Let me start by apologizing on this post being one day late. You will just have to enjoy it over a relaxing Saturday morning coffee instead :) Truthfully I had an entirely different post planned for yesterday but as I reflected more on what I wanted to write I felt today's post needed to be said.
I have mentioned a few times over the past couple weeks how much difficulty my body has been having. I lost over 16 pounds over the course of 2 weeks, scary I know. They almost admitted me into the hospital for thanksgiving weekend to fill me up with fluids. Instead we changed up my drug cocktail which seemed to curtail the issue of losing water and now I am up 20 pounds from that point. Yes you heard it right, my weight has fluctuated over 36 pounds in the past 4 weeks. Needless to say I hadn't been feeling much like myself.
Don't worry though, I am been riding this roller coaster now for almost 10 months and I have learned to just go with it.
I often talk about my drug cocktails but never really go into detail, I thought today I could explain the mix and how it affects my BMT recovery rollercoaster.
The "Cocktail" is a mix of three different types of drugs:
1.) Immunosuppressants
2.) Protector Pills (as I like to call them)
3.) Prophalytic Pills
Immonsuppressants
These are the bread and butter pills of my recovery. Their job is to suppress the new immune system that I received from my donor so it doesn't go around destroying every cell in my body. You see not only did I get replacement stem cells to produce my blood for me, I also a whack load of the donors T-Cells. For those that don't know, T cells are the cells in our immune system that go around attacking, eating, and destroying what it thinks are foreign invaders. They do this because they have certain DNA markers that are supposed to make the organs of the body, so if a T cell sees something that doesn't have its DNA marker, it attacks. For the transplant they try their best to get us strong DNA marker matching but there are so many markers it is impossible to attain a perfect match. This is what GVHD is in a nutshell. The donor's T cells see certain parts of my body as foreign and are attempting to destroy them.
This is where the immunosuppressants come in. They reduce the effectiveness of the Tcells ability to attack me. My current cocktail of immunosuppressants is 3 different pills.
1.) Myofortic - this pill some people are only on for 90 days, but in others like me you have much more stubbern Tcells that need to keep that suppressing pressure applied to them. I take 2 of these pills twice a day
2.) Cyclosporine - this is another of the immunosuppresants. This pill is also acts as an anti-rejection drug from the transplant. The dose of this changes on a weekly basis as they have to keep the amount of cyclcosporine in my system at theurapeutic levels. But for the most part I take 2 pills twice a day. If you haven't ever seen this 100mg monsters you truly are missing out. They are some of the biggest, stinkiest pills ever!
3.) Predinose - this is the "miracle" drug that is always getting moved around in doses. It is essentially an extremely strong anti-inflammatory drug so anytime my GVHD gets out of control I have given high doses of this to calm it back down before lasting damage can be done to my body. Right now I am on approximately 2 pills a day of this.
This takes my weekly pill total to 70 pills, it is a lot I know but I still have two more categories to go.
There are some drawbacks to these wonder pills. Although they work magic on the Tcells they can reek havoc on the rest of your body. The cyclosporine burns of magnesium when you take it and the predinsone has a whole slew of negative side effects. This is why the second category exists, what I call the protector pills!
Protector Pills
These pills have one purpose and that is to try and minimize the debilitating side effects the first group can cause. Because the cyclosporine burns off magnesium I have to take magnesium supplements to keep my blood chemistry correct. Low magnesium can cause muscle cramps and arrests which if not monitored properly can cause heart failure. For this I take 2 pills a day.
The predinonse is the real bastard of the group. Sure it is extremely effective in stopping the GVHD but its list of side effects is endless. This is what I call the rollercoaster pill because you are getting moved around on doses so quickly that it it always throwing you through an emotional rollercoaster.
The main side effects it has are:
-affects the heart causing high blood pressure - I used to take two blood pressure meds for this but now only 1 pill once a day
-destroys bones like crazy. being on this pill for extended periods of time will eat away all your bones, and I have been pretty much on it for two years now. To combat this problem I take a whole slew of drugs. I take a bone harderner once a week. Calcium twice a day and Vitamin D twice a day.
-destoys the long muscle groups - This is probably the saddest side effect as the predinsone eats away your large muscle groups. It can get so bad that people can't even walk. Just come to clinic with me one day and you will see a who host of people in really bad shape. There are no drugs to combat this, just easy exercise to try and keep the muscles strong, this is where my photography helps so much.
-can induce diabetes - I had this problem last year where I became extremely diabetic. To the point I was adminstering on myself 6 different insulin doses a day. Thankfully this time around my body hasn't taken up this nasty side effect.
-retains fat and water this is a natural corticosteroid that occurs in the body naturally, just as patients we are given such high doses it shuts our adrenal glands down and our bodies don't need to produce it anymore. The adrenal gland convert chlosterol into this steroid, so when you are on these high doses little fat stores show up all over your body (very common trait is moon face, where the neck is greatly enlarged). of all the side effects, it is this one that I hate the most. It is vain I know but can't help it :)
So as you can see there is a huge range of pills that need to be taken in order to combat these nasty side effects. In all my weekly count of these pills is 50 pills
Prophalytic Pills
These pills help make up my broad range defense against foreign intruders since my immune system is comprised at the moment. My regular cocktail consists of an anti-biotic (Septra), an anti-viral (Acyclovir), and an anti-fungal (fluconzonale). These three drugs pretty much help cover all of my bases for potential infections. What are the quantities you may ask.
-septra 2 pills three times a week
-acyclovir 2 pills daily
-fluconzonale 3 pills weekly
Since my guts have been actuing up though I have had the special priveldge of aquiring two new pills to this group. They are anti-biotics that are specifically for stomach bacteria (sorry the names have slipped me at this moment). For those I take:
Drug one: 1 pill twice a day
Drug 2: 1 pill three times a day.
So if we do the math my prophylatic weekly pill count is normally 23 pills a week but with this new routine it has jumped to 58 pills a week!
So there you have it, in any given week I take injest a cocktail of 143 pills a week!! And how do I handle it all you may ask? Well I have a handy 5 layer pill dosset and a great memory!
I hope this gives you some more insight what I mean when I am talking about the drug cocktails in my posts.....Just remember the next time you are struggling to take that one multivitamin once a day.....it could be worse!
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