In my last post I mentioned that I am waiting for a Fibre Optic Bronchoscopy in September; as well as that appointment I have also been told I will be having a TB Blood Test a few days before it. I'm a little confused as to why they have asked for it considering I have had a chest X-Ray and a CT scan and the NHS articles about TB indicate those are the main method of diagnosing the condition. In my mind that means they should know whether I have that or not, so that leaves me wondering why they need to do the test.
When I found out I was having a CT scan, the articles discussing their use said that they are not used for screening, that they were only used to confirm a diagnosis not to help make one. That has led me to wonder whether the blood test for TB will be in the same vein [no pun intended] of being a test that is done to confirm a diagnosis rather than screening. I have no idea whether that is the case and I have had no communication with the consultant or the doctors to be able to discuss that. Really one of the worst parts of this whole experience has been the lack of communication and the waiting. The longer I wait the more my mind wanders, and yes, the more I Google things.
I know many people say you shouldn't Google anything or that you shouldn't read anything - I disagree with that. Uncertainty is hard to deal with, and anxiety peaks and troughs in an inverted correlation with the amount of detail you know. The less you know the more you worry, and the more you know and understand, the less worry the whole process evokes.
My mind will automatically go to the worst case scenario and dream up horrible visions of what you will endure; knowing more about something can eradicate much of this by providing reassurance. There seems to be an attitude that the less a patient is told the easier it will be for them to handle the whole experience, I don't know how that works for other people but for me that's one of the worst things you can do. If you leave me to my imagination, thinking it will be reassuring, then bitch you severely underestimate the depth and darkness my imagination can dream up.
As a general update to my condition however, there have been new symptoms that have developed which in themselves are causing me worry. I've noticed changes to my vision which I want to discuss with my Ophthalmologist, I also want them to be aware of my diagnosis since as far as I am aware no-one has told them and Sarcoidosis can affect the eyes so I want them to keep an eye on it - again no pun intended.
It's rather disheartening to be sent for test after test, and to receive more referrals for more tests, it's making me wonder what else they will find. I've read a bit about TB and from what I gather there's two main types of it, latent and active, the former can be treated with antibiotics, the latter however can be difficult to treat. It also doesn't help that the latter has a 50% survival rate if it isn't treated. The sense of urgency is creeping into my mind now and that's making me evermore anxious about how long I am waiting. Time can't move quick enough. I'm counting down the days, half in anxiety over what is to come, and half in anxiety over how long it has already been.
Last But Not Least
In my last post I wrote at length about the CT scan I went through. That feels like so long ago now, it's hard to believe tomorrow it will only be two weeks. A few days after the scan I got a phone call from the hospital telling me I had been booked in for a Lung Function Test. I went for that on Friday past, little over a week after the CT scan.
The tests carried out on my lungs were tiring but not to the same extent as the day I had the CT scans. I was expecting a treadmill and a breathing tube, as that's the vision I always had in my head as to what this sort of thing involved but it was nothing of the sort. It was quite relaxed actually. The Doctor that took me through the tests was a very nice woman who put me at ease with mutual disdain for needles and assured me the procedure was non invasive which helped me relax.
The tests themselves were a little awkward. They all involved a mouthpiece attached to a robotic arm with a computer controlling the airflow. The first step was to measure normal breathing so I had to breathe through the mouthpiece for a while just to get a reading. The second test was a spirometry test which measures how quickly air can get in and out of the lungs and also gives an idea of the size of the lungs. That involved a very deep breath quickly, and pushed out quickly. My results for the test indicated there was some restriction in breathing; on the screen you can see a loop which charts the intake and outflow of air, my loop wasn't fully formed and was a little flat on the outflow. The test was repeated a few times to establish an average of the results.
After the spirometry test I had to do a similar test this time involving a tracer gas. You breathe in deeply through the mouthpiece and hold your breath for about 8 seconds and then breathe out again; whilst breathing in, a certain amount of the tracer gas is added, and then measured when you exhale to determine how efficient the lungs are at filtering.
The next test was similar to the tracer gas test, this time an aerosol was released when breathing in, I felt some of this powder in my throat when breathing in, but it wasn't unpleasant. After both of these tests you had to sit for several minutes to return to normal breathing. Another test like the first was carried out, this time checking to see how long it took you to return to normal breathing after being exerted.
All in all, these were the least unpleasant tests I've had to do so far, the CT was by far the most unpleasant, with the blood tests being around the middle.
It's only been 4 days since the lung function test but I have spoken to my GP and my consultant has reviewed the results and they have settled on their diagnosis, I do have Sarcoidosis.
There's just one more thing to do and that's causing me some anxiety. Due to the nature of Sarcoidosis, small growths occur called granulomas, these are a lot like tumours but they do not grow in size. They form when the immune system tries to "quarantine" an infection by covering it in cells. The key distinction is that tumours are abnormal growths in tissue, whereas granulomas are an overactive response by the immune system to an infection.
The two look very similar and it's important to differentiate, so I have one last test to do before they can safely rule out everything else. In September I will have a Fibre Optic Bronchoscopy which involves a camera on a thin tube being inserted through the nose, down into the lungs. During the procedure I will be sedated [thank fuck] and a biopsy of the tissue will be taken to verify they are granulomas not tumours. The operation itself only takes around half an hour and will be done first thing in the morning [8:30am] but I will have to stay in the hospital for several hours afterwards until everything wears off. Not gonna lie, really anxious about this one. It's the last test, and the last chance for anything to go wrong. I've been advised that everything in my results right now points to Sarcoidosis and it's very unlikely at this stage that it would be anything else, but the biopsy is still needed to make that definite.
There is some relief in knowing the diagnosis, of course this now paves the way to research everything about the disease in the knowledge that, this is what I have. Google can be your best friend and your worst enemy at a time like this, and the sites I have read through so far have similar descriptions, but vary wildly in their prognoses. The statistics aren't consistent either in terms of the percentages of people that have acute versus chronic [short term and long term] cases of the disease. Some have said the acute version lasts 12 months, others 24, while the information on chronic varies from insistence that you have chronic since birth, to others saying it can be onset in the early 20s through to late 30s. Sifting through all of the information is rather overwhelming.
I haven't actually seen or spoke to my consultant yet. My GP has advised I may see the consultant after the operation in September, or I may have a follow up appointment made soon after. In any case, going forward, the most likely treatment will be a course of steroids due to how far along my Sarcoidosis has progressed. For most people who get it, the condition remedies itself eventually and doesn't need treating [as in the acute diagnosis] for some it does remain acute but does need treated due to the severity of the symptoms - so I may have severe acute Sarcoidosis - for others the condition become chronic, and treatment turns to condition management rather than an attempt at expediting recovery. It's important to note here there is no "cure" there's no drug you can take to stop it or make it go away, the steroids I may be prescribed are to counteract the symptoms, not to remove the cause as the cause is unknown.
From what I have read the steroids that may be prescribed are called Prednisolone, although in some cases if the condition has progressed further then Methotrexate is prescribed - which isn't a steroid, it's an antimetabolite, which I gather is basically an immune suppressor, the intent being to weaken the immune system so it's reaction isn't as severe. They both carry certain risks though and I may be prescribed other medications to counter some of the side affects which means more tablets. I'm sick taking cocodamol as it is, I'm not sure how it's going to feel taking so many tablets everyday. The one reassurance is that the steroids are the lesser of the two in that they are prescribed in 3-month blocks, and long term usage is discouraged as they can cause thinning of your bones so it would likely be the shorter course if they were prescribed.
I don't know what to expect going forward. Right now the Bronchoscopy is occupying my mind the most, I have been told it shouldn't be painful though so that's one saving grace, although the information pack the hospital provided mentions local anesthetic via an oral spray, and a sedative via an IV which will mean another cannula, oh joy. Also I'd avoid reading WebMD, the article on there about Bronchoscopy mentions possible complications and very nonchalant in adding "very small chance of death" to the list - that's totally not terrifying at all for someone who's just looking for information to feel less anxious about the whole thing, thanks WebMD.
The tests carried out on my lungs were tiring but not to the same extent as the day I had the CT scans. I was expecting a treadmill and a breathing tube, as that's the vision I always had in my head as to what this sort of thing involved but it was nothing of the sort. It was quite relaxed actually. The Doctor that took me through the tests was a very nice woman who put me at ease with mutual disdain for needles and assured me the procedure was non invasive which helped me relax.
The tests themselves were a little awkward. They all involved a mouthpiece attached to a robotic arm with a computer controlling the airflow. The first step was to measure normal breathing so I had to breathe through the mouthpiece for a while just to get a reading. The second test was a spirometry test which measures how quickly air can get in and out of the lungs and also gives an idea of the size of the lungs. That involved a very deep breath quickly, and pushed out quickly. My results for the test indicated there was some restriction in breathing; on the screen you can see a loop which charts the intake and outflow of air, my loop wasn't fully formed and was a little flat on the outflow. The test was repeated a few times to establish an average of the results.
After the spirometry test I had to do a similar test this time involving a tracer gas. You breathe in deeply through the mouthpiece and hold your breath for about 8 seconds and then breathe out again; whilst breathing in, a certain amount of the tracer gas is added, and then measured when you exhale to determine how efficient the lungs are at filtering.
The next test was similar to the tracer gas test, this time an aerosol was released when breathing in, I felt some of this powder in my throat when breathing in, but it wasn't unpleasant. After both of these tests you had to sit for several minutes to return to normal breathing. Another test like the first was carried out, this time checking to see how long it took you to return to normal breathing after being exerted.
All in all, these were the least unpleasant tests I've had to do so far, the CT was by far the most unpleasant, with the blood tests being around the middle.
It's only been 4 days since the lung function test but I have spoken to my GP and my consultant has reviewed the results and they have settled on their diagnosis, I do have Sarcoidosis.
There's just one more thing to do and that's causing me some anxiety. Due to the nature of Sarcoidosis, small growths occur called granulomas, these are a lot like tumours but they do not grow in size. They form when the immune system tries to "quarantine" an infection by covering it in cells. The key distinction is that tumours are abnormal growths in tissue, whereas granulomas are an overactive response by the immune system to an infection.
The two look very similar and it's important to differentiate, so I have one last test to do before they can safely rule out everything else. In September I will have a Fibre Optic Bronchoscopy which involves a camera on a thin tube being inserted through the nose, down into the lungs. During the procedure I will be sedated [thank fuck] and a biopsy of the tissue will be taken to verify they are granulomas not tumours. The operation itself only takes around half an hour and will be done first thing in the morning [8:30am] but I will have to stay in the hospital for several hours afterwards until everything wears off. Not gonna lie, really anxious about this one. It's the last test, and the last chance for anything to go wrong. I've been advised that everything in my results right now points to Sarcoidosis and it's very unlikely at this stage that it would be anything else, but the biopsy is still needed to make that definite.
There is some relief in knowing the diagnosis, of course this now paves the way to research everything about the disease in the knowledge that, this is what I have. Google can be your best friend and your worst enemy at a time like this, and the sites I have read through so far have similar descriptions, but vary wildly in their prognoses. The statistics aren't consistent either in terms of the percentages of people that have acute versus chronic [short term and long term] cases of the disease. Some have said the acute version lasts 12 months, others 24, while the information on chronic varies from insistence that you have chronic since birth, to others saying it can be onset in the early 20s through to late 30s. Sifting through all of the information is rather overwhelming.
I haven't actually seen or spoke to my consultant yet. My GP has advised I may see the consultant after the operation in September, or I may have a follow up appointment made soon after. In any case, going forward, the most likely treatment will be a course of steroids due to how far along my Sarcoidosis has progressed. For most people who get it, the condition remedies itself eventually and doesn't need treating [as in the acute diagnosis] for some it does remain acute but does need treated due to the severity of the symptoms - so I may have severe acute Sarcoidosis - for others the condition become chronic, and treatment turns to condition management rather than an attempt at expediting recovery. It's important to note here there is no "cure" there's no drug you can take to stop it or make it go away, the steroids I may be prescribed are to counteract the symptoms, not to remove the cause as the cause is unknown.
From what I have read the steroids that may be prescribed are called Prednisolone, although in some cases if the condition has progressed further then Methotrexate is prescribed - which isn't a steroid, it's an antimetabolite, which I gather is basically an immune suppressor, the intent being to weaken the immune system so it's reaction isn't as severe. They both carry certain risks though and I may be prescribed other medications to counter some of the side affects which means more tablets. I'm sick taking cocodamol as it is, I'm not sure how it's going to feel taking so many tablets everyday. The one reassurance is that the steroids are the lesser of the two in that they are prescribed in 3-month blocks, and long term usage is discouraged as they can cause thinning of your bones so it would likely be the shorter course if they were prescribed.
I don't know what to expect going forward. Right now the Bronchoscopy is occupying my mind the most, I have been told it shouldn't be painful though so that's one saving grace, although the information pack the hospital provided mentions local anesthetic via an oral spray, and a sedative via an IV which will mean another cannula, oh joy. Also I'd avoid reading WebMD, the article on there about Bronchoscopy mentions possible complications and very nonchalant in adding "very small chance of death" to the list - that's totally not terrifying at all for someone who's just looking for information to feel less anxious about the whole thing, thanks WebMD.
Answers and Questions
Yesterday was an unexpected day for me, eventful by all accounts, and in some ways a relief but not so in others, as is so often the case I ended up with more questions than I had answers.
I had been waiting for an appointment with a consultant about my ongoing health problems as detailed in previous posts. To my surprise I got a phone call from the hospital yesterday morning saying my consultant who I haven't seen yet, had requested a CT scan and they were to arrange a booking. Trying to work out a date I ended up asking if there were any sooner than those offered as they weren't convenient and I was offered a cancellation for the same day which I accepted. Without time to think and worry about what was happening, the practicalities overtook the focus of my mind. I went about preparing for the scans and traveled to the hospital. I booked in when I arrived and sat down with my Mum who went with me.
Sitting waiting to be seen was, for the first time, a moment of anxiety. I started to overthink things and the one question that repeated in my head was, why had the consultant sent me straight for a scan without seeing me, what had he read in my notes that made him send me for one straight away, what did he suspect? I still haven't got an answer to this question and what's more is something else that happened later added to this worry.
After waiting for about 15 minutes I was called in and met the assistant radiographer. They explained the process and read my notes that a chest scan was needed. As I lay down on the scanner the lead radiographer came in and asked us to stop. The consultant had changed the particulars of my scan, I was to have multiple scans rather than just one, and a contrast was required. So I had to return to the waiting area where I was given about a litre of water with the contrast solution in it, which I had to drink over the space of an hour so that my colon would show up on the scan.
As I sat with Mum for an hour drinking the contrast my mind started racing. Why did the consultant want to see my colon? Why was I having a full body scan not just the lungs? My mind is still mulling over these things but a lot of angst stems from the fact that CT scans in general are heavily associated with Cancer. On the NHS website where you see the list of things CT scans are used to diagnose, the majority are Cancer related, the scanner itself is in the Cancer wing of the hospital, and everywhere on walls in the hospital are posters about coping with Cancer diagnoses. No-one has said to me that it is even a possibility at this stage but seeing it everywhere is very disconcerting.
That contrast solution I was told is odorless and tasteless - it's not. It tasted like chalk to me, it looked just like water but as I was drinking it, about 20 minutes in I felt my body react, it became harder to drink it, by the end I was forcing myself to drink it. It felt like my body had realised "this isn't just water" - to the point I thought I might throw up but I was able to keep it down. The contrast solution is used to allow the scan to see inside joints and to highlight organs better on the scan.
After an hour I was called in again and this time had a form to sign and I was asked a few questions about medication and conditions, did I have diabetes or asthma etc. I was then told I'd be getting an injection at which point I think my heart stopped, I am so afraid of needles, injections are a nightmare for me and all the blood tests I have had in the past few months have been for the most part unpleasant, the nurses being the only thing helping me through it, they've all been delightful. I lay down on the scanner bed and the radiographer looked for a vein to use. My veins run very deep, getting one is hard. She spent a few minutes looking for one to use which I appreciated because I've had blood tests that felt rushed that left me literally black and blue before. She found one that was suitable and then inserted a cannula into my arm. That was a thoroughly unpleasant experience for me, it's one thing having an injection when scared of needles, it's another to have a needle that STAYS in your arm. I was more worried about that at this point than the actual scans.
The lead radiographer was explaining everything to the assistant as she went along, so I gather this test is rare. The cannula was connected to an injection pump machine which they would control from the next room. Nothing had been injected yet. They positioned me with arms above my head through the polo shaped hole. They left the room and the machine whirred into motion. I had two scans of my abdomen and lower body. The first was done without the injection. I went through the ring twice and then came to rest. That was an odd sensation as the machine itself has a voice that speaks to you telling you when to breathe and when to hold your breath.
The radiographer then spoke through an intercom and told me the injection would come now. I lay there waiting a few seconds then I felt my entire body flush with heat, every inch of it felt like it was on fire. This is a radioactive dye test, and as I gather, it is used to see inside the heart and to diagnose circulatory and coronary diseases. I felt so hot, like I was sweating out of every pore. The second scan started and I concentrated on it, breathing and holding when instructed.
After these two scans the radiographers returned to adjust my position for the next two scans. I saw the injection tubing connected to the cannula and I saw the vacuum canister attached to the tube as it passed through the machine when they changed my position. The canister was about the thickness of a can of coke, was made from glass I think, and had a large silver metal inside it and had what looked like a black liquid. They left the room again and I lay flat with arms at my side and no head support this time. Again I had the first scan normally, and then before the second scan I was advised the injection was coming, and again I felt it wash over me and the heat intensified again. The second scan was completed and then the radiographers returned.
I sat up at this point and as I did the whole room moved and I thought I might pass out. The radiographer told me to sit for a few moments, they got me some water to drink. I sat for a few minutes then moved to a small isolated seating area where they asked me to stay for a while so I did. I drank some more water and sat for a while until the lightheadedness passed.
For the rest of the day I had hot and cold flushes, and at one point I felt like literally everything below my diaphragm moved. I had to steady myself, luckily we weren't far from home when that happened. When I got home I had to rush to the toilet. For the next few hours I had diarrhoea and peed a lot. I was advised for the next 48 hours I would have to drink a lot of water, and was told if any rashes appeared to call a doctor immediately.
This is about 18 hours later for me now, the diarrhoea has stopped thankfully. Nausea has come and gone and for a while I lost my appetite but that has returned. I'm still peeing a lot more than normal but that's to be expected I guess. The results will go to the consultant, and the consultant will send a report to the doctor that referred me, which was my GP, so I will find out within 3 to 4 weeks what the results are. Questions still race and more keep occurring to me. I have known other people get these scans and the only ones I know who have had the dye injected as well as the contrast are those that were diagnosed with Cancer which is fueling my paranoia.
I know I may be adding 2 and 2 and getting 5. I know it will probably be something trivial, or something mild that they can treat. Still the thought remains in my mind, what if it isn't? People tell me not to think about it, but that's easier said than done, and it's not who I am. I expect the worst in most scenarios, I want the best, but I expect the worst cause then if it happens you were prepared and if it doesn't then literally everything is a positive. It also doesn't help that the NHS website clearly says they avoid using CT scans for screening as the benefits do not outweigh the risks - meaning they don't send you for one unless you have symptoms of something that needs one, which brings you back to that list of things they are used for. As I said in previous posts my GP has suspected Sarcoidosis in my lungs, that brings me back to the consultant changing the particulars of my scan, what does he want to see in my colon, if the problem is in my lungs?
I'm relieved that things are progressing and it feels like something is being done but I'm left with even more questions than I had before. I'm still having the odd hot flush but those are much more spaced out now, as in once every few hours rather than every few minutes as they had been yesterday. I've also been able to remove the bandage that was covering the insertion point where the cannula was, that thing felt like it was stuck on with super glue.
I don't know what to expect next. I want answers more than anything, and despite all the anxiety, the desire to know exactly what's wrong is overpowering it. I know there is something wrong and I know it's not normal for me, this is week 18 now since the symptoms started, week 14 since first seeing a doctor about everything, and I waited 9 weeks to see a consultant, which I probably won't see at all now since he sent me straight for the CT scan and that goes back to my GP.
I feel like a voodoo doll, I've had needles in me, left and right, I've been tested for so many things, the list of possibilities is getting shorter. The panicked reactions of what it could be, as a gay man the obvious one is HIV and other STI type things, they were all pursued months ago and everything came back negative, I don't have a thyroid, I don't have asthma, I don't have diabetes, it's not rheumatoid arthritis, at this point the only things left are conditions like Cancer where I always thought "that wouldn't happen to me" - I don't smoke, I very rarely drink [only Christmas time mainly], I've never done drugs, the only prescription I've ever been on before was Pen-V for tonsillitis. Apart from my Nystagmus I've never had any medical conditions before.
One of the worrying things about this whole thing though has been the surprising amount of people in the family that have had Cancer which I did not know about. My family tree is complicated to say the least so there's an excuse for some ignorance, but not only Cancer, I have discovered there's a whole slew of medical conditions people have which I had no idea about until I started asking questions. Relatives I thought were perfectly healthy, and even some who are dead who I thought died of natural causes I have now learned had everything under the sun.
I find it surprising how little people actually talk about their health until you start opening up about your own. I always thought that was just something that happened with mental health but it turns out the same is true for physical health too, why is it we are so ashamed to talk about it? I wrote this post as I established a precedent months ago that I wanted to share what was happening, both for anyone that is interested and for myself to look back on in years to come and see what I went through and what I thought and felt at the time. I hope it helps someone, I hope it sheds some light or answers some questions for anyone out there - even if only to know things aren't straight forward and that it takes time to find answers, if you find them at all.
I had been waiting for an appointment with a consultant about my ongoing health problems as detailed in previous posts. To my surprise I got a phone call from the hospital yesterday morning saying my consultant who I haven't seen yet, had requested a CT scan and they were to arrange a booking. Trying to work out a date I ended up asking if there were any sooner than those offered as they weren't convenient and I was offered a cancellation for the same day which I accepted. Without time to think and worry about what was happening, the practicalities overtook the focus of my mind. I went about preparing for the scans and traveled to the hospital. I booked in when I arrived and sat down with my Mum who went with me.
Sitting waiting to be seen was, for the first time, a moment of anxiety. I started to overthink things and the one question that repeated in my head was, why had the consultant sent me straight for a scan without seeing me, what had he read in my notes that made him send me for one straight away, what did he suspect? I still haven't got an answer to this question and what's more is something else that happened later added to this worry.
After waiting for about 15 minutes I was called in and met the assistant radiographer. They explained the process and read my notes that a chest scan was needed. As I lay down on the scanner the lead radiographer came in and asked us to stop. The consultant had changed the particulars of my scan, I was to have multiple scans rather than just one, and a contrast was required. So I had to return to the waiting area where I was given about a litre of water with the contrast solution in it, which I had to drink over the space of an hour so that my colon would show up on the scan.
As I sat with Mum for an hour drinking the contrast my mind started racing. Why did the consultant want to see my colon? Why was I having a full body scan not just the lungs? My mind is still mulling over these things but a lot of angst stems from the fact that CT scans in general are heavily associated with Cancer. On the NHS website where you see the list of things CT scans are used to diagnose, the majority are Cancer related, the scanner itself is in the Cancer wing of the hospital, and everywhere on walls in the hospital are posters about coping with Cancer diagnoses. No-one has said to me that it is even a possibility at this stage but seeing it everywhere is very disconcerting.
That contrast solution I was told is odorless and tasteless - it's not. It tasted like chalk to me, it looked just like water but as I was drinking it, about 20 minutes in I felt my body react, it became harder to drink it, by the end I was forcing myself to drink it. It felt like my body had realised "this isn't just water" - to the point I thought I might throw up but I was able to keep it down. The contrast solution is used to allow the scan to see inside joints and to highlight organs better on the scan.
After an hour I was called in again and this time had a form to sign and I was asked a few questions about medication and conditions, did I have diabetes or asthma etc. I was then told I'd be getting an injection at which point I think my heart stopped, I am so afraid of needles, injections are a nightmare for me and all the blood tests I have had in the past few months have been for the most part unpleasant, the nurses being the only thing helping me through it, they've all been delightful. I lay down on the scanner bed and the radiographer looked for a vein to use. My veins run very deep, getting one is hard. She spent a few minutes looking for one to use which I appreciated because I've had blood tests that felt rushed that left me literally black and blue before. She found one that was suitable and then inserted a cannula into my arm. That was a thoroughly unpleasant experience for me, it's one thing having an injection when scared of needles, it's another to have a needle that STAYS in your arm. I was more worried about that at this point than the actual scans.
The lead radiographer was explaining everything to the assistant as she went along, so I gather this test is rare. The cannula was connected to an injection pump machine which they would control from the next room. Nothing had been injected yet. They positioned me with arms above my head through the polo shaped hole. They left the room and the machine whirred into motion. I had two scans of my abdomen and lower body. The first was done without the injection. I went through the ring twice and then came to rest. That was an odd sensation as the machine itself has a voice that speaks to you telling you when to breathe and when to hold your breath.
The radiographer then spoke through an intercom and told me the injection would come now. I lay there waiting a few seconds then I felt my entire body flush with heat, every inch of it felt like it was on fire. This is a radioactive dye test, and as I gather, it is used to see inside the heart and to diagnose circulatory and coronary diseases. I felt so hot, like I was sweating out of every pore. The second scan started and I concentrated on it, breathing and holding when instructed.
After these two scans the radiographers returned to adjust my position for the next two scans. I saw the injection tubing connected to the cannula and I saw the vacuum canister attached to the tube as it passed through the machine when they changed my position. The canister was about the thickness of a can of coke, was made from glass I think, and had a large silver metal inside it and had what looked like a black liquid. They left the room again and I lay flat with arms at my side and no head support this time. Again I had the first scan normally, and then before the second scan I was advised the injection was coming, and again I felt it wash over me and the heat intensified again. The second scan was completed and then the radiographers returned.
I sat up at this point and as I did the whole room moved and I thought I might pass out. The radiographer told me to sit for a few moments, they got me some water to drink. I sat for a few minutes then moved to a small isolated seating area where they asked me to stay for a while so I did. I drank some more water and sat for a while until the lightheadedness passed.
For the rest of the day I had hot and cold flushes, and at one point I felt like literally everything below my diaphragm moved. I had to steady myself, luckily we weren't far from home when that happened. When I got home I had to rush to the toilet. For the next few hours I had diarrhoea and peed a lot. I was advised for the next 48 hours I would have to drink a lot of water, and was told if any rashes appeared to call a doctor immediately.
This is about 18 hours later for me now, the diarrhoea has stopped thankfully. Nausea has come and gone and for a while I lost my appetite but that has returned. I'm still peeing a lot more than normal but that's to be expected I guess. The results will go to the consultant, and the consultant will send a report to the doctor that referred me, which was my GP, so I will find out within 3 to 4 weeks what the results are. Questions still race and more keep occurring to me. I have known other people get these scans and the only ones I know who have had the dye injected as well as the contrast are those that were diagnosed with Cancer which is fueling my paranoia.
I know I may be adding 2 and 2 and getting 5. I know it will probably be something trivial, or something mild that they can treat. Still the thought remains in my mind, what if it isn't? People tell me not to think about it, but that's easier said than done, and it's not who I am. I expect the worst in most scenarios, I want the best, but I expect the worst cause then if it happens you were prepared and if it doesn't then literally everything is a positive. It also doesn't help that the NHS website clearly says they avoid using CT scans for screening as the benefits do not outweigh the risks - meaning they don't send you for one unless you have symptoms of something that needs one, which brings you back to that list of things they are used for. As I said in previous posts my GP has suspected Sarcoidosis in my lungs, that brings me back to the consultant changing the particulars of my scan, what does he want to see in my colon, if the problem is in my lungs?
I'm relieved that things are progressing and it feels like something is being done but I'm left with even more questions than I had before. I'm still having the odd hot flush but those are much more spaced out now, as in once every few hours rather than every few minutes as they had been yesterday. I've also been able to remove the bandage that was covering the insertion point where the cannula was, that thing felt like it was stuck on with super glue.
I don't know what to expect next. I want answers more than anything, and despite all the anxiety, the desire to know exactly what's wrong is overpowering it. I know there is something wrong and I know it's not normal for me, this is week 18 now since the symptoms started, week 14 since first seeing a doctor about everything, and I waited 9 weeks to see a consultant, which I probably won't see at all now since he sent me straight for the CT scan and that goes back to my GP.
I feel like a voodoo doll, I've had needles in me, left and right, I've been tested for so many things, the list of possibilities is getting shorter. The panicked reactions of what it could be, as a gay man the obvious one is HIV and other STI type things, they were all pursued months ago and everything came back negative, I don't have a thyroid, I don't have asthma, I don't have diabetes, it's not rheumatoid arthritis, at this point the only things left are conditions like Cancer where I always thought "that wouldn't happen to me" - I don't smoke, I very rarely drink [only Christmas time mainly], I've never done drugs, the only prescription I've ever been on before was Pen-V for tonsillitis. Apart from my Nystagmus I've never had any medical conditions before.
One of the worrying things about this whole thing though has been the surprising amount of people in the family that have had Cancer which I did not know about. My family tree is complicated to say the least so there's an excuse for some ignorance, but not only Cancer, I have discovered there's a whole slew of medical conditions people have which I had no idea about until I started asking questions. Relatives I thought were perfectly healthy, and even some who are dead who I thought died of natural causes I have now learned had everything under the sun.
I find it surprising how little people actually talk about their health until you start opening up about your own. I always thought that was just something that happened with mental health but it turns out the same is true for physical health too, why is it we are so ashamed to talk about it? I wrote this post as I established a precedent months ago that I wanted to share what was happening, both for anyone that is interested and for myself to look back on in years to come and see what I went through and what I thought and felt at the time. I hope it helps someone, I hope it sheds some light or answers some questions for anyone out there - even if only to know things aren't straight forward and that it takes time to find answers, if you find them at all.
Waiting
I'm finding it hard to cope with life at the moment. To be blunt, I don't have the energy to do very much and that's really getting to me. In my previous post I spoke about my health problems that I am going through. As an update to that post, I am still waiting to see a consultant. My aches and pains have varied in waves; at the moment I'm going through a resurgence, they had weakened for a time and they are now increasing again.
The pains alone would be manageable as I am taking medication which for the moment is still effective. The trouble is I have no energy and feel tired all the time. In the last five days I have slept between 12 and 14 hours asleep each day. The longest has been 16, and the shortest has been 10. I'm starting to spend more time asleep than I am awake and that's really making life difficult.
Sleeping so much leaves me little time to do much when I am awake, before we even get to the persistent breathing problems that are making even the simplest physical activity strenuous.
I'm tired. Not just physically but mentally too. While all of this is happening to me, I am aware of other people going through health troubles, those range from trivial issues right through to Cancer. The latter of which took me by surprise when I found out their diagnosis.
I'm struggling to hold onto the positives in life right now and I'm finding less and less places to turn to try and find them. That's making life depressing, and I don't mean in the melodramatic exaggerations of sadness, I mean genuine depression. I've been through it years ago and I recognize much of what is happening to me but that hasn't helped me to stop it or overcome it. If anything it is fueling anxiety that it is inevitable. I feel myself being enveloped in darkness, like the dark clouds that had covered the sky have started to descend and shroud my view to the point where I can see nothing before me.
I wish I could end this post on a happy note but there's really nothing I can offer. My life at the moment revolves around waiting. Waiting for Doctors, waiting for results, waiting for medications to kick in, and sleep. No matter how much I sleep I don't feel rested, I don't feel refreshed.
The pains alone would be manageable as I am taking medication which for the moment is still effective. The trouble is I have no energy and feel tired all the time. In the last five days I have slept between 12 and 14 hours asleep each day. The longest has been 16, and the shortest has been 10. I'm starting to spend more time asleep than I am awake and that's really making life difficult.
Sleeping so much leaves me little time to do much when I am awake, before we even get to the persistent breathing problems that are making even the simplest physical activity strenuous.
I'm tired. Not just physically but mentally too. While all of this is happening to me, I am aware of other people going through health troubles, those range from trivial issues right through to Cancer. The latter of which took me by surprise when I found out their diagnosis.
I'm struggling to hold onto the positives in life right now and I'm finding less and less places to turn to try and find them. That's making life depressing, and I don't mean in the melodramatic exaggerations of sadness, I mean genuine depression. I've been through it years ago and I recognize much of what is happening to me but that hasn't helped me to stop it or overcome it. If anything it is fueling anxiety that it is inevitable. I feel myself being enveloped in darkness, like the dark clouds that had covered the sky have started to descend and shroud my view to the point where I can see nothing before me.
I wish I could end this post on a happy note but there's really nothing I can offer. My life at the moment revolves around waiting. Waiting for Doctors, waiting for results, waiting for medications to kick in, and sleep. No matter how much I sleep I don't feel rested, I don't feel refreshed.
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