We all know that smoking is bad. The amount of publicity anti smoking ads get and the fact that (at least here in Australia anyway) places that sell tobacco do not have tobacco brands and advertising everywhere but have really gross pictures of smoking related health issues and bold written warnings.
This website is a really cleaver and graphic way of explaining what smoking can do to harm you. Take a look and stay well:)
Tobacco Body
Showing posts with label disease. Show all posts
Showing posts with label disease. Show all posts
Wednesday, October 9, 2013
Tuesday, May 21, 2013
Am I cured?
It is the four letter "c" word that send shivers down the spine of any doctor or health care professional. Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word. Yes, I am talking about cure.
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Saturday, January 7, 2012
Why are doctors conservative?
I caught up with an old friend for the first time in ages last week. It would have been almost ten years and wow, how things have changed. Ten years ago if we arranged to catch up we probably would have met at a cafe, restaurant or pub. Now we met at a playground so the kids could run around and we could have at least five minutes uninterrupted adult conversation before the inevitable scraped knee or "dad, can you push me on the swing?"
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
Monday, December 5, 2011
If I'm Glowing, Just Turn me Off.
In the last two weeks I have had a head CT, a sinus CT, a chest x-ray and a KUB (Kidneys Ureter and Bladder.) After being exposed to all that radiation I wouldn't be surprised if I glow in the dark! But I'm hoping it will not be in vain. After all, we don't do these things because they are easy, we do them because they are worth it.
I guess I do have a point to make. All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two. I have had a pretty busy couple of weeks and it's not letting up just yet. To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram. And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.
Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point. At the moment I am pretty well. I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.
I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else. So spare a thought for the chronically ill. Try doing a full time job with all that going on. On top of that, there is living with your disease that is also tiring. And all the other inconveniences. Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc..... Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....
Living like this is a full time job. It's exhausting and tiring. And I think I talk for all patients when I say this. We didn't ask for are disease, yet we have no choice but to deal with it. And I have to say that most patients I have had the pleasure of talking to are very brave and resilient. But patients are people too, and just like all people they have bad days and bad moods. So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack. We don't mean it and we are dealing with a lot. Until next time, stay well:)
I guess I do have a point to make. All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two. I have had a pretty busy couple of weeks and it's not letting up just yet. To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram. And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.
Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point. At the moment I am pretty well. I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.
I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else. So spare a thought for the chronically ill. Try doing a full time job with all that going on. On top of that, there is living with your disease that is also tiring. And all the other inconveniences. Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc..... Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....
Living like this is a full time job. It's exhausting and tiring. And I think I talk for all patients when I say this. We didn't ask for are disease, yet we have no choice but to deal with it. And I have to say that most patients I have had the pleasure of talking to are very brave and resilient. But patients are people too, and just like all people they have bad days and bad moods. So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack. We don't mean it and we are dealing with a lot. Until next time, stay well:)
Thursday, November 10, 2011
My Monthly Dose of Boring
Anyone with CIDP, or any autoimmune disease that requires Intravenous Immunoglobulin (IVIG) infusions will know that there is really not that much to look forward to. Just to let you know what it is like, you sit in one of those comfortable hospital recliners while a nurse sticks you with an IV and you sit there all day whilst watching the drip, drip, drip of the IVIG as it is slowly infused into your body over six hours.
I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard. Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.
Yes, the process is boring. Yes, it is long. Yes, you do feel like crap afterwards and yes, that day for me is tomorrow. I feel as if I have started this post off on a really negative note, but two things. First, it is not all bad. Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.
Firstly, decent preparation. I find that if I have got the body going and the heart pumping a bit before I get to the hospital. If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion. So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.) I like a big breakfast and lots of fluids to up the blood volume and vein size. Lastly I pump a stress ball all the way to hospital to really get the veins up. It is also important to stay warm so your veins don't shrink inside your arms.
Secondly, combating the boredom. Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies. Right now I am downloading three movies onto my computer for tomorrow. I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.
Thirdly, the nausea. Although I have never actually been sick I have still felt nauseated. I find a simple remedy for this is to keep snacking. The hospital supplies a never ending supply of cheese and crackers, so I am always eating them. I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.
Fourthly, the headache. Nasty headaches are a side effect of IVIG, and prevention is the best cure. IVIG pushes up your blood volume, which increases your blood pressure. Your body combats this by expelling water, causing dehydration. Blood pressure plus dehydration equals headache. To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.
Lastly, a couple of general pieces of advice. Get someone to drive you or catch a cab. There is a good chance you won't feel like driving home. Second, be nice to the nurses. They do a great job and do the best they can. If you are not nice to them they will not be nice back to you. If I feel up to it I willl let you know how it went tomorrow. Until then, stay well:)
I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard. Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.
Yes, the process is boring. Yes, it is long. Yes, you do feel like crap afterwards and yes, that day for me is tomorrow. I feel as if I have started this post off on a really negative note, but two things. First, it is not all bad. Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.
Firstly, decent preparation. I find that if I have got the body going and the heart pumping a bit before I get to the hospital. If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion. So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.) I like a big breakfast and lots of fluids to up the blood volume and vein size. Lastly I pump a stress ball all the way to hospital to really get the veins up. It is also important to stay warm so your veins don't shrink inside your arms.
Secondly, combating the boredom. Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies. Right now I am downloading three movies onto my computer for tomorrow. I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.
Thirdly, the nausea. Although I have never actually been sick I have still felt nauseated. I find a simple remedy for this is to keep snacking. The hospital supplies a never ending supply of cheese and crackers, so I am always eating them. I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.
Fourthly, the headache. Nasty headaches are a side effect of IVIG, and prevention is the best cure. IVIG pushes up your blood volume, which increases your blood pressure. Your body combats this by expelling water, causing dehydration. Blood pressure plus dehydration equals headache. To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.
Lastly, a couple of general pieces of advice. Get someone to drive you or catch a cab. There is a good chance you won't feel like driving home. Second, be nice to the nurses. They do a great job and do the best they can. If you are not nice to them they will not be nice back to you. If I feel up to it I willl let you know how it went tomorrow. Until then, stay well:)
Friday, July 22, 2011
Doctors
Doctors. Doctors are the most important medical professionals you will deal with. They are highly talented and highly knowledgeable people who we trust to figure out what is wrong with us and more importantly, how to fix us.
However, no matter how brilliant and amazing the are, they are still human, and capable of making mistakes, and susceptible to all the same frailties as the rest of us. Often doctors are guilty of arrogance or complacency. I have been a victim of both faults in the past.
So, when it comes to doctors, there are many questions that are raised:-
- How do I pick a doctor?
- How can I be sure of his treatment options?
- When should I change doctors?
- etc. etc.
This is a massive topic and I will cover as much as I can over the next few posts. Different types of doctor require different attributes too. But for now I will leave you with three important tips when it comes to all doctors.
- Don't be afraid of your doctor. All to often as patients we put doctors high up on a pedestal. They are not gods and should not be treated as such. They are paid handsomely for their service so don't be afraid to treat them as an equal.
- If in doubt get a second opinion. It's your body and your health. If you have any doubt, better to be doubly sure.
- Take charge of your own treatment. Doctors know diseases, you know you! Know yourself exactly what your problem is and what your treatment options are. You know what works best for you and you can discuss this with your doctor.
Next time I will talk about the person everything should start with. Your GP. Until then, stay well:)
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