I've never felt so drained in all my life. That may sound like hyperbole but I honestly believe it is true. Little under 2 weeks ago I started my course of Prednisolone corticosteroids. They started at 30mg and since then I have slept on average 2 to 3 hours per night. The dosage stepped down to 20mg after a week and will stay there for 2 weeks. For one glorious night after the change I slept for 4 hours and thought for a moment my sleep pattern might actually improve, then the next night I slept for an hour.
Sleep was always the one thing you could count on, that no matter how bad everything else got, at the end of the day you would climb into bed and fall asleep and forget everything, and when you wake up, bed would be so enticing in its embrace you'd easily drift off again and sleep longer if you needed. I miss that. Right now I am awake until I can't move, then I fall asleep, and when I wake up it's like I never slept at all. There is no element of rest anymore. I feel constantly drained.
The sensation of being constantly exhausted whilst simultaneously having insomnia is incredibly alien. I've tried to be more active, what little I can, but that's difficult as my breathing problems still persist and the slightest physical activity leaves me breathless so I've tried to fill my time with mental activity that would hopefully expend some of the "spare?" energy I have built up. I add a question there because I am not entirely sure how I am managing not to collapse.
I am eating though, and my appetite is in overdrive. I haven't gained any weight though which is a relief as many people I have seen talking about Prednisolone online seem to complain of that as their main side affect. I honestly don't know if I would swap. Would I take a few extra stone to be able to have a somewhat normal sleep pattern? I don't know, my sleep pattern wasn't exactly completely normal as it was before this all started, and I know if I gain weight I'll regret that in the long run.
As for the actual food, I haven't had takeout since before the course of steroids began; I wasn't explicitly told I couldn't but I think combining fast food, questionable hygiene ratings of restaurants and a weakened immune system would be asking for trouble.
Getting Somewhere
My treatment began a few days ago. After my Bronchoscopy I was prescribed a course of steroids, accompanied by a stomach tablet to try and mitigate some of the effects. As I had expected, I was prescribed Prednisolone starting at 30mg which is close to the maximum safe dose of 40mg, after which I will be stepping down to 20mg then 15mg over the first 4 weeks, where it will remain until review. The stomach tablet is Lansoprazole at 15mg, which is where it will stay until Prednisolone ends.
I've never taken steroids before, the experience has been unusual to say the least. I don't understand much about the type of medication and what it does, all I know is that it is a corticosteroid and works by weakening the immune system since Sarcoidosis is an autoimmune disease which causes the body to attack itself and the best way to combat that is to weaken the body's response. I have been advised if I were to take the steroids alone I would likely develop a stomach ulcer hence the need for Lansoprazole.
In terms of side affects, I did have quite bad diarrhoea and stomach cramps for the first two days which are side affects of Lansoprazole, this subsided however. As for recovery from the Bronchoscopy, I was coughing up quite a bit of blood on the day of the Bronchoscopy and the day after, that then turned to a yellowish brown mucus on the third day and has now turned to small amounts of clear liquid much like saliva but with the odd trace of mucus.
The most pressing side affect at the moment however is my sleep pattern, which is well and truly fucked. The Prednisolone advice says that it can interfere with sleep and it is best to take it in the morning time with food, which I have been doing. Despite this, in the last 48 hours I have slept about 3 hours - 2 last night and 1 the night before. The tablets themselves are awkward, they come in doses of 1mg and 5mg nothing else, and since I need 30mg a day initially that means taking 6 tablets at once in the morning with food. I don't normally eat breakfast, I have to be awake for a while before I can eat something without feeling sick, I have always been like that, so that puts a spanner in the works for a start, but the fact I have to take those 6 tablets, and the Lansoprazole at the same time, makes the whole thing awkward, and the cherry on top of the cake is that Prednisolone tastes like shit. It's like the taste of ear wax if you've ever had the misfortune of tasting that.
At least I can be sure they are actually doing something if I am having side affects, they're not just passing straight through me. In terms of practicality and day to day life, I have to avoid anyone that is sick, avoid anything that may cause infection, be careful about what I eat, and I have to carry a card in my wallet that says I am currently being treated with steroids in the event of any injury etc that a doctor must know to continue the dosage as stopping abruptly can cause serious health problems apparently.
I've never taken steroids before, the experience has been unusual to say the least. I don't understand much about the type of medication and what it does, all I know is that it is a corticosteroid and works by weakening the immune system since Sarcoidosis is an autoimmune disease which causes the body to attack itself and the best way to combat that is to weaken the body's response. I have been advised if I were to take the steroids alone I would likely develop a stomach ulcer hence the need for Lansoprazole.
In terms of side affects, I did have quite bad diarrhoea and stomach cramps for the first two days which are side affects of Lansoprazole, this subsided however. As for recovery from the Bronchoscopy, I was coughing up quite a bit of blood on the day of the Bronchoscopy and the day after, that then turned to a yellowish brown mucus on the third day and has now turned to small amounts of clear liquid much like saliva but with the odd trace of mucus.
The most pressing side affect at the moment however is my sleep pattern, which is well and truly fucked. The Prednisolone advice says that it can interfere with sleep and it is best to take it in the morning time with food, which I have been doing. Despite this, in the last 48 hours I have slept about 3 hours - 2 last night and 1 the night before. The tablets themselves are awkward, they come in doses of 1mg and 5mg nothing else, and since I need 30mg a day initially that means taking 6 tablets at once in the morning with food. I don't normally eat breakfast, I have to be awake for a while before I can eat something without feeling sick, I have always been like that, so that puts a spanner in the works for a start, but the fact I have to take those 6 tablets, and the Lansoprazole at the same time, makes the whole thing awkward, and the cherry on top of the cake is that Prednisolone tastes like shit. It's like the taste of ear wax if you've ever had the misfortune of tasting that.
At least I can be sure they are actually doing something if I am having side affects, they're not just passing straight through me. In terms of practicality and day to day life, I have to avoid anyone that is sick, avoid anything that may cause infection, be careful about what I eat, and I have to carry a card in my wallet that says I am currently being treated with steroids in the event of any injury etc that a doctor must know to continue the dosage as stopping abruptly can cause serious health problems apparently.
The best and worst yet
Today was, far and away, the worst so far. If it weren't for the nurses today I don't think I could have got through it. I had my Bronchoscopy this morning, my biopsies, and my lung washing. I was most apprehensive about any needles as that is my biggest fear but that was actually the least unpleasant thing. I had a delightful nurse who knew exactly what she was doing and found a vein with ease, I hardly felt it. I had a cannula fitted to the back of my hand for venus access and for the sedative they would give me.
The most unpleasant thing about the whole experience was the anaesthetic that they spray your throat with; I coughed, I spluttered, and felt like I was choking. The anaesthetic makes your throat feel like it is on fire, and the taste was rancid, I was advised patients say it tastes like rotten bananas, and once it hit, I felt that immediately. As you lose the sensation in your throat.
As for the sedative, that didn't work. It made no difference to me at all. I was fully awake, but got through it in the end with the help of the nurses. My actual procedure lasted about 25 minutes in theatre. There were 6 people present, 2 senior nurses, 2 junior nurses, the consultant, and a second doctor. The Fibre Optic Bronchoscope went through the nose. I had to inhale some liquid through it before the scope was inserted - that was a very odd sensation. My right nostril is still rather numb and feels blocked hours later. My head feels like I have a cold and I really want to blow my nose but I am not allowed for 24 hours.
The scope passing over the ridge of my nose and going down was the most uncomfortable part involving the scope, once it was down it went along a lot easier. What surprised me most was how easy it was to breathe whilst the scope was down inside, it didn't feel obstructive at all but I imagine the anaesthetic had a big part to play in that. Once inside the lungs the consultant had a look around, I heard a lot of medical terms I didn't understand. Once they had looked around they took 6 biopsies from various positions, collected a sputum sample [not entirely sure what that is, a type of mucus I gather], and then I had a saline wash. The wash was an odd sensation, rather like the feeling when water goes down the wrong way.
From the moment the anaesthetic was sprayed into my mouth I started to drool uncontrollably. One of the nurses had a suction tube like the dentist would have, they kept the mouth clear for me. I had to cough at several points, each time more spit mixed with pinkish gunk came up. After the wash the scope was removed, that felt very relieving when it came out. I returned to the ward for observation. I had a private room which I was grateful for. Feeling in my tongue and in my throat returned rather quickly, I was able to speak within about 10 minutes. After 45 they tried me with drinking some water, that went down okay. I had some squash and some shortbread after to see how I handled food.
Ever since the procedure I have been coughing up blood in varying amounts, as the locations of the biopsies heal they will bleed somewhat. I've had large globules come up and phlegm. Some of it has been bright red and others have been deep dark red. During my TB test on Tuesday the blood that came out was very dark, almost black, so I am guessing the darker it is the less I need to worry. The coughing up blood has become less frequent now. I have managed to sleep, my mum kept an eye on me. I'm not allowed to be alone for the next 24 hours in case anything happens, so a responsible adult has to stay with me.
This procedure has been the most unpleasant one yet. If it weren't for the nurses I don't think I would have got through it. The CT scan seems like a walk in the park now in comparison.
As for diagnosis, the consultant is confident there is no TB given what she saw today so is happy to progress to treatment. They will still get TB test results in 2 weeks time, along with the biopsies in 1 week, but from all she has seen she is confident the granulomas are benign and have not formed tumours. Only the biopsy results can confirm that diagnosis though, so I am not in the clear yet. Nevertheless they are happy for me to start a course of steroids, which will be Prednisolone. Which is the best outcome I could have hoped for. I have to see my GP to get the actual prescription and to discuss additional medication to mitigate the side effects of the steroids.
I feel relieved, but there is a lingering worry about the results. Until I am told I am all clear, I won't take it for granted.
The most unpleasant thing about the whole experience was the anaesthetic that they spray your throat with; I coughed, I spluttered, and felt like I was choking. The anaesthetic makes your throat feel like it is on fire, and the taste was rancid, I was advised patients say it tastes like rotten bananas, and once it hit, I felt that immediately. As you lose the sensation in your throat.
As for the sedative, that didn't work. It made no difference to me at all. I was fully awake, but got through it in the end with the help of the nurses. My actual procedure lasted about 25 minutes in theatre. There were 6 people present, 2 senior nurses, 2 junior nurses, the consultant, and a second doctor. The Fibre Optic Bronchoscope went through the nose. I had to inhale some liquid through it before the scope was inserted - that was a very odd sensation. My right nostril is still rather numb and feels blocked hours later. My head feels like I have a cold and I really want to blow my nose but I am not allowed for 24 hours.
The scope passing over the ridge of my nose and going down was the most uncomfortable part involving the scope, once it was down it went along a lot easier. What surprised me most was how easy it was to breathe whilst the scope was down inside, it didn't feel obstructive at all but I imagine the anaesthetic had a big part to play in that. Once inside the lungs the consultant had a look around, I heard a lot of medical terms I didn't understand. Once they had looked around they took 6 biopsies from various positions, collected a sputum sample [not entirely sure what that is, a type of mucus I gather], and then I had a saline wash. The wash was an odd sensation, rather like the feeling when water goes down the wrong way.
From the moment the anaesthetic was sprayed into my mouth I started to drool uncontrollably. One of the nurses had a suction tube like the dentist would have, they kept the mouth clear for me. I had to cough at several points, each time more spit mixed with pinkish gunk came up. After the wash the scope was removed, that felt very relieving when it came out. I returned to the ward for observation. I had a private room which I was grateful for. Feeling in my tongue and in my throat returned rather quickly, I was able to speak within about 10 minutes. After 45 they tried me with drinking some water, that went down okay. I had some squash and some shortbread after to see how I handled food.
Ever since the procedure I have been coughing up blood in varying amounts, as the locations of the biopsies heal they will bleed somewhat. I've had large globules come up and phlegm. Some of it has been bright red and others have been deep dark red. During my TB test on Tuesday the blood that came out was very dark, almost black, so I am guessing the darker it is the less I need to worry. The coughing up blood has become less frequent now. I have managed to sleep, my mum kept an eye on me. I'm not allowed to be alone for the next 24 hours in case anything happens, so a responsible adult has to stay with me.
This procedure has been the most unpleasant one yet. If it weren't for the nurses I don't think I would have got through it. The CT scan seems like a walk in the park now in comparison.
As for diagnosis, the consultant is confident there is no TB given what she saw today so is happy to progress to treatment. They will still get TB test results in 2 weeks time, along with the biopsies in 1 week, but from all she has seen she is confident the granulomas are benign and have not formed tumours. Only the biopsy results can confirm that diagnosis though, so I am not in the clear yet. Nevertheless they are happy for me to start a course of steroids, which will be Prednisolone. Which is the best outcome I could have hoped for. I have to see my GP to get the actual prescription and to discuss additional medication to mitigate the side effects of the steroids.
I feel relieved, but there is a lingering worry about the results. Until I am told I am all clear, I won't take it for granted.
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