We still have not heard about possibly being on disability. We DID have an appointment today regarding our (nonexistant) income that left us reeling. We're in trouble. BIG trouble.
Decisions have to be made. I'm trying to stop my panicking and just concentrate on getting through Christmas with my sanity intact.
The house is quiet tonight. Lately Brian goes to bed at about 8:00 - 9:00pm. He wakes up STILL tired the next morning. It doesn't make sense. His hemoglobin is at an all-time high. Tonight he put Koby to bed in our bed (with a steamer, in an attempt to have Koby sleep through the night without a hacking cough that's been pestering him for a week now!) Brian fell asleep. He woke up just a bit ago, started to do dishes, and declared it bedtime again.
I'm still trying to pull together a few Christmas events despite the illness going on at our house. Friends came over and decorated cookies today, and tomorrow some more friends are coming to do the same. We look forward to visiting. We look forward to a bit of laughter and joy. And I REALLY look forward to having my mind on something else for a few short hours.
Wednesday, December 21, 2011
Monday, December 12, 2011
I feel like I have very little to say so I don't post. Life continues to be a struggle for us in more ways than one. Brian has been really sick lately and very rarely has "good days", which makes it hard on all of us. I've been spending way too much time out of the house trying to bury myself in other things but it's burning me out much too quickly. I haven't had enough work, and I hope to change that in the new year. But right now I just need to figure out how to handle all of this!
Brian's numbers have been excellent, so he should be better. Right? But with the daily nausea, migraine-like headaches (also almost a daily thing), fatigue, weakness, dizziness, (etc, etc)... he is unable to function in a work environment. Probably not even a desk job, which is what we thought he might have to resort to. So for Christmas we are waiting on the news from the government as to whether or not he is "disabled", in their standards.
Apart from all of that, I have been learning to deal with my new role as breadwinner. I never saw myself being the one going out and "bringing home the bacon". Can I admit that it freaks me out? The only thing I know how to do, since being a stay at home mom, is clean and cook. I don't feel like I know anything else. I think I need some training somewhere, but I don't know what direction to go. And I still feel like I'm needed at home (if Brian has a day where he's too sick to care for kids, do I just put a movie on for them to babysit them and leave them? What if almost EVERY day ends up being a sick day - which has been the case lately?) I'm trying to keep things as normal as possible for my kids, and I'm failing miserably. Actually, I'm failing miserably at everything right now. With so many balls in the air, how can I not?
Well, this is sounding much more depressing than I thought it would! Which is why I've stayed away from posting! Sorry about that!
Brian's numbers have been excellent, so he should be better. Right? But with the daily nausea, migraine-like headaches (also almost a daily thing), fatigue, weakness, dizziness, (etc, etc)... he is unable to function in a work environment. Probably not even a desk job, which is what we thought he might have to resort to. So for Christmas we are waiting on the news from the government as to whether or not he is "disabled", in their standards.
Apart from all of that, I have been learning to deal with my new role as breadwinner. I never saw myself being the one going out and "bringing home the bacon". Can I admit that it freaks me out? The only thing I know how to do, since being a stay at home mom, is clean and cook. I don't feel like I know anything else. I think I need some training somewhere, but I don't know what direction to go. And I still feel like I'm needed at home (if Brian has a day where he's too sick to care for kids, do I just put a movie on for them to babysit them and leave them? What if almost EVERY day ends up being a sick day - which has been the case lately?) I'm trying to keep things as normal as possible for my kids, and I'm failing miserably. Actually, I'm failing miserably at everything right now. With so many balls in the air, how can I not?
Well, this is sounding much more depressing than I thought it would! Which is why I've stayed away from posting! Sorry about that!
Monday, September 19, 2011
Anxious
I could go on and on and on about all the things spinning around in my head, but do any of you really want to read it? And could my fingers even keep up?! Nope, probably not... Brian just came back from his PLEX/Soliris treatment. The doctors decided to do a PLEX even though his numbers were still stable. And they are thinking it might be his LAST PLEX!! Amazing. We'll see what happens when he goes back to the hospital in two weeks. We're hoping the numbers stay stable.
Well, I'm going to go sip a cup of tea and see if I can stop my brain from going into overload. I am physically exhausted from all that's going on in my head. Sitting on the couch and watching some TV sounds like a really good plan...
Tuesday, August 16, 2011
Yay Soliris!
Brian started Soliris last Monday. To date he's had two doses. We hold high hopes that this drug will be the answer, and so far it is working well! I have to remind my blog readers, though, that this drug is not a CURE, it is a lifelong treatment. His numbers yesterday were as follows (I'll put yesterdays numbers first, and the approximate number's he's had this year in brackets just to put it in perspective!)
Platelets: 211 (anywhere from 60-180 during non blitz weeks)
Creatinine: 126 (it's been as low as 130, and as high as 160. Lower is better. Normal, for Brian, is 120ish)
Hemoglobin: 113 (It's been stuck in the 90-100 range, normal is 135+)
So... I'm trying not to get my hopes up. But this is looking good! He actually has color in his cheeks for the first time in ages, and he is no longer dealing with constant nausea and fatigue. I've even seen him chase his kids around the playground without getting winded. I don't remember the last time I saw that! It's very encouraging.
Platelets: 211 (anywhere from 60-180 during non blitz weeks)
Creatinine: 126 (it's been as low as 130, and as high as 160. Lower is better. Normal, for Brian, is 120ish)
Hemoglobin: 113 (It's been stuck in the 90-100 range, normal is 135+)
So... I'm trying not to get my hopes up. But this is looking good! He actually has color in his cheeks for the first time in ages, and he is no longer dealing with constant nausea and fatigue. I've even seen him chase his kids around the playground without getting winded. I don't remember the last time I saw that! It's very encouraging.
Tuesday, July 26, 2011
Big News
I've been looking into clinical trials for Soliris worldwide, and hadn't come up with anything quite yet. I wanted to be armed with information and then present it to Brian's team of doctors and start to "fight" for him to get the drug. At least to try it out!
So imagine my surprise when Brian phoned me from the hospital yesterday to tell me that his favorite Hemotologist told him he was going to start on Soliris in the very near future! With the complications Brian's been having at PLEX treatments (allergic reactions to human plasma, lack of a good response to synthetic plasma, numbers being very low despite blitz treatments, etc) the doctors have been running out of options. And Brian, I would think, would be a good candidate for a "trial run" of Soliris based on the fact that his kidneys are still functioning at 80%. In terms of aHUS, 80% kidney function is huge! Most often, the disease isn't caught until kidney function is almost at zero.
They hope to start treatment at the end of August. In the meantime they have to get a few things sorted out. For starters, they have to get IN WRITING that the drug company has agreed to put Brian on Soliris. So far it's only been a verbal agreement. Today Brian is getting the meningitis vaccination that is required for treatment. Soliris lowers resistance to infection, especially meningitis.
Brian has only been approved for three months of Soliris, being that it is such an expensive drug. When the three months are up, they expect the disease to return. Soliris is not a cure, it is a treatment option. But while he is on Soliris, here's what he can expect: Normal platelet count, without PLEX treatments. Lowered blood pressure, without medication. A return to normal hemoglobin, and creatinine levels. Woohoo!
Life will look VERY different for those three months. And at the end of those three months, his doctors can always re-apply, especially if Brian does really well! A few other things are going to have to change while Brian is being treated. Being that he is prone to infections, we will have to stay VERY far away from sickness
So imagine my surprise when Brian phoned me from the hospital yesterday to tell me that his favorite Hemotologist told him he was going to start on Soliris in the very near future! With the complications Brian's been having at PLEX treatments (allergic reactions to human plasma, lack of a good response to synthetic plasma, numbers being very low despite blitz treatments, etc) the doctors have been running out of options. And Brian, I would think, would be a good candidate for a "trial run" of Soliris based on the fact that his kidneys are still functioning at 80%. In terms of aHUS, 80% kidney function is huge! Most often, the disease isn't caught until kidney function is almost at zero.
They hope to start treatment at the end of August. In the meantime they have to get a few things sorted out. For starters, they have to get IN WRITING that the drug company has agreed to put Brian on Soliris. So far it's only been a verbal agreement. Today Brian is getting the meningitis vaccination that is required for treatment. Soliris lowers resistance to infection, especially meningitis.
Brian has only been approved for three months of Soliris, being that it is such an expensive drug. When the three months are up, they expect the disease to return. Soliris is not a cure, it is a treatment option. But while he is on Soliris, here's what he can expect: Normal platelet count, without PLEX treatments. Lowered blood pressure, without medication. A return to normal hemoglobin, and creatinine levels. Woohoo!
Life will look VERY different for those three months. And at the end of those three months, his doctors can always re-apply, especially if Brian does really well! A few other things are going to have to change while Brian is being treated. Being that he is prone to infections, we will have to stay VERY far away from sickness
Saturday, July 23, 2011
A Year Ago
A year ago today I was walking around a really fun fair with my two kids, my good friend and her two kids. We'd just entered the fair grounds and were looking around at all the displays near the entrance.
A year ago today I got a phone call on my cell phone. Brian was in the hospital in Langley because he was having what I thought would be short lived issues with his blood pressure and kidneys. On the phone he told me that they were going to put him in an ambulance and rush him - "code blue" - to VGH where he would require emergency medical attention. He told me that they'd just discovered that his platelet count was dangerously low.
A year ago today I was trying to figure out how not to crumple to my knees in a public park and start sobbing in front of my children. I was trying to keep my voice calm and I was wondering if keeping their Daddy's hospital stay a secret. I was thankful when my friend almost read my mind and distracted my kids by pointing out the newly hatched chicks nearby.
A year ago today I didn't know if I'd ever see my husband again. I knew how serious it was, and I could hear my doctor's words echoing in my head. "If you don't go to the hospital right now, you'll likely die within 24 hours" I wandered around the fair grounds for awhile just letting it sink in, not knowing if I was becoming a widow while Brian was riding in an ambulance, alone. I didn't have any family available to me that day, so I had no where to drop my kids off. I had a long drive into VGH and I didn't know what I'd find when I got there.
A year ago today I knew nothing about platelet counts, or plasma treatments, or the link between blood pressure and kidney function. I'd never heard of hemolytic uremic syndrome and I didn't know anything about rare blood diseases.
A year ago today my entire world changed...
A year ago today I got a phone call on my cell phone. Brian was in the hospital in Langley because he was having what I thought would be short lived issues with his blood pressure and kidneys. On the phone he told me that they were going to put him in an ambulance and rush him - "code blue" - to VGH where he would require emergency medical attention. He told me that they'd just discovered that his platelet count was dangerously low.
A year ago today I was trying to figure out how not to crumple to my knees in a public park and start sobbing in front of my children. I was trying to keep my voice calm and I was wondering if keeping their Daddy's hospital stay a secret. I was thankful when my friend almost read my mind and distracted my kids by pointing out the newly hatched chicks nearby.
A year ago today I didn't know if I'd ever see my husband again. I knew how serious it was, and I could hear my doctor's words echoing in my head. "If you don't go to the hospital right now, you'll likely die within 24 hours" I wandered around the fair grounds for awhile just letting it sink in, not knowing if I was becoming a widow while Brian was riding in an ambulance, alone. I didn't have any family available to me that day, so I had no where to drop my kids off. I had a long drive into VGH and I didn't know what I'd find when I got there.
A year ago today I knew nothing about platelet counts, or plasma treatments, or the link between blood pressure and kidney function. I'd never heard of hemolytic uremic syndrome and I didn't know anything about rare blood diseases.
A year ago today my entire world changed...
Wednesday, July 20, 2011
An Update
On Monday I went with Brian to the hospital to get some answers to the questions that plague my mind. In the last few weeks I've done more and more research (Have I mentioned that I'm a research buff?) into his condition and I'm not finding much in the way of help. But I HAVE found out a few interesting things (at the hospital, and before I even went)
- Brian's diagnosis is now an even longer title. Familial atypical hemolytic uremic syndrome. If you look it up, you won't find it. The most important part is the "atypical hemolytic uremic syndrome" part. The rest of it just signifies what TYPE of atypical HUS he has. Familial is in the title because his disease is hereditary, and it can either be a recessive or a dominant gene passed down. Recessive ALWAYS shows up in infancy or childhood, which naturally means that Brian's case is dominant.
- There has been a treatment plan introduced for such a rare case of HUS. It's been tried on a few patients with outstanding results. It's a drug called "Soliris". You may have heard the name before. Apparently it recently made the Forbes list of the most expensive drugs in the world. And, you guessed it, Soliris topped the list. It can only treat two different kinds of blood disorders so, naturally, it is not a widely used drug. That means the drug company can charge whatever they want for it. And they charge $20,000 per unit. If Brian were to receive this treatment, he would start off having a few units of Soliris a day until the doctors start to see results. In one week, Brian's treatment could easily top a million! And, um... yeah. We don't have that kind of money.
- Soliris was approved for use in the US in 2009. That means there could possibly be clinical trials elsewhere in the world. Maybe even Canada. We have to find out where clinical trials could be taking place and see if we can get Brian on "the list".
- The doctor I spoke with at the hospital said that, from his standpoint, the disease is "managed". He didn't say it was managed WELL, he just said he was satisfied with where numbers are. This was explained to me as a response to my concerned questions about Brian's well-being here at home. There has been a noticeable decline in his health. Last week was hard. He spent so much time either being nauseated to the point that it affected his daily life, or throwing up. He is fatigued much of the time and I am so glad he doesn't have to go to work every morning right now. He is losing weight, pale, and generally feels unwell the majority of the time. I tried explaining that to his doctor, but he said the only concern the hematology team has with Brians numbers is his consistently high blood pressure. He's on a handful of drugs to try to bring his blood pressure down, but they don't seem to be doing their job. Next on my "research agenda": finding some way to lower his blood pressure!!
Well, this is just a snippet of information I've received recently and I'm overwhelmed just typing it out! More to come as I continue searching out answers!
- Brian's diagnosis is now an even longer title. Familial atypical hemolytic uremic syndrome. If you look it up, you won't find it. The most important part is the "atypical hemolytic uremic syndrome" part. The rest of it just signifies what TYPE of atypical HUS he has. Familial is in the title because his disease is hereditary, and it can either be a recessive or a dominant gene passed down. Recessive ALWAYS shows up in infancy or childhood, which naturally means that Brian's case is dominant.
- There has been a treatment plan introduced for such a rare case of HUS. It's been tried on a few patients with outstanding results. It's a drug called "Soliris". You may have heard the name before. Apparently it recently made the Forbes list of the most expensive drugs in the world. And, you guessed it, Soliris topped the list. It can only treat two different kinds of blood disorders so, naturally, it is not a widely used drug. That means the drug company can charge whatever they want for it. And they charge $20,000 per unit. If Brian were to receive this treatment, he would start off having a few units of Soliris a day until the doctors start to see results. In one week, Brian's treatment could easily top a million! And, um... yeah. We don't have that kind of money.
- Soliris was approved for use in the US in 2009. That means there could possibly be clinical trials elsewhere in the world. Maybe even Canada. We have to find out where clinical trials could be taking place and see if we can get Brian on "the list".
- The doctor I spoke with at the hospital said that, from his standpoint, the disease is "managed". He didn't say it was managed WELL, he just said he was satisfied with where numbers are. This was explained to me as a response to my concerned questions about Brian's well-being here at home. There has been a noticeable decline in his health. Last week was hard. He spent so much time either being nauseated to the point that it affected his daily life, or throwing up. He is fatigued much of the time and I am so glad he doesn't have to go to work every morning right now. He is losing weight, pale, and generally feels unwell the majority of the time. I tried explaining that to his doctor, but he said the only concern the hematology team has with Brians numbers is his consistently high blood pressure. He's on a handful of drugs to try to bring his blood pressure down, but they don't seem to be doing their job. Next on my "research agenda": finding some way to lower his blood pressure!!
Well, this is just a snippet of information I've received recently and I'm overwhelmed just typing it out! More to come as I continue searching out answers!
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