Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts
5.12.13
Heart Transplants and Heart Tattoos
So I've probably never told you, or more like, I know I've never told you, that I'm a transplant patient.
When I was 11 years old I was diagnosed with severe dialated cardiomyopathy which basically meant that my heart had grown to almost the size of my ribcage and didn't pump blood very well anymore.
I didn't have any pains, just a lot of arhythmia and I felt sick all the time (wanted to throw up constantly).
For the first few months I was in the children's hospital in Helsinki in the ICU (Intensive Care Unit) and then the heart ward and got heart medication from the start. I was put on the transplant list, but I was taken off of it, when I started to show signs of recovery. I was sent home with a large amount of medicine to take and I felt slowly better again. I wasn't allowed to participate in gym or anything of the sort, I wasn't even allowed to go to school with the bus, I had to take a taxi so I wouldn't strain myself and my heart.
However, in March 2002 my condition crashed. I got such a huge amount of arhythmia that day (maybe the 22nd, can't remember) that I mentioned it to my dad and off we went to the hospital. There they told me that my condition had gone down to where we started at 9 months earlier. So I was put on the transplant list again, as an urgent case. I dont' remember how long I waited, but it wasn't days or months, it was only a few hours and off I went into surgery. My parents were sent home and there they said they just walked around the dining room table waiting for the phone call to tell them I'm alright and have a new working heart now.
Of course, it's never quite that simple. They did get that phone call, I was alright, I was happy, in terrible pains and in a huge opiate cloud, but happy to be alive and happy to know that from now on I can live a normal life again.
Again, not quite that simple. Every day I have to take a large amount of medication to keep me alive. Some of them, only a small portion, is for antirejection (rejection is when my white blood cells attack my heart because it's not a perfect cellular match to my own cells and see it as a foreign object). The rest are for a number of other things: blood thinners so I don't get blood clots, blood pressure medicine, because the antirejection meds cause high blood pressure, and colesterol meds because again, the rejection meds can cause high colesterol levels.
Actually, I've been quite fine using these meds for the past 11½ years now, but hospitals and me don't get along anymore. Now I have anti-depressants for both depression and anxiety problems, anti-anxiety meds and as a backup, sedatives, because I've had such awful experiences in hospitals, and after so long of taking blood samples, my veins are non existent. I have had some wonderful times in hospitals as well - kind people treating me and giving me the feeling that they know what they're doing and really want to help me, so as a rule, I'm not complaining, but even the idea of having to go some strange ward in a strange hospital makes me cry. I am crying as I'm writing this.
I have had a small small tiny little rejection twice. Once right after the operation, which was ordinary, since they had to see what doses of meds to give me, and then after six years from the operation, and then they switched Sandimmun to Prograf. That made me very happy, because I hated Sandimmun with all my heart. It smelled dreadful and tasted even worse, and it caused both hair growth (everywhere) and enlarged gums. So I basically had no visible teeth and a nice big moustache. Never had a unibrow, but my eyebrows still go all the way to my hairline on the sides! Also I still do have a moustache. Jees I'm more hairy than most Finnish men! Thank goodness for razors.
Another medicine that gave me a lot of issues and a lot of self-confidence problems was cortison. I was a real example case of the worst possible visible side effects - I grew to a balloon in about a month without eating almost anything because I still felt sick after the operation. It was all water that was being stored in my body. That's the reason I have so many stretch marks all over my body. I was a huge hairy balloon from sixth grade all through to ninth grade when I sort of levelled to normal and then got a short lasting eating disorder. I was never skinny, I never lasted that long, but I did go from L to S in a short time period.
My transplant has given me a lot to think about over the years, and though I am and will always be so grateful that I am alive today, and that someone out there was kind enough to be donour before they died, and saved my life, I have gotten a lot of trouble from this as well. When I caught mono in winter 2009, I never would have thought that that virus (EBV: Epstein Barr Virus) would cause me a cancer. Last spring, in March actually, I was diagnosed with PTLD - post transplatic lymphoproliferative disease - which meant that I had B-cell lymphoma. Cancer in my lymph nodes.
Thankfully, the treatment I got was less harmfull for me than what chemo would've been, so I was lucky in that sense, but it's not yet sure if the cancer is all gone. Right now I am plagued with pain in my jawline which is caused by an enlarged lymph node (over a centimetre large!) and the results from my previous enteroscopy still showed signs of possible lymphoma so now I got a new enteroscopy and will hear about the results hopefully next week.
Maybe now it is sort of clear what has happened in my life and why I am on anti-depressants, which I should have been on for years already. I just refused to believe I was depressed, though I thought about suicide more than once. More than a hundred times I suppose. I knew I could never do it, because of my dad, I couldn't leave him lonely, with a dead wife and a dead daughter, and two very difficult dogs.
I am a survivor. So is my dad. So was my mother as well after her first cancer. We're all survivors and I will do whatever it takes to stay on this planet. In this world. But it's not always easy, it's not always simple, and most of the time, it's really painful.
Hopefully this clears up somethings that I'm sure some of you at least have wondered about if you have read my introduction, or know me in real life.
When I was 11 years old I was diagnosed with severe dialated cardiomyopathy which basically meant that my heart had grown to almost the size of my ribcage and didn't pump blood very well anymore.
I didn't have any pains, just a lot of arhythmia and I felt sick all the time (wanted to throw up constantly).
For the first few months I was in the children's hospital in Helsinki in the ICU (Intensive Care Unit) and then the heart ward and got heart medication from the start. I was put on the transplant list, but I was taken off of it, when I started to show signs of recovery. I was sent home with a large amount of medicine to take and I felt slowly better again. I wasn't allowed to participate in gym or anything of the sort, I wasn't even allowed to go to school with the bus, I had to take a taxi so I wouldn't strain myself and my heart.
However, in March 2002 my condition crashed. I got such a huge amount of arhythmia that day (maybe the 22nd, can't remember) that I mentioned it to my dad and off we went to the hospital. There they told me that my condition had gone down to where we started at 9 months earlier. So I was put on the transplant list again, as an urgent case. I dont' remember how long I waited, but it wasn't days or months, it was only a few hours and off I went into surgery. My parents were sent home and there they said they just walked around the dining room table waiting for the phone call to tell them I'm alright and have a new working heart now.
Of course, it's never quite that simple. They did get that phone call, I was alright, I was happy, in terrible pains and in a huge opiate cloud, but happy to be alive and happy to know that from now on I can live a normal life again.
Again, not quite that simple. Every day I have to take a large amount of medication to keep me alive. Some of them, only a small portion, is for antirejection (rejection is when my white blood cells attack my heart because it's not a perfect cellular match to my own cells and see it as a foreign object). The rest are for a number of other things: blood thinners so I don't get blood clots, blood pressure medicine, because the antirejection meds cause high blood pressure, and colesterol meds because again, the rejection meds can cause high colesterol levels.
Actually, I've been quite fine using these meds for the past 11½ years now, but hospitals and me don't get along anymore. Now I have anti-depressants for both depression and anxiety problems, anti-anxiety meds and as a backup, sedatives, because I've had such awful experiences in hospitals, and after so long of taking blood samples, my veins are non existent. I have had some wonderful times in hospitals as well - kind people treating me and giving me the feeling that they know what they're doing and really want to help me, so as a rule, I'm not complaining, but even the idea of having to go some strange ward in a strange hospital makes me cry. I am crying as I'm writing this.
I have had a small small tiny little rejection twice. Once right after the operation, which was ordinary, since they had to see what doses of meds to give me, and then after six years from the operation, and then they switched Sandimmun to Prograf. That made me very happy, because I hated Sandimmun with all my heart. It smelled dreadful and tasted even worse, and it caused both hair growth (everywhere) and enlarged gums. So I basically had no visible teeth and a nice big moustache. Never had a unibrow, but my eyebrows still go all the way to my hairline on the sides! Also I still do have a moustache. Jees I'm more hairy than most Finnish men! Thank goodness for razors.
Another medicine that gave me a lot of issues and a lot of self-confidence problems was cortison. I was a real example case of the worst possible visible side effects - I grew to a balloon in about a month without eating almost anything because I still felt sick after the operation. It was all water that was being stored in my body. That's the reason I have so many stretch marks all over my body. I was a huge hairy balloon from sixth grade all through to ninth grade when I sort of levelled to normal and then got a short lasting eating disorder. I was never skinny, I never lasted that long, but I did go from L to S in a short time period.
My transplant has given me a lot to think about over the years, and though I am and will always be so grateful that I am alive today, and that someone out there was kind enough to be donour before they died, and saved my life, I have gotten a lot of trouble from this as well. When I caught mono in winter 2009, I never would have thought that that virus (EBV: Epstein Barr Virus) would cause me a cancer. Last spring, in March actually, I was diagnosed with PTLD - post transplatic lymphoproliferative disease - which meant that I had B-cell lymphoma. Cancer in my lymph nodes.
Thankfully, the treatment I got was less harmfull for me than what chemo would've been, so I was lucky in that sense, but it's not yet sure if the cancer is all gone. Right now I am plagued with pain in my jawline which is caused by an enlarged lymph node (over a centimetre large!) and the results from my previous enteroscopy still showed signs of possible lymphoma so now I got a new enteroscopy and will hear about the results hopefully next week.
Maybe now it is sort of clear what has happened in my life and why I am on anti-depressants, which I should have been on for years already. I just refused to believe I was depressed, though I thought about suicide more than once. More than a hundred times I suppose. I knew I could never do it, because of my dad, I couldn't leave him lonely, with a dead wife and a dead daughter, and two very difficult dogs.
I am a survivor. So is my dad. So was my mother as well after her first cancer. We're all survivors and I will do whatever it takes to stay on this planet. In this world. But it's not always easy, it's not always simple, and most of the time, it's really painful.
Hopefully this clears up somethings that I'm sure some of you at least have wondered about if you have read my introduction, or know me in real life.
28.11.13
Day XV: Getting out of hospital
Well, not quite yet, I still have to wait till Saturday, but still. I'm really looking forward to it. I'm nervous about it too, because of the random pain spikes I get every now and again, and the fact that I tend to get a panic attack because of them, but all that might change once I'm home - safe. I feel so safe at home that it's the only place where I usually feel completely relaxed.
I'm not really an anxious person, or well, in certain cases yes, but usually I'm really laidback and all this hospital business has removed all that from me.
I'm really really happy to get home again.
But first I have a day of only eating clear liquids and tomorrow and enteroscopy. They look through my intire intestinal tract. All of my bowls. Yay, sounds like fun doesn't it? Nah, I'm not too concerned, it's under anesthesia so I don't feel a thing, but do need to be slightly sedated beforehand, because I might just get a panic attack when they try to find a vein for the IV...
Oh, and the mouse on my laptop broke, and I turned off the touch pad ages ago, cause I hated it, and I find it way too arduous to try and get it on without a mouse so now my dad is going to bring me a mouse to hospital in the evening, so I can continue writing my essays. I still haven't finished the second one... And I need five essays now. Jeez Louise.
Today I'll get guests again, more than my dad that is, he is here every evening if he just can - we're really close. I've always been a daddy's girl, and I'm really lucky to have a dad that really cares about me and supports me in my decisions through my life, even though I'm already technically an adult. Plus I think he'd be really bored if he didn't have a chatterbox like me around!
I'm not really an anxious person, or well, in certain cases yes, but usually I'm really laidback and all this hospital business has removed all that from me.
I'm really really happy to get home again.
But first I have a day of only eating clear liquids and tomorrow and enteroscopy. They look through my intire intestinal tract. All of my bowls. Yay, sounds like fun doesn't it? Nah, I'm not too concerned, it's under anesthesia so I don't feel a thing, but do need to be slightly sedated beforehand, because I might just get a panic attack when they try to find a vein for the IV...
Oh, and the mouse on my laptop broke, and I turned off the touch pad ages ago, cause I hated it, and I find it way too arduous to try and get it on without a mouse so now my dad is going to bring me a mouse to hospital in the evening, so I can continue writing my essays. I still haven't finished the second one... And I need five essays now. Jeez Louise.
Today I'll get guests again, more than my dad that is, he is here every evening if he just can - we're really close. I've always been a daddy's girl, and I'm really lucky to have a dad that really cares about me and supports me in my decisions through my life, even though I'm already technically an adult. Plus I think he'd be really bored if he didn't have a chatterbox like me around!
27.11.13
Day XIV: Depression can really hit you
I never thought I'd be on anti-depressants. I never even thought I was ever depressed, although to be honest, even now I'm not getting anti-depressants because of depression. I'm getting them for anxiety. I have anxiety issues, getting the panic attacks and not being able to end them. The anti-depressants are there to help me not to get that many panic attacks and keep them lighter, so I'd be able to maybe stop them. I'm also getting sedatives in the evening, so I won't wake up in the middle of the night knowing I'm in hospital and getting an immediate panic attack.
Which is what has happened a few times, I can tell you, my goodness. It's quite clear that my issue is nowhere near as bad as some people's, I'm not that depressed, not that anxious, but it's all subjective. For me, this is really difficult, because I'm used to just going through my life, which hasn't been an easy one, and just letting it flow. I've gone with the flow, if I can use a cliche here. But it's clearly taken it's toll, now I want to have these meds. Now I want to see a shrink. Yes, still going to call them shrinks.
I'm sort of afraid that when I get home now, that all this will continue. That I'll still get panic attacks, like I did in the summer. I don't want to, they're horrible and they make me really afraid of what will happen if I just keep having them. Because I've been in a panic attack for almost eight hours at the worst, and it's really really horrible hyperventilating for eight straight hours. Those were in hospitals though, thankfully, at home they never lasted that long, I got to take enough meds to keep me calm enough, but not anymore.
I don't really know what medication and in what doses I'm going to get home. I know I'm getting Cipralex, the anti-depressant, and Zyprexa, the sedative, but in what doses and what times and whatwhowherewhathow? Also I'm getting Neurontin in some doses to take at home, but I don't know yet about that either. It's too early to tell. I also don't know what kind of a shrink I'll see after this and that scares the living shit out of me, because I hate shrinks. I hate the look I usually get, that really condescending look, that makes you want to just yell you're better than they are and storm out. I've been lucky here in hospital, the shrink and the nurse are both lovely, just wonderful people, and I feel comfortable talking to them. I hope I'll get someone like that afterwards too. Someone I can talk to. Otherwise I'll have to ask for another, and there may be no other and what will I do then?
Scared I am, as Yoda might put it. Anxious. I'll get on Saturday if all goes well. Completely discharged. It's a fantastic thing, I've been in hospitals for three weeks now, it's getting really tiresome. I miss home. I really relaly want to go home. But at the same time - scared. Because of what if I get pains, what if I get panics, I don't know what to do.
I hope I will find out. And I will have my dad there all the time, so that will help me a lot. It will really keep me going more than this sitting around alone for most of the day in a room trying to write essays for teachers.
Which is what has happened a few times, I can tell you, my goodness. It's quite clear that my issue is nowhere near as bad as some people's, I'm not that depressed, not that anxious, but it's all subjective. For me, this is really difficult, because I'm used to just going through my life, which hasn't been an easy one, and just letting it flow. I've gone with the flow, if I can use a cliche here. But it's clearly taken it's toll, now I want to have these meds. Now I want to see a shrink. Yes, still going to call them shrinks.
I'm sort of afraid that when I get home now, that all this will continue. That I'll still get panic attacks, like I did in the summer. I don't want to, they're horrible and they make me really afraid of what will happen if I just keep having them. Because I've been in a panic attack for almost eight hours at the worst, and it's really really horrible hyperventilating for eight straight hours. Those were in hospitals though, thankfully, at home they never lasted that long, I got to take enough meds to keep me calm enough, but not anymore.
I don't really know what medication and in what doses I'm going to get home. I know I'm getting Cipralex, the anti-depressant, and Zyprexa, the sedative, but in what doses and what times and whatwhowherewhathow? Also I'm getting Neurontin in some doses to take at home, but I don't know yet about that either. It's too early to tell. I also don't know what kind of a shrink I'll see after this and that scares the living shit out of me, because I hate shrinks. I hate the look I usually get, that really condescending look, that makes you want to just yell you're better than they are and storm out. I've been lucky here in hospital, the shrink and the nurse are both lovely, just wonderful people, and I feel comfortable talking to them. I hope I'll get someone like that afterwards too. Someone I can talk to. Otherwise I'll have to ask for another, and there may be no other and what will I do then?
Scared I am, as Yoda might put it. Anxious. I'll get on Saturday if all goes well. Completely discharged. It's a fantastic thing, I've been in hospitals for three weeks now, it's getting really tiresome. I miss home. I really relaly want to go home. But at the same time - scared. Because of what if I get pains, what if I get panics, I don't know what to do.
I hope I will find out. And I will have my dad there all the time, so that will help me a lot. It will really keep me going more than this sitting around alone for most of the day in a room trying to write essays for teachers.
22.11.13
Day IX: Sleepiness, essays and friends
I had a lovely day today. Though I had that terrible panic attack last night after my tomography, I slept like a baby throughout the entire night (no wonder, I was so drugged). My nurse told me I babbled something about only seeing blue things and that she asked me if I was okay, and my answer was a very happy "Ohhh yeess".
So yeah.
Painkillers are starting to work, I got some new ones above all the rest, and I don't get injections anymore, only Oxynorm as liquid, which is sort of awesome and sort of horrid since it tastes dreadful. I also felt like eating today, which is why I ate a lot of sweets. Shouldn't really, but hey, it's almost weekend.
I woke up at six am, which is when I also started writing my ten page essay on why christianity became the dominant religion in ancient Rome. It's not that easy writing an essay when you're so drugged that you can barely even read your source texts. But I don't mind, I've written seven pages thus far, so I'm doing quite well. I think I'll write one page more today and then the rest tomorrow. Or just all the rest tomorrow. Then it's off to other essays!
I probably mentioned this earlier, but I'm probably going to start studying something else next Autumn and now in Spring I'm just going to have a nice long holiday.
Got some visitors as well, other than my dad. Actually my dad didn't come at all today, because I had so many other visitors. Three of my friends from Tampere came to visit me, one tutorcolleague, her friend and one of my freshers. I love them, they're such lovely people! It was wonderful seeing them after such a long time.
Also, all these painkillers are making me really really drowsy so all the time I feel like sleeping. Which is why I'm going to say goodnight to you now and have some really nice dreams!
Here's a few pictures of sleepy corgies and a picture of me from this morning, after I just woke up:
So yeah.
Painkillers are starting to work, I got some new ones above all the rest, and I don't get injections anymore, only Oxynorm as liquid, which is sort of awesome and sort of horrid since it tastes dreadful. I also felt like eating today, which is why I ate a lot of sweets. Shouldn't really, but hey, it's almost weekend.
I woke up at six am, which is when I also started writing my ten page essay on why christianity became the dominant religion in ancient Rome. It's not that easy writing an essay when you're so drugged that you can barely even read your source texts. But I don't mind, I've written seven pages thus far, so I'm doing quite well. I think I'll write one page more today and then the rest tomorrow. Or just all the rest tomorrow. Then it's off to other essays!
I probably mentioned this earlier, but I'm probably going to start studying something else next Autumn and now in Spring I'm just going to have a nice long holiday.
Got some visitors as well, other than my dad. Actually my dad didn't come at all today, because I had so many other visitors. Three of my friends from Tampere came to visit me, one tutorcolleague, her friend and one of my freshers. I love them, they're such lovely people! It was wonderful seeing them after such a long time.
Also, all these painkillers are making me really really drowsy so all the time I feel like sleeping. Which is why I'm going to say goodnight to you now and have some really nice dreams!
Here's a few pictures of sleepy corgies and a picture of me from this morning, after I just woke up:
Subscribe to:
Posts (Atom)