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.
Wednesday, July 6, 2011
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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