Sorry I haven't posted much lately. I've been working on something that's kind of important to me and if you've been following and enjoy my blog you will be excited about it too! But I'm not going to say anything other than what I've already said here until I get everything all worked out!
I hope you all stick with me and can be patient for a bit!
Have a happy holiday season and take things easy!
Showing posts with label Vaculitis. Show all posts
Showing posts with label Vaculitis. Show all posts
Tuesday, November 3, 2015
Thursday, June 18, 2015
Surgery Over
So I had my sinuses roto rootered yesterday. Hopefully this will lead to better breathing in the future. It was kind of funny because the surgeon was running ahead of schedule, how often does that happen (?), so he was trying to rush the nurses through putting the IV's and stuff in and he finally just got fed up and came to collect me and take me down to surgery himself because he couldn't stand to wait for the orderlies to do it. The whole trip to the surgical suite other nurses would give him a hard time since he used to be an orderly at that hospital before he became a surgeon.
I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.
Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!
I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.
Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!
Wednesday, December 3, 2014
Yoga vs Me
Oh man, I made the mistake of going to a yoga class with my mother last night. Cue me sleeping in to 1:00pm today and waking up so stiff and painful that I can hardly move. Arthritis and yoga do not mix. I snap, crackled, and popped through as many of the poses as I could but downward dog is just not my friend. Not to mention lung and connective tissue problems makes it really hard to breath during said stretches. Let's not even start on attempting to balance.
It was an experience for sure.
Next time, I will bring a chair so that I can modify the poses to be easier for me to handle.
If you would like to try it, here is a link to a lady who specializes in yoga for arthritis and she has instructional videos on youtube!
https://www.youtube.com/user/KimMcNeilYoga
PS sorry for the sporadic updates.
Monday, August 19, 2013
Medical Science
I'm pretty frustrated with the state of medical science in relation to Vasculitis. There is a girl out there, fighting for her life right now in an ICU because her doctors did not know enough about the protocol for treating Vasculitis that they put her in a coma.
Imuran wasn't working so they switched her to methotrexate which she was only on for 6 weeks before they decided to take her off and give her Mercaptopurine. This form of chemo is not even approved for treatment of Vasculitis, unlike Rituxan which is the most obvious choice and the current go to drug for ANCA assoiciated Vasculitis.
Now, the big warning on Mercaptopurine is this
"Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy." (http://www.drugs.com/pro/mercaptopurine.html)
Because they didn't even apparently know about Rituxan I am pretty sure that her doctors were not knowledgeable about any form of chemotherapy.
This is why education and awareness is so important.
Imuran wasn't working so they switched her to methotrexate which she was only on for 6 weeks before they decided to take her off and give her Mercaptopurine. This form of chemo is not even approved for treatment of Vasculitis, unlike Rituxan which is the most obvious choice and the current go to drug for ANCA assoiciated Vasculitis.
Now, the big warning on Mercaptopurine is this
"Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy." (http://www.drugs.com/pro/mercaptopurine.html)
Because they didn't even apparently know about Rituxan I am pretty sure that her doctors were not knowledgeable about any form of chemotherapy.
This is why education and awareness is so important.
Sunday, January 29, 2012
Cleaning up the dictionary
There are a few words in Vasculitis vocabulary that need to be removed completely or to have their definitions solidified within the community so that everyone knows what everyone else is talking about. Patients need to be able to understand what a doctor means when they say a certain thing and doctors need to decide what language they are going to use when it comes to describing aspects of these diseases to each other.
One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.
Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.
Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".
I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.
Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.
It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.
One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.
Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.
Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".
I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.
Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.
It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.
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