Ok, readers! The day has finally arrived! The Sirolimus has begun!
These tiny little pills, to be taken twice a day, are what I've been waiting for, for just over 3 weeks!
These pills, along with the steroids, and the plethora of other tablets that I'm am being made to take, mean I'm taking 17 tablets a day. Fingers crossed everybody. Hopefully this will be the start of my road to recovery! I've posted a photo below to give an idea. These are the pills I take in the morning.
Now, as if my blood content isn't bad enough, with the low immunoglobulins, haemoglobins, WBCs, neutrophils, potassium, and more; there's something "extra special" the lab needs to do to any transfusion I have. I don't quite understand it, but there's an antibody in my blood, which means transfusions need to be cross matched and radiated, whatever that means.
Because of this, any blood requested for me takes hours to get hold of, hours to sort in the lab and then hours to finally get to me. Each bag of blood is kept refrigerated, which means each unit (bag) needs to be ordered up from the lab separately. This means that your nurse that day really needs to be on top of their stuff! If 3 units of blood are requested for me, I just find it easier to get it done one right after another, rather than wait hours and hours. As previously stated, I don't like being attached to Baxter the IV stand all the time, but getting it sorted is just my preferred way. I'm one of the lucky ones, in that I haven't had any bad reactions to blood (touch wood), and so far most of my nurses having been willing to let me transfuse each unit over 2 hours, rather than the usual 3; this makes all the difference when you're having 3 units of blood, because it cuts out 3 hours of IV time. Bonus, huh?
This is a unit of blood. One unit of blood is around 300mls I believe and in the last few weeks I've had more units than I can count... At least a dozen, I reckon. These are the only things that are keeping my haemoglobin levels up. Now, when I say up, I don't mean by a huge amount, (currently in the low 90s) but enough to give me my energy back, or some of it. I don't know how I feel about this, because to me it just seems kind of temporary and a quick fix, but I suppose, if it's helping, I might as well do it. It's not like I've got anything else going on.
As a quick note, thank you to everyone who donates blood. If you are eligible to donate I urge you to do it. Hundreds of people out there need blood, platelets (chicken stock), immunoglobulins, bone marrow, you name it. If you're healthy, and you have some to spare, please give!
Now, onto my various injections! As you all know, I am no stranger to a needle in my stomach, but these babies are the worst. This image above, if you can't tell, is the left side of my tummy/ hip. When you're in hospital, and if you have cannulas or pick lines, you are given daily anti-blood clot injections, into the thigh or stomach. This is especially true of immobile people.
Five years ago, the first time I'd ever had a needle pushed into my stomach, I must have been much more sensitive, because I remember it feeling like a bee sting. I had one of these awful injections and then refused the rest. Hey, the nurses can't physically force you to do something. Small victories and all.
Well, now, I've just decided to go with the flow. What can I say? I've matured.
A nurse told me that if you press on the needle site after the injection then you will get a bruise. I didn't touch any of them! I still got a bruise. Many bruises, as you can see; there are a few in my right thigh too. Since being admitted to Hammersmith I haven't been asked to have one of these injections, and I haven't mentioned them. The longer I can get away without having them, the better.
The only other injection I have is called Filgrastim. This is designed to boost neutrophil levels, and I've been having it every day for the last three weeks. So far, there have been no significant jumps in my neutrophil levels, but they've recently upped the dose, so maybe something will happen! Doubt it though.
Also, if you want to become a nurse, please don't be afraid of injecting someone. I've lost count of how many nurses have delivered me this injection and asked if I wanted to do it. Each time I say yes. That's right folks, when you're in hospital sometimes you have to give yourself injections...
Hospital, like life, is full of firsts. I know that's obvious.
Five years ago, for me, was one big first. It wasn't my first time in hospital, or even my first trip to A&E, (I've broken my wrists a couple times), but it was my first lengthy stay away from home. It was the first time I'd been away from my parents for any extended amount of time, other than maybe two weeks when I went on holiday.
For some people, that might be quite a daunting process, and I certainly got a little weepy at times, but I've always had this kind of "get on with it" attitude. As far as I can tell, this is something I get from my father.
Everything that happened to me while I was in Maidstone in 2012 was a first, pretty much, apart from the blood tests.
First bone marrow biopsy, first time a needle was put in my wrist, first time I slept on a plastic mattress, first time taking a certain pill, first this and that, etc.
Because of this, my dad and I started a little unofficial competition.
The Medical Firsts.
He's had quite a lot of the same, or similar, medical things done to him, as I have to me. Five years ago, I'd phone him and say, "I've just had a CT scan", and he'd respond with something along the lines of, "I've had that, and an MRI", like it was old news, and then we'd laugh. We are quite a light-hearted family.
For whatever reason, weirdly enough, this definitely helped. It shed a little light on the situation, and also meant that I wasn't the only person who had ever had to go through something like this. A blasé attitude, for something that isn't particularly blasé.
Not that the attitude was always blasé; we were definitely a concerned family, worried, but a laid back attitude toward it, however forced it might be, meant that we were all more relaxed than some other families could have been.
Our competition is one that I'm sure I am winning, but we would have to write a tally to see. Dad's had some victories here and there, and so have I.
The firsts I had five years ago, are seconds now. This ain't my first rodeo. But, there are definitely a few things that have happened to me this time around that have never happened before.
For example, I've now had blood taken from the artery and veins in the underside of my wrists, which wasn't as painful as I thought it would be. Sure, I've had blood taken from my hands and the side of my wrists before, but no one has ever attempted those spots on me before.
The only thing of significance that I haven't undergone, is a proper surgery. Dad wins this round.
And soon! I'm about to have another first, and I'm kind of looking forward to it. Weird, right? That I'd look forward to medical treatment, but what else is there to do in here?
Last night, a doctor informed me that because I'm on steroids, and my immune system is suppressed, I'm prone to catching something called PCP, and they want to give me preventative treatment for that. This treatment comes in the form of pills, or a nebuliser. Well, the pills can cause low WBC, so that's out.
Nebuliser it is!
As far as I know, it's just something they want me to do while I'm on the steroids, once a month, for 30 minutes. Which, once I'm released, means I'll have to come up here several times. Let's hope I can combine trips.
Well, what did I do last night?! I phoned Dad, told him the information, adding to the stats, and he said he'd used a nebuliser at the GP.
Dad - 1. Rachel - 0.
Well, I guess we'll be even again soon, Pops!
And the cherry on top? They're letting me go home today! I'm certainly one happy bunny!
This definitely won't be the end of my writings; In fact, it's just the beginning!
Thank you for reading,
Rachel.
These tiny little pills, to be taken twice a day, are what I've been waiting for, for just over 3 weeks!
These pills (pictured above) are designed to suppress your immune system, similar to that of steroids, but in a less aggressive way. I think they are also used with organ transplant patients, though I don't know what exactly they would do in that situation.
Maidstone couldn't get hold of and dispense these pills, which is why I had to come up to Hammersmith Hospital to be given them. Ridiculous, right, that only certain hospitals can get certain drugs?
So, the aim is, as far as I know (because I'm not even sure the consultants are really aware) for these to become my main treatment. Over the coming weeks, or months, I should be weaned off the steroids, and the hope is that the Sirolimus will then take the lead in treating me. I think. But plans change.
I've been reading through the little leaflet you get with any box of pills, especially focused on the side effects and I can't help but laugh. There are a lot of possible side effects involved in consuming these tiny little tablets, some worse than others. Amongst those on the list are tuberculosis and shingles, but also more mild effects like headaches, stomach pain and fevers.
The ones that get me though, are as follows; low red blood cells, low platelets, a reduced number of infection fighting type cells and low levels of neutrophils. Isn't this exactly what we are trying to counteract?! I mean, I know they have to list each and every possible reaction that anyone could possibly get, but let's hope these ones don't effect me!
Now, as if my blood content isn't bad enough, with the low immunoglobulins, haemoglobins, WBCs, neutrophils, potassium, and more; there's something "extra special" the lab needs to do to any transfusion I have. I don't quite understand it, but there's an antibody in my blood, which means transfusions need to be cross matched and radiated, whatever that means.
As a quick note, thank you to everyone who donates blood. If you are eligible to donate I urge you to do it. Hundreds of people out there need blood, platelets (chicken stock), immunoglobulins, bone marrow, you name it. If you're healthy, and you have some to spare, please give!
Now, onto my various injections! As you all know, I am no stranger to a needle in my stomach, but these babies are the worst. This image above, if you can't tell, is the left side of my tummy/ hip. When you're in hospital, and if you have cannulas or pick lines, you are given daily anti-blood clot injections, into the thigh or stomach. This is especially true of immobile people.
Five years ago, the first time I'd ever had a needle pushed into my stomach, I must have been much more sensitive, because I remember it feeling like a bee sting. I had one of these awful injections and then refused the rest. Hey, the nurses can't physically force you to do something. Small victories and all.
Well, now, I've just decided to go with the flow. What can I say? I've matured.
A nurse told me that if you press on the needle site after the injection then you will get a bruise. I didn't touch any of them! I still got a bruise. Many bruises, as you can see; there are a few in my right thigh too. Since being admitted to Hammersmith I haven't been asked to have one of these injections, and I haven't mentioned them. The longer I can get away without having them, the better.
The only other injection I have is called Filgrastim. This is designed to boost neutrophil levels, and I've been having it every day for the last three weeks. So far, there have been no significant jumps in my neutrophil levels, but they've recently upped the dose, so maybe something will happen! Doubt it though.
Also, if you want to become a nurse, please don't be afraid of injecting someone. I've lost count of how many nurses have delivered me this injection and asked if I wanted to do it. Each time I say yes. That's right folks, when you're in hospital sometimes you have to give yourself injections...
Five years ago, for me, was one big first. It wasn't my first time in hospital, or even my first trip to A&E, (I've broken my wrists a couple times), but it was my first lengthy stay away from home. It was the first time I'd been away from my parents for any extended amount of time, other than maybe two weeks when I went on holiday.
For some people, that might be quite a daunting process, and I certainly got a little weepy at times, but I've always had this kind of "get on with it" attitude. As far as I can tell, this is something I get from my father.
Everything that happened to me while I was in Maidstone in 2012 was a first, pretty much, apart from the blood tests.
First bone marrow biopsy, first time a needle was put in my wrist, first time I slept on a plastic mattress, first time taking a certain pill, first this and that, etc.
Because of this, my dad and I started a little unofficial competition.
The Medical Firsts.
He's had quite a lot of the same, or similar, medical things done to him, as I have to me. Five years ago, I'd phone him and say, "I've just had a CT scan", and he'd respond with something along the lines of, "I've had that, and an MRI", like it was old news, and then we'd laugh. We are quite a light-hearted family.
For whatever reason, weirdly enough, this definitely helped. It shed a little light on the situation, and also meant that I wasn't the only person who had ever had to go through something like this. A blasé attitude, for something that isn't particularly blasé.
Not that the attitude was always blasé; we were definitely a concerned family, worried, but a laid back attitude toward it, however forced it might be, meant that we were all more relaxed than some other families could have been.
Our competition is one that I'm sure I am winning, but we would have to write a tally to see. Dad's had some victories here and there, and so have I.
The firsts I had five years ago, are seconds now. This ain't my first rodeo. But, there are definitely a few things that have happened to me this time around that have never happened before.
For example, I've now had blood taken from the artery and veins in the underside of my wrists, which wasn't as painful as I thought it would be. Sure, I've had blood taken from my hands and the side of my wrists before, but no one has ever attempted those spots on me before.
The only thing of significance that I haven't undergone, is a proper surgery. Dad wins this round.
And soon! I'm about to have another first, and I'm kind of looking forward to it. Weird, right? That I'd look forward to medical treatment, but what else is there to do in here?
Last night, a doctor informed me that because I'm on steroids, and my immune system is suppressed, I'm prone to catching something called PCP, and they want to give me preventative treatment for that. This treatment comes in the form of pills, or a nebuliser. Well, the pills can cause low WBC, so that's out.
Nebuliser it is!
As far as I know, it's just something they want me to do while I'm on the steroids, once a month, for 30 minutes. Which, once I'm released, means I'll have to come up here several times. Let's hope I can combine trips.
Well, what did I do last night?! I phoned Dad, told him the information, adding to the stats, and he said he'd used a nebuliser at the GP.
Dad - 1. Rachel - 0.
Well, I guess we'll be even again soon, Pops!
And the cherry on top? They're letting me go home today! I'm certainly one happy bunny!
This definitely won't be the end of my writings; In fact, it's just the beginning!
Thank you for reading,
Rachel.
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