress.
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Usually, the right arm is the arm that they draw the blood from. I think they do that because it is my stronger arm, and I have to use a little ball to pump the veins every once and a while. The left arm gets really tired when they draw from there. The blood is then moved through all the tubing to a centrifuge where the plasma is separated from the red and white blood cells. That big yucky looking bag hanging on the machine (right side) is the old plasma- filled with those nasty antibodies that are causing these symptoms. The problem is that the plasma also has all kinds of good stuff in it- proteins, etc. That is one of the reasons that we do the exchanges every other day- to let my body play a little catch up.
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After the plasma has been removed, albumin (and some saline) is then added to the red and white blood cells and the new "clean" blood is then pumped back into my left arm. The albumin is hanging in those bottles. The white thing that looks like it has lines on it is the heater. We spend a lot of time turning that thing on and off during my treatments, because I tend to get very warm- then cold. The treatment leaves me feeling puffy and tired, but otherwise I generally don't have much in the way of side effects. It is kind of like the feeling you get right before you get the flu. Wipes you out, but it passes, usually within a few hours. It is worth it- especially compared to the IVIg, which gave me migraines and terrible flu-like symptoms. For now, it is the ideal treatment, because IT WORKS!!!!
Thank you all again for all your love and support. I always say this, because I really feel your positive thoughts and prayers. It is helping, so keep it coming!
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