The irony of the title for this post is rather pointed, as it has been over half a year since the last time I posted. A lot has happened, both good and bad. In the interest of upholding the purpose of this blog –which is to educate those who want to understand what it is like to live with CVID, and share experiences with those who may have a similar diagnosis – I shall do my best to share the most relevant events and insights from the past 9 months. Unfortunately, there is no ordained way to organize said experiences so I shall do the best I can to present things under the large umbrella of time management.
One of the most important things I have learned over the past year is the value of a good nurse. Of course it's nice to get along with your nurse on a personal level, but its crucial that they are excellent at sticking you with an IV needle as quick and painlessly as possible because (in my opinion) that is the worst part of the treatment. I have found that nurses who have experience working in an ER are excellent at this. They can chat you up and have the needle in before you have even finished tensing up in preparation. Speaking as someone who has had a nurse in the past that was not proficient at putting in needles, you want the best! An experienced nurse, an electric pump, a wonderful helper (my sister and my nurse have a routine down) and enough experience with the medical supplies your pharmacy sends you, and you can reduce the time your treatment takes from 5 hours to between 2-2.5 hours.
Having spent the past year adjusting to graduate school and my diagnosis at the same time, I can definitely say that time management is an issue. I found it helpful to inform my professors of my health condition and what it entails, so that if I had to miss a class because I wasn't feeling well or I had a doctor's appointment I couldn't schedule any other time, they would understand. The same would apply to a boss or manager. You can be glossy on the details, but making sure the "higher ups" know the basics of your health problem can make your life easier should something come up.
Speaking of doctor's appointments, in the first year or so after being diagnosed with CVID a lot of time is spent in doctor's offices seeing various specialists and your primary care provider in the interest of tracking down loose ends in terms of potential health complications. Remember, having CVID or any other kind of primary immunodeficiency means that you could have a wide variety of seemingly unrelated health problems. For me, problems included eczema, eye infections, impaired lung function, swollen lymph nodes, and the potential risk of lymphoma and lung disease. Making the most of available time is important. I learned to bring reading to do on the way to the office and while sitting in the waiting room.
Learn to say no. Not just to other people but also to yourself. I made the mistake of taking more classes than necessary my first quarter of graduate school. Having a major health problem not only takes up time for appointments, treatments, and insurance matters, but it also takes up a lot of energy. Keeping commitments to a minimum is not always easy, but it is helpful.
Stay organized. Keeping track of all of your medical files, phone calls with doctor's offices, pharmacies, and insurance offices about everything relating to your health makes getting to the bottom of inevitable difficulties faster and easier. I do my best to keep a log of phone conversations so I know what I said to whom and when.
Sleep is your best friend. The words "Graduate student" generally summons up images of late nights, huge piles of books, gallons of coffee and a lack of sleep while researching and writing the (hopefully) brilliant paper. This does not work. I'm going to hazard a guess that this doesn't work in general, but for someone like me this does not work at all. I tried it once, only since I tend to think better in the morning I tried to wake up earlier and earlier to get work done. Instead I got less and less productive and more and more tired until I started to get sick and had to take a day off.
This brings me to the final point for this post. Every now and then you just need to drop everything and take care of yourself. Whether that means spending a day sleeping, drinking tea, and taking various mediations because you're starting to get sick, or spending an evening eating chocolate and watching sad movies because you're frustrated with your diagnosis or were just told you need a surgery to check for cancer. Do not feel guilty. Do not stress about what is not getting done and what you still have left to do. Time may be precious, and having a major health problem may feel like a part-time job, but for your mental and physical health, taking time off from everything once in a while may be the best thing you can do.
Monday, July 9, 2012
Friday, September 23, 2011
The Necessity of Being a Fighter
Perhaps a better word would be a self-advocate. However, since in my personal experience I feel that I am constantly battling with someone in order to make sure that I am getting the care I need in order to preserve my health, I prefer the term fighter.
I have had the great misfortune of having to gain approval for my treatment and set up at-home infusion from two different health insurances in the same year. My first experience, while I was still under my parents health insurance, was a disastrous nightmare. Nobody knew what was going, and nobody told me what they did know. I found myself in the rather frustrating position of having to manage and advocate for my care, while not knowing what that entailed, as no one would tell me. Thus I called multiple different people, multiple times, until finally a month later I was able to get my treatment near the end of May.
Fast forward to this fall. I have had the great fortune to be accepted to a Ph.D. program at a highly respected research University that also offers excellent health insurance to its graduate students. I was told my pre-existing condition would be covered completely. In an attempt to avoid the disaster that was my first experience dealing with a health insurance about my treatment, I began making phone calls almost 3 months before school began. I was told nothing could be done until I was officially on the health insurance September 1st, including finding a new immunologist.
September 2nd I was in the health service center getting a referral to see an immunologist. I also went in person to the health insurance office to begin the process of getting my treatment approved. It is then that I learned that I am not "officially" on the health insurance until I register for classes. However, I couldn't register for classes until September 16th. Needless to say I was frustrated. But I was assured that my file had been flagged and as soon as I was registered I would be assigned a case manager and everything would move quickly. Fast forward to September 16th. I'm sure by now you might be able to guess what happened (Hint: If you thought that everything progressed smoothly and that I was all approved for home infusions, you have not had enough experience with health insurances). I was told I was not activated in the system yet, but I would be monday and my file had been flagged as high priority and as soon as I was activated they would get me a case manager and everything would be set up.
As I write, it is a Friday evening, all offices are closed until Monday, I need a treatment Tuesday, and I have heard nothing. Throughout the week I called my doctor's office to remind them to give my contact information to the home infusion company. Then I had to call the home infusion company to make sure that all the paperwork was completed on their end. I spent over half an hour in the Health Insurance office making sure that there would be no difficulties getting everything approved ("Oh no, it will get approved right away" they say) and that I will hear from my mysterious case manager tomorrow ("I have sent him emails flagged high priority. He will call you, and if he does not I will call you. Either way, you WILL hear from someone, I guarantee it"). In spite of multiple guarantees and assurances the day goes by without a word, and I find myself again making calls and leaving messages wondering why I still have not heard anything. At this point I do not know that I will get my treatment on time, in spite of my attempts to set everything up months ahead of time. Regardless, it will most likely affect my schoolwork, something I have been working so hard to avoid.
What is the point of this post (Besides being a forum in which I can vent my frustrations)? Heaven forbid whoever is reading this has a serious health issue. But if you do, be prepared to fight for your health because if you do not, no one else will. Call, inquire, leave messages, bother the necessary people everyday. Learn what kind of process needs to be completed and who is involved in the completion of that process, and then follow-up every day if necessary. You need to be the advocate for your health care, and you need to be prepared to step into the boxing ring and face off with the big bad health insurance. And remember that when nothing is working out and you are frustrated out of your mind, some blessed soul invented ice cream.
Speaking of which, I should go finish this bowl before it melts.
I have had the great misfortune of having to gain approval for my treatment and set up at-home infusion from two different health insurances in the same year. My first experience, while I was still under my parents health insurance, was a disastrous nightmare. Nobody knew what was going, and nobody told me what they did know. I found myself in the rather frustrating position of having to manage and advocate for my care, while not knowing what that entailed, as no one would tell me. Thus I called multiple different people, multiple times, until finally a month later I was able to get my treatment near the end of May.
Fast forward to this fall. I have had the great fortune to be accepted to a Ph.D. program at a highly respected research University that also offers excellent health insurance to its graduate students. I was told my pre-existing condition would be covered completely. In an attempt to avoid the disaster that was my first experience dealing with a health insurance about my treatment, I began making phone calls almost 3 months before school began. I was told nothing could be done until I was officially on the health insurance September 1st, including finding a new immunologist.
September 2nd I was in the health service center getting a referral to see an immunologist. I also went in person to the health insurance office to begin the process of getting my treatment approved. It is then that I learned that I am not "officially" on the health insurance until I register for classes. However, I couldn't register for classes until September 16th. Needless to say I was frustrated. But I was assured that my file had been flagged and as soon as I was registered I would be assigned a case manager and everything would move quickly. Fast forward to September 16th. I'm sure by now you might be able to guess what happened (Hint: If you thought that everything progressed smoothly and that I was all approved for home infusions, you have not had enough experience with health insurances). I was told I was not activated in the system yet, but I would be monday and my file had been flagged as high priority and as soon as I was activated they would get me a case manager and everything would be set up.
As I write, it is a Friday evening, all offices are closed until Monday, I need a treatment Tuesday, and I have heard nothing. Throughout the week I called my doctor's office to remind them to give my contact information to the home infusion company. Then I had to call the home infusion company to make sure that all the paperwork was completed on their end. I spent over half an hour in the Health Insurance office making sure that there would be no difficulties getting everything approved ("Oh no, it will get approved right away" they say) and that I will hear from my mysterious case manager tomorrow ("I have sent him emails flagged high priority. He will call you, and if he does not I will call you. Either way, you WILL hear from someone, I guarantee it"). In spite of multiple guarantees and assurances the day goes by without a word, and I find myself again making calls and leaving messages wondering why I still have not heard anything. At this point I do not know that I will get my treatment on time, in spite of my attempts to set everything up months ahead of time. Regardless, it will most likely affect my schoolwork, something I have been working so hard to avoid.
What is the point of this post (Besides being a forum in which I can vent my frustrations)? Heaven forbid whoever is reading this has a serious health issue. But if you do, be prepared to fight for your health because if you do not, no one else will. Call, inquire, leave messages, bother the necessary people everyday. Learn what kind of process needs to be completed and who is involved in the completion of that process, and then follow-up every day if necessary. You need to be the advocate for your health care, and you need to be prepared to step into the boxing ring and face off with the big bad health insurance. And remember that when nothing is working out and you are frustrated out of your mind, some blessed soul invented ice cream.
Speaking of which, I should go finish this bowl before it melts.
Sunday, August 7, 2011
The Trouble With Bruises
I'd like to think that over the course of this summer I have started to become more accustomed to living with CVID. Too bad that's not actually true. Yes, I now know the drill as far as at home treatments go, and I'm getting better each day about using hand sanitizer obsessively. I think I have it all down until I actually have to get a treatment. Then I realize I am in no way adjusted. I am not accustomed to putting aside an entire day every month for a medical procedure. I am not accustomed to spending the day before abnormally exhausted and fatigued. I am not accustomed to needles, and blood, and hours spent sitting on a couch while medicine drips into my veins and a nurse checks my vital signs. Not only am I not accustomed to it, but I am annoyed by it. Deeply, hugely annoyed.
Which brings me to the main point of this post: Bruises. As anyone who has given blood, or has had an IV before knows, a rather nasty bruise tends to develop on the site where the needle is put in. In my case, this is always the inside of my left elbow, which is where the IV goes for my treatment. Such a nasty bruise is generally noticed by other people. Which then leads to the naturally inquiry and assumption "That's a nasty bruise. Did you give blood today?". A very innocent question, yet one that leaves me in a bit of a quandary. Do I tell them the truth? The truth is rather personal, and unfortunately human nature inclines us to look somewhat negatively on someone who has a permanent health problem. Pity, no matter how kindly meant, can be poisonous. I do not want your pity. And so my first instinct is not to tell someone that I have a health condition that requires me to get an IV treatment once a month. However, the truth is also educational. I myself had never thought about immunodeficiencies, what they mean or how they are treated before I was diagnosed. As someone who is now part of a small and mostly unknown community, should I not educate and advocate for myself and others like me? Should I not raise public awareness and concern about people living with an immunodeficiency in order to increase funding and interest in researching the causes so that someday there may be a cure? Perhaps I am being somewhat cowardly, hiding my condition, telling only a very select few of its existence and pretending to the rest of the world that I am normal. However, as mentioned above, I am still not accustomed to my new reality. In many ways it is still raw, it is still painful, and I am by nature a private person when it comes to the unpleasant parts of life. I haven't been able to decide yet just how open I want to be.
But that is the trouble with bruises. They are there for the world to see. They invite questions that, though well-meaning and innocent, force me to make decisions that I would rather avoid. My illness is invisible; the bruises left from my treatments are not.
Which brings me to the main point of this post: Bruises. As anyone who has given blood, or has had an IV before knows, a rather nasty bruise tends to develop on the site where the needle is put in. In my case, this is always the inside of my left elbow, which is where the IV goes for my treatment. Such a nasty bruise is generally noticed by other people. Which then leads to the naturally inquiry and assumption "That's a nasty bruise. Did you give blood today?". A very innocent question, yet one that leaves me in a bit of a quandary. Do I tell them the truth? The truth is rather personal, and unfortunately human nature inclines us to look somewhat negatively on someone who has a permanent health problem. Pity, no matter how kindly meant, can be poisonous. I do not want your pity. And so my first instinct is not to tell someone that I have a health condition that requires me to get an IV treatment once a month. However, the truth is also educational. I myself had never thought about immunodeficiencies, what they mean or how they are treated before I was diagnosed. As someone who is now part of a small and mostly unknown community, should I not educate and advocate for myself and others like me? Should I not raise public awareness and concern about people living with an immunodeficiency in order to increase funding and interest in researching the causes so that someday there may be a cure? Perhaps I am being somewhat cowardly, hiding my condition, telling only a very select few of its existence and pretending to the rest of the world that I am normal. However, as mentioned above, I am still not accustomed to my new reality. In many ways it is still raw, it is still painful, and I am by nature a private person when it comes to the unpleasant parts of life. I haven't been able to decide yet just how open I want to be.
But that is the trouble with bruises. They are there for the world to see. They invite questions that, though well-meaning and innocent, force me to make decisions that I would rather avoid. My illness is invisible; the bruises left from my treatments are not.
Wednesday, July 6, 2011
Random Thoughts and Reflections
Well, it is the last day before my next treatment. I've actually been doing pretty good until today, where no matter what I do I just feel exhausted. Still, its better than feeling exhausted for a week, so progress is being made.
Lately I've found myself struggling with this illness/deficiency/what-have-you when it comes to various life situations. Let me explain, or wax eloquent, or - the more accurate label - whine about said situations.
The first of these is the trouble and bother and confusion inherent in trying to change my health insurance and move to a completely different city while making sure that I will still be able to get treatments. I am very lucky in that the University I will be studying/working for has excellent health care coverage, so as far as I can tell I don't have to be too concerned about the very large expense associated with IVIG treatments. However, trying to obtain any information at all is akin to pulling teeth. Nobody knows what I am talking about. Nobody knows the answers to any question that I have and instead attempt to look up the answer without being able to give me anything definitive to hang my hat on besides "your pre-existing condition will be covered by the health insurance." Great. I knew that because I did the research before I called, but thank you for confirming that for me. But when it comes to setting up the treatment, getting the necessary referrals, filling out the paperwork, etc. no one is positive what I should do. And it would appear that they won't know if there is a home health care company that they are associated with until I fill out paperwork stating that I need the treatment and inquiring if I can receive the treatment at home. THEN they will know if they have a home health care company they are associated with. Rant #1 done.
Second and less frustrating situation: How and when do I inform future roommates about my condition? Especially if I am able to set up a home care situation. I'm sure its not a huge deal, but I could understand someone having second thoughts about having big boxes of medical supplies and syringes delivered to the apartment and then having a stranger show up for a couple hours to stick needles and infuse liquid medicine into their roommate. Awkward. Not to mention where are we going to keep the IV pole? Ok, that actually isn't a big problem since it is a collapsible pole. But really, what young adult moving into their first apartment wants to tell people visiting "Hi! You can put your coats in the closet over there, the one with the keyboard case and IV pole on the floor." Totally normal. Although I suppose it could also function as a coat hanger on wheels...
And last but not least, the interaction of my condition with my night-time social life. Also known as its-a-weekend-night-I-want-to-go-out-with-my-friends. I'm not a huge party-er or drinker, but every few weeks or so I want to go out and have a good time with my friends. However, I notice that there is a slight drop in my health for a couple days after I go out (unless I'm the DD). Does that mean I should just be the DD for life? I'm finding it hard to find the right balance between being able to go out with my friends and have fun but also not have it affect my health for days afterwards. I find it even more frustrating that I have to think about it at all. In many ways I envy my friends their carefree nights out. I know I will eventually find the right balance, but the process, and the limitations, are frustrating.
Lately I've found myself struggling with this illness/deficiency/what-have-you when it comes to various life situations. Let me explain, or wax eloquent, or - the more accurate label - whine about said situations.
The first of these is the trouble and bother and confusion inherent in trying to change my health insurance and move to a completely different city while making sure that I will still be able to get treatments. I am very lucky in that the University I will be studying/working for has excellent health care coverage, so as far as I can tell I don't have to be too concerned about the very large expense associated with IVIG treatments. However, trying to obtain any information at all is akin to pulling teeth. Nobody knows what I am talking about. Nobody knows the answers to any question that I have and instead attempt to look up the answer without being able to give me anything definitive to hang my hat on besides "your pre-existing condition will be covered by the health insurance." Great. I knew that because I did the research before I called, but thank you for confirming that for me. But when it comes to setting up the treatment, getting the necessary referrals, filling out the paperwork, etc. no one is positive what I should do. And it would appear that they won't know if there is a home health care company that they are associated with until I fill out paperwork stating that I need the treatment and inquiring if I can receive the treatment at home. THEN they will know if they have a home health care company they are associated with. Rant #1 done.
Second and less frustrating situation: How and when do I inform future roommates about my condition? Especially if I am able to set up a home care situation. I'm sure its not a huge deal, but I could understand someone having second thoughts about having big boxes of medical supplies and syringes delivered to the apartment and then having a stranger show up for a couple hours to stick needles and infuse liquid medicine into their roommate. Awkward. Not to mention where are we going to keep the IV pole? Ok, that actually isn't a big problem since it is a collapsible pole. But really, what young adult moving into their first apartment wants to tell people visiting "Hi! You can put your coats in the closet over there, the one with the keyboard case and IV pole on the floor." Totally normal. Although I suppose it could also function as a coat hanger on wheels...
And last but not least, the interaction of my condition with my night-time social life. Also known as its-a-weekend-night-I-want-to-go-out-with-my-friends. I'm not a huge party-er or drinker, but every few weeks or so I want to go out and have a good time with my friends. However, I notice that there is a slight drop in my health for a couple days after I go out (unless I'm the DD). Does that mean I should just be the DD for life? I'm finding it hard to find the right balance between being able to go out with my friends and have fun but also not have it affect my health for days afterwards. I find it even more frustrating that I have to think about it at all. In many ways I envy my friends their carefree nights out. I know I will eventually find the right balance, but the process, and the limitations, are frustrating.
Thursday, June 9, 2011
The Latest and Greatest Adventures...
This week was full of medical firsts. I had my first pulmonary examination to test my lung function. Although my immunologist didn't expect to find anything, he thought it would be a good idea to establish a baseline for future use, as CVID places me at a greater risk for lung diseases. I don't know what I was expecting in regards to the pulmonary testing, but I was most definitely NOT expecting a small glass box that I had to sit in. Thankfully the door to the box was only closed for one of the experiments. All of them involved breathing into a valve while wearing nose plugs, I just had to breathe in different ways. Strange experience, but rather short and painless.
Unfortunately, my first in-home IVIG treatment was neither of those things. I received my packages of goodies the night before my treatment. Since it was my first time working with this home health company, Coram, I received my very own mine-to-keep-forever IV pole and a pump that I was to return after some unknown amount of time. I also received a box with a gazillion different medical implements and drugs. There was an allergy kit with EpiPens and benedryl, hydro cortisone, the gammaglobulins which I had to refrigerate, and then a huge assortment of various tubings, needles, syringes, saline solutions, bags, alcohol wipes, and a bio-hazard box that I was to mail once it was full. Everything was in its own sterile sealed bag and all of it was completely overwhelming and confusing. I also received my own version of a health chart with large amounts of paperwork, and a rather useful Wellness tracker that is given out for free by the company that makes the brand of gammaglobulins that I use. If any one reading this also has an immunodeficiency, I highly recommend looking up Gamma gard and joining their GARDian program. Very helpful.
Anyway, on the big day my nurse came to my house in the morning and we got to work. There was an excessive amount of paperwork to go over and sign, and then we took inventory of the boxes to make sure she had everything she needed. What followed next was the not so fun part. Never before in my long history of IVs and blood work has anyone had so much trouble with getting the needle into a vein. She spent a good 8 minutes moving the needle around at the first site she tried before declaring that vein a lost cause. She cleaned up the first failed site and moved onto the second. Again, she spent several minutes trying to get the needle to connect with the vein, only this time I could feel the needle sliding off the outside of the vein, which felt like it was elastic. And that's when I began to get lightheaded and see black spots. Although she did get the needle in the vein, it wasn't a good IV because every time she tried to flush saline through the IV it hurt. By then I was not feeling well at all so I moved from a stool and tried to walk to my living room couch. Apparently I fainted on the way. Definitely a new experience as I've never fainted before. Luckily I was only out for a few seconds and the nurse and my mom caught me before I hit the floor. Once I was settled and ate some pretzels and drank water I was able to hum my way through enduring a THIRD attempt at getting the IV in, only this time on the other arm. Thankfully the third time was the charm. Of course, then the pump wouldn't work, and we had to spend 15 minutes experimenting with different tubing before giving up and settling for a good old fashioned gravity-drip IV. After that it was smooth sailing, and I actually felt relatively ok after the treatment was finished, instead of wanting to pass out like last time.
All in all the experience was a little bit more adventurous than I was aiming for. It makes me a bit nervous for next time, as I definitely do not want to repeat the fainting or the failed attempts to insert an IV. But here's to hoping that this round of IVIG will keep me feeling better and energetic for longer. Last time it took two and a half weeks before my energy levels began to drop once more.
Unfortunately, my first in-home IVIG treatment was neither of those things. I received my packages of goodies the night before my treatment. Since it was my first time working with this home health company, Coram, I received my very own mine-to-keep-forever IV pole and a pump that I was to return after some unknown amount of time. I also received a box with a gazillion different medical implements and drugs. There was an allergy kit with EpiPens and benedryl, hydro cortisone, the gammaglobulins which I had to refrigerate, and then a huge assortment of various tubings, needles, syringes, saline solutions, bags, alcohol wipes, and a bio-hazard box that I was to mail once it was full. Everything was in its own sterile sealed bag and all of it was completely overwhelming and confusing. I also received my own version of a health chart with large amounts of paperwork, and a rather useful Wellness tracker that is given out for free by the company that makes the brand of gammaglobulins that I use. If any one reading this also has an immunodeficiency, I highly recommend looking up Gamma gard and joining their GARDian program. Very helpful.
Anyway, on the big day my nurse came to my house in the morning and we got to work. There was an excessive amount of paperwork to go over and sign, and then we took inventory of the boxes to make sure she had everything she needed. What followed next was the not so fun part. Never before in my long history of IVs and blood work has anyone had so much trouble with getting the needle into a vein. She spent a good 8 minutes moving the needle around at the first site she tried before declaring that vein a lost cause. She cleaned up the first failed site and moved onto the second. Again, she spent several minutes trying to get the needle to connect with the vein, only this time I could feel the needle sliding off the outside of the vein, which felt like it was elastic. And that's when I began to get lightheaded and see black spots. Although she did get the needle in the vein, it wasn't a good IV because every time she tried to flush saline through the IV it hurt. By then I was not feeling well at all so I moved from a stool and tried to walk to my living room couch. Apparently I fainted on the way. Definitely a new experience as I've never fainted before. Luckily I was only out for a few seconds and the nurse and my mom caught me before I hit the floor. Once I was settled and ate some pretzels and drank water I was able to hum my way through enduring a THIRD attempt at getting the IV in, only this time on the other arm. Thankfully the third time was the charm. Of course, then the pump wouldn't work, and we had to spend 15 minutes experimenting with different tubing before giving up and settling for a good old fashioned gravity-drip IV. After that it was smooth sailing, and I actually felt relatively ok after the treatment was finished, instead of wanting to pass out like last time.
All in all the experience was a little bit more adventurous than I was aiming for. It makes me a bit nervous for next time, as I definitely do not want to repeat the fainting or the failed attempts to insert an IV. But here's to hoping that this round of IVIG will keep me feeling better and energetic for longer. Last time it took two and a half weeks before my energy levels began to drop once more.
Tuesday, May 17, 2011
Why antibiotics are not fun
Well the cold-like illness that I have been struggling with since February is finally starting to ease up. I'm coughing less often, and the coughs sound a lot less like a moderately successful attempt to bring up a lung. I'm also no longer going through a box of tissues a week. Best of all, my ears, which have been constantly plugged, are finally clearing up and I am no longer asking everyone to repeat themselves and watching TV with subtitles. All this is partially due, no doubt, to the IVIG treatment starting to have a gradual effect. It also doesn't hurt that I currently have nothing to do but sleep and relax until I start a summer job. However, I'm sure the antibiotics my primary doctor prescribed are also playing a large factor. Unfortunately.
As I understand it, one of the problems of having CVID is that when you get sick, you are sick for far longer than a normal person, and you often need a much stronger and prolonged course of treatment. Hence, my family physician prescribed a very strong and apparently rarely used antibiotic to help clear up my ears and sinuses. I am to take the antibiotics for two weeks, with option to refill for another two weeks if I don't feel like I'm better. However, since day 2 of being on the antibiotics ended with me incapacitated with indigestion, the worst headache of pain I ever remember experiencing, and vomiting which has left me weak and with a delicate stomach and a slightly less painful headache the day after, I feel disinclined to get a refill.
On the plus side, I actually managed to hear from my immunologist when I called one of his offices yesterday seeking more information, since I'm currently lost and adrift as to what the next step is. Turns out, as he is a very busy man, he had delegated a number of tasks to other doctors and staff. Thus, someone was supposed to have called me and talked to me about what the IVIG treatments meant, what I could expect, how to prepare, etc. so that I didn't go in uninformed. Apparently said person felt making the arrangements for the treatment was enough. I also learned that I am supposed to get the treatment every four weeks, and that I should have a follow up visit with my immunologist at the end of the month to see how my immunoglobulin levels are doing.
Now that I know the general lay of the land I feel a lot better. Which, I suppose, is part of the idea behind the phrase "knowledge is power".
As I understand it, one of the problems of having CVID is that when you get sick, you are sick for far longer than a normal person, and you often need a much stronger and prolonged course of treatment. Hence, my family physician prescribed a very strong and apparently rarely used antibiotic to help clear up my ears and sinuses. I am to take the antibiotics for two weeks, with option to refill for another two weeks if I don't feel like I'm better. However, since day 2 of being on the antibiotics ended with me incapacitated with indigestion, the worst headache of pain I ever remember experiencing, and vomiting which has left me weak and with a delicate stomach and a slightly less painful headache the day after, I feel disinclined to get a refill.
On the plus side, I actually managed to hear from my immunologist when I called one of his offices yesterday seeking more information, since I'm currently lost and adrift as to what the next step is. Turns out, as he is a very busy man, he had delegated a number of tasks to other doctors and staff. Thus, someone was supposed to have called me and talked to me about what the IVIG treatments meant, what I could expect, how to prepare, etc. so that I didn't go in uninformed. Apparently said person felt making the arrangements for the treatment was enough. I also learned that I am supposed to get the treatment every four weeks, and that I should have a follow up visit with my immunologist at the end of the month to see how my immunoglobulin levels are doing.
Now that I know the general lay of the land I feel a lot better. Which, I suppose, is part of the idea behind the phrase "knowledge is power".
Saturday, May 14, 2011
How it all began
I'm not a big blogging person. I'm big into the whole "my life is private, go away" scenario. I do believe in the therapeutic power of writing, which explains the numerous half-filled journals scattered around my life. However, as my dad pointed out to me, the point of blogging about this particular aspect of life is not as much therapeutic for myself as it is helpful for someone else. Either someone who wants to understand what I am going through, or what someone else they know with CVID is going through. Or, more personally important, someone like me who was diagnosed with this out of the blue and is feeling lost and confused and full of despair and questions because they're not sure what is going to happen, all they know is that their life has completely changed. So with that in mind, here goes nothing....
It's amazing how the big moments in life attain a pristine, crystal clear quality in one's mind, like they're trapped in a bubble and at anyone moment you can step inside and relive that moment. Its not true of course. Psychologists have long since shown that our memory is not perfect, and if anything we are guilty of invention, of adding details that did not originally exist, either for self-preservation or self-improvement. Still, it feels that way. I can distinctly remember the seconds before I was struck by a car while crossing the road when I was sixteen. Or when I got the call that offered me an exclusive spot in the Ph.D. program I had thought was now beyond my reach.
So it is that I can remember the call from my immunologist to inform me that he believed I had CVID. It was my first day of spring break, my last semester of undergraduate college. I remember that I was excited to finally get some answers. I had been sick on and off - more on than off - for over two years, and had been suffering more recently from a number of strange eye infections and painful lesions. I thought I had a Behcet's syndrome, a different rare immune system disease. Turns out I was wrong. I remember the feeling of fear when I learned that my immunoglobulin levels were over 400 counts lower than they should be. I remember the feeling of despair when I learned that there was no cure.
After the initial round of testing, which included vaccinations to see if I could produce antibodies in response (I can't) and blood tests to see if I have any antibodies to vaccinations I got when I was younger (I don't), I haven't really gotten any solid information. Most of what I know I learned from various websites, some of which are specifically for individuals with immunodeficiency, like this one. I'm frustrated that I haven't been able to sit down and talk with my immunologist about what it all means, though it has been two months since his first phone call. On the plus side, I have started the typical treatment for CVID, immunoglobulin replacement therapy, in which I receive immunoglobulins that have been distilled and purified from the blood of donors and infused intravenously to boost my crippled immune system. I am told that this treatment will help me feel better, more energetic, and will help me from getting sick so easily. Luckily I do not react strongly to the IVIG treatment, and the worse side effect I have experienced so far is fatigue.
I just wish I had some more answers.
It's amazing how the big moments in life attain a pristine, crystal clear quality in one's mind, like they're trapped in a bubble and at anyone moment you can step inside and relive that moment. Its not true of course. Psychologists have long since shown that our memory is not perfect, and if anything we are guilty of invention, of adding details that did not originally exist, either for self-preservation or self-improvement. Still, it feels that way. I can distinctly remember the seconds before I was struck by a car while crossing the road when I was sixteen. Or when I got the call that offered me an exclusive spot in the Ph.D. program I had thought was now beyond my reach.
So it is that I can remember the call from my immunologist to inform me that he believed I had CVID. It was my first day of spring break, my last semester of undergraduate college. I remember that I was excited to finally get some answers. I had been sick on and off - more on than off - for over two years, and had been suffering more recently from a number of strange eye infections and painful lesions. I thought I had a Behcet's syndrome, a different rare immune system disease. Turns out I was wrong. I remember the feeling of fear when I learned that my immunoglobulin levels were over 400 counts lower than they should be. I remember the feeling of despair when I learned that there was no cure.
After the initial round of testing, which included vaccinations to see if I could produce antibodies in response (I can't) and blood tests to see if I have any antibodies to vaccinations I got when I was younger (I don't), I haven't really gotten any solid information. Most of what I know I learned from various websites, some of which are specifically for individuals with immunodeficiency, like this one. I'm frustrated that I haven't been able to sit down and talk with my immunologist about what it all means, though it has been two months since his first phone call. On the plus side, I have started the typical treatment for CVID, immunoglobulin replacement therapy, in which I receive immunoglobulins that have been distilled and purified from the blood of donors and infused intravenously to boost my crippled immune system. I am told that this treatment will help me feel better, more energetic, and will help me from getting sick so easily. Luckily I do not react strongly to the IVIG treatment, and the worse side effect I have experienced so far is fatigue.
I just wish I had some more answers.
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