Somehow I failed to set up notification so I didn't see that some people had actually been posting comments. I have no idea how I overlooked that!
Thank you for the comments about IDF. I've been hanging out at primaryimmune.org since I started treatment and we're hoping to attend their conference next year. I also started subscribing to IG Living Magazine, I quite liked the first issue that I received a couple of weeks ago. I hadn't heard the 5% number for people who have problems with IVIG, we hadn't come across that in the information we had found. We were pretty paranoid when we first started learning what I probably had and thought SCIG was the best way to go.
We're not entirely happy with my immunologist. He's perfectly competent, but his main line is allergies, not immunology. There's not a lot in this area in that line, and we're probably going to be looking at finding another. I'd like to go to Mayo, I'm just disappointed that they don't have any immunologists in Phoenix as that's where I'm from and where my parents are, so free lodging! I'm also checking in to a couple of research programs through NIH though we seem to be having some communications problems.
One of our points of unhappiness is the diagnosis. It's obvious that I have CVID, but we don't think he's done enough to try to determine the cause. I'm particularly not happy that he doesn't seem concerned at the IG subclass report that shows all four of my numbers to be below 25% of the normal range. We're a little concerned that I could have an IgA reaction and that Vivaglobin, and thus SCIG, might not be the product/treatment that I should be on.
We didn't know about IVIG home care when we started researching this stuff. My current immunologist prefers SCIG, which is what we started with. So that's a possibility, we might have to finish out the initial six month approval under SCIG, then we'll probably check in to IVIG at home.
So thanks for the comments, I'll try to be more diligent about responding to them.
Thursday, October 15, 2009
Saturday, October 10, 2009
Clearly I can't write a good narrative
But I tried. There's a lot of background information about my condition that needs to be conveyed, and that's mostly done.
So we'll jump back a couple of months to July. We finally got the Ig Panel run and it confirmed that my gamma globulin levels were so low that one of them was listed as <4, so I guess they couldn't detect any reasonable levels of it. The diagnosis was confirmed, and my immunologist began arranging treatment.
In late June/early July I had a meeting with my manager and the department director and told them what I had, what it meant, and that I might have to quit my job. At this point I had missed over 8 weeks of work, mostly without pay. Needless to say it hit my bank account pretty hard. They weren't happy at the prospect of losing me but were also very concerned for my health.
My mother-in-law passed away in June. She was cremated in Maine and would be interred next to her husband in Ohio. Because of the cremation, there was no rush to do anything, and it took time to get various people's schedules together, especially to accomodate a relative coming over from Scotland (my parents-in-law came from Scotland in the 50's, my wife is a first generation American).
The date for the service in Ohio was set for the first Saturday in August. I was healthy at that point, but we were very paranoid. To assuage the paranoia, we decided it was in my best interest that we drive: it seemed prudent to avoid being stuck in an enclosed space for three hours with who knows how many sick people and germs. It was also in my wife's best interest to give her some closure by driving the same route that she took from New Mexico to Ohio, she says "for the last time", but I'm sure we'll be back there occasionally.
About two weeks before the trip, I get a call from CSL Behring, a drug manufacturer who makes Vivaglobin, the blood product that my doctor had ordered for my treatment. The treatment is globulin replacement therapy: my body isn't producing gamma globulin, you have to have gamma globulin for your immune system to work well, so by adding gamma globulin you can get a somewhat functional immune system.
There's only two ways to do this: intravenous and subcutaneous. We did a lot of research when we were confident of what I had but before it had been formally diagnosed, and decided that the subcutaneous (AKA SCIG AKA SubQ) looked like the way to go. Intravenous IG (IVIG) can be done at home but is usually done at a cancer center as the process is just like receiving chemotherapy. We didn't want to do this for two big reasons. First, the risk of reaction is much higher: anaphylactic shock being one of the biggies. The second was that my wife spent a lot of time with her mother in a cancer ward and didn't want to repeat the experience with me, even though I would be receiving a blood product, not chemotherapy drugs. And I REALLY didn't want to spend 4-8 hours with an IV in my arm with the very real possibility of being wiped out for a day or two after.
SCIG is a fairly new process in the United States, it was approved by the FDA in '94 or so but had been used in other parts of the world prior to that. The beauty of SCIG is that it's a DIY proposition: you get shipped the supplies and do it yourself at home. A MUCH more attractive proposition!
There's a huge advantage to SCIG over IVIG known as peak/trough levels. When you get IVIG, immediately after the treatment, your blood serum globulin levels are really high and your immune system is as happy as a proverbial happy clam. This is good. However, you typically go 3-4 weeks between treatments, and your level can drop really low before your next treatment, leaving you vulnerable to infection. With SCIG, you infuse on a weekly basis: your highs aren't as high, but your lows are nowhere near as low, so you maintain a much more steady level on a weekly basis. And since all of the equipment will fit in to a box about the size of a fishing tackle box, you can travel with it whereas with IVIG you'd have to make arrangements with other cancer centers if you wanted to travel.
And my inability to properly maintain a narrative once again wanders off-track, but in my defense my sleep has been rather off the last couple of days. I really should outline what I'm going to write about.
Mid/late July: I've been diagnosed with hypogammaglobulinemia, or Common Variable Immune Deficiency (CVID). Treatment is pretty straightforward and is ordered, but treatment is also quite expensive, to the tune of around $9,000 a month if you don't have insurance. My doctor ordered treatment, and we're getting ever closer to our departure date for our trip. I get a call from CSL, and they go over what will be going on and send me all sorts of starter information, including a DVD showing what the process is. They tell me the name of the pharmacy that I'll be getting my supplies through, said pharmacy will also be conducting my initial training and will be my point of contact if I have any problems with the infusion process (more on that later). We get increasingly anxious as time passes by, finally the Friday before the trip I talk to my immunologist: the insurance company has put the treatment on hold pending a review.
And I'm going to pause here as I'm at a convention and want to get over to the events. But, as Douglas Adams so aptly pointed out, stress is a bad thing in our society, so as to somewhat alleviate this, I'll reveal in advance that ultimately my treatment is approved.
So we'll jump back a couple of months to July. We finally got the Ig Panel run and it confirmed that my gamma globulin levels were so low that one of them was listed as <4, so I guess they couldn't detect any reasonable levels of it. The diagnosis was confirmed, and my immunologist began arranging treatment.
In late June/early July I had a meeting with my manager and the department director and told them what I had, what it meant, and that I might have to quit my job. At this point I had missed over 8 weeks of work, mostly without pay. Needless to say it hit my bank account pretty hard. They weren't happy at the prospect of losing me but were also very concerned for my health.
My mother-in-law passed away in June. She was cremated in Maine and would be interred next to her husband in Ohio. Because of the cremation, there was no rush to do anything, and it took time to get various people's schedules together, especially to accomodate a relative coming over from Scotland (my parents-in-law came from Scotland in the 50's, my wife is a first generation American).
The date for the service in Ohio was set for the first Saturday in August. I was healthy at that point, but we were very paranoid. To assuage the paranoia, we decided it was in my best interest that we drive: it seemed prudent to avoid being stuck in an enclosed space for three hours with who knows how many sick people and germs. It was also in my wife's best interest to give her some closure by driving the same route that she took from New Mexico to Ohio, she says "for the last time", but I'm sure we'll be back there occasionally.
About two weeks before the trip, I get a call from CSL Behring, a drug manufacturer who makes Vivaglobin, the blood product that my doctor had ordered for my treatment. The treatment is globulin replacement therapy: my body isn't producing gamma globulin, you have to have gamma globulin for your immune system to work well, so by adding gamma globulin you can get a somewhat functional immune system.
There's only two ways to do this: intravenous and subcutaneous. We did a lot of research when we were confident of what I had but before it had been formally diagnosed, and decided that the subcutaneous (AKA SCIG AKA SubQ) looked like the way to go. Intravenous IG (IVIG) can be done at home but is usually done at a cancer center as the process is just like receiving chemotherapy. We didn't want to do this for two big reasons. First, the risk of reaction is much higher: anaphylactic shock being one of the biggies. The second was that my wife spent a lot of time with her mother in a cancer ward and didn't want to repeat the experience with me, even though I would be receiving a blood product, not chemotherapy drugs. And I REALLY didn't want to spend 4-8 hours with an IV in my arm with the very real possibility of being wiped out for a day or two after.
SCIG is a fairly new process in the United States, it was approved by the FDA in '94 or so but had been used in other parts of the world prior to that. The beauty of SCIG is that it's a DIY proposition: you get shipped the supplies and do it yourself at home. A MUCH more attractive proposition!
There's a huge advantage to SCIG over IVIG known as peak/trough levels. When you get IVIG, immediately after the treatment, your blood serum globulin levels are really high and your immune system is as happy as a proverbial happy clam. This is good. However, you typically go 3-4 weeks between treatments, and your level can drop really low before your next treatment, leaving you vulnerable to infection. With SCIG, you infuse on a weekly basis: your highs aren't as high, but your lows are nowhere near as low, so you maintain a much more steady level on a weekly basis. And since all of the equipment will fit in to a box about the size of a fishing tackle box, you can travel with it whereas with IVIG you'd have to make arrangements with other cancer centers if you wanted to travel.
And my inability to properly maintain a narrative once again wanders off-track, but in my defense my sleep has been rather off the last couple of days. I really should outline what I'm going to write about.
Mid/late July: I've been diagnosed with hypogammaglobulinemia, or Common Variable Immune Deficiency (CVID). Treatment is pretty straightforward and is ordered, but treatment is also quite expensive, to the tune of around $9,000 a month if you don't have insurance. My doctor ordered treatment, and we're getting ever closer to our departure date for our trip. I get a call from CSL, and they go over what will be going on and send me all sorts of starter information, including a DVD showing what the process is. They tell me the name of the pharmacy that I'll be getting my supplies through, said pharmacy will also be conducting my initial training and will be my point of contact if I have any problems with the infusion process (more on that later). We get increasingly anxious as time passes by, finally the Friday before the trip I talk to my immunologist: the insurance company has put the treatment on hold pending a review.
And I'm going to pause here as I'm at a convention and want to get over to the events. But, as Douglas Adams so aptly pointed out, stress is a bad thing in our society, so as to somewhat alleviate this, I'll reveal in advance that ultimately my treatment is approved.
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