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I want to thank you all for taking the time to read this page, which I am writing for my lovely wife Amanda. This past year has been very difficult for our small family. We have seen our modest savings evaporate into unexpected home repairs and medical expenses, the loss of our beloved dog Asha to congestive heart failure, and two weeks ago I nearly lost my wife.
This past year has been a medical roller coaster. Amanda began to suffer a lot of seemingly unrelated symptoms including confusion and memory loss, joint pain, abdominal pain, anemia, and constant headaches. An MRI and CT were performed and found numerous small lesions on her brain. An appointment was scheduled with a neurologist but the soonest we could get in was over 4 months away. In the meantime her condition continued to deteriorate. She was eventually admitted to the ER when she began to see phantom shapes out of her peripheral vision. A special type of MRI, called an MRA, that looks at veins in the brain was performed, and an aneurysm was discovered. Due to its location it was determined that surgery should be performed to prevent a rupture. Fortunately, it would not be necessary to open her skull. Instead a catheter could be threaded from her leg into her head and the aneurysm sealed off.
A short time after this, one of her tests came back from the lab positive for lupus - a condition that in her case attacks the connective tissues between organs and it is now believed by her doctors to be responsible for a number of her symptoms. We have yet to get treatment for this condition. Misdiagnoses of this condition early on led to an unnecessary removal of her gall bladder, which turned out to be perfectly healthy.
We were told by the neurosurgeon that the aneurysm surgery was routine and very safe, with only a 1% chance of a rupture and a 3% chance of complication. Unfortunately, we were in that 3%. During surgery the aneurysm was punctured and blood leaked into her brain. The surgeon was almost immediately aware of the breach and was able to seal it off with a stent. But he could not determine how much blood had leaked through, nor could he assess her neurological condition until she was awake. I stayed the night in the hospital and around 2:30 a.m. I was woken to be told that she had had a "neurological event". What was eventually explained was that a clot had formed either in the stent or at the site of the aneurysm, had broken free and had against all odds managed to go down an extremely small vein into a very delicate part of the brain called the pons. There, it did some damage, and as a result she lost all motor control on the left side of her body. A stroke.
I will never find the words to capture how devastating this news was or that horrid empty feeling deep in my chest to see her lying there in that bed and know that there was nothing I could do to help her. She still had feeling in that left side. The doctors said it was a good sign but were reluctant to speculate how much function, if any, she would regain - or when.
I spent a lot of hours in the chapel that night, and every night thereafter. I didn't leave the hospital for four days. Over the next week she miraculously began to regain some of that control - first in her leg and later in her thumb. Her arm was the slowest to progress but now there is movement there too. She had surprised everyone.
Unfortunately, a day or two later her eyes stopped working properly, and she has had severe double vision. Neither eye can track to the left, and it hurts her to try. Used together the left eye will turn sharply to the inside. That has showed some improvement but it is unclear if it will ever resolve enough to use both eyes together. It may. We just don't know.
All that being said every estimate we have heard she has surpassed. She continues to gain strength and function, and throughout the entire experience she has never given in to despair. She is hopeful, and determined. It has been a two weeks now and for the first time yesterday I was able to watch my wife stand and walk. It was only a short distance, she was very weak, and she needed help - but she was walking.
As it has been explained to me it is possible, even probable, that she may never regain full function. But the doctors are very hopeful that she will be sufficiently functional and largely independent - in time.
During all of this life has been put on hold. The house sat empty. The food went bad. The bills remained unpaid. Now, I am having to turn my attention back to the practical matters of survival, and this includes the finances.
They project that Amanda will have to spend 4 -6 weeks in rehab. As she had not yet reached a full year with her employer she does not qualify for FMLA leave, and the non-FMLA leave will expire in about 2 weeks. At that point she will lose her job, and our household will lose 50% of its income for an unknown period of time. This will leave us about $800.00 short of making our bills each month. With the loss of her job she will also lose her insurance and we will have to go on COBRA to maintain coverage, which she absolutely must have. So in addition to being $800.00 short we will also have to come up with about another $800.00 to cover the COBRA. That’s around $1600.00 I have to pull out of thin air every 30 days...
I have not told her any of this yet. A huge part of her motivation to improve is the desire to return to work and resume her life. When I finally have to tell her this it will be very hard for her. Like me, she will be justifiably worried that we are going to lose our home, which we worked so hard for.
Truthfully, I don't know what to do. We have an amazing group of friends, family and co-workers. The support that we have received thus far has been incredible and deeply appreciated. On this site I have tried to set a goal based on the doctor’s estimate of her recovery time and our financial needs. I have to face the possibility that we may be at a reduced income for even as long as a year.
I was raised in such a way that it is very hard for me to accept help, and even harder to ask for it. But the truth is we need it, badly. I ask because I love her. Because I still feel to this day that she is the finest human being that I have ever known and her presence in the world makes it a better place for us all. I ask because I want to help her and protect her, and I have had to accept that I cannot do that alone.
Amanda is the very spirit of kindness, happiness and love. If you are acquainted with her personally you have likely seen this in her yourself. I know that in these times and this economy, and so close to the holidays, it is a lot to ask people to give. But if you are able, if you are willing, then please know that any help is appreciated. Donations will go to pay her medical expenses, insurance premiums, and our basic living expenses until we can adjust and get our feet back under us again.
I want to thank you all again for your prayers and your support. As hard as this has been, it would have been far worse without you all. I think we still have a long road ahead but it is a great comfort to know that we do not have to walk it alone.
A special thanks to Amanda's parents, who have been there every step of the way and without whom we would have been lost.
Brian
This past year has been a medical roller coaster. Amanda began to suffer a lot of seemingly unrelated symptoms including confusion and memory loss, joint pain, abdominal pain, anemia, and constant headaches. An MRI and CT were performed and found numerous small lesions on her brain. An appointment was scheduled with a neurologist but the soonest we could get in was over 4 months away. In the meantime her condition continued to deteriorate. She was eventually admitted to the ER when she began to see phantom shapes out of her peripheral vision. A special type of MRI, called an MRA, that looks at veins in the brain was performed, and an aneurysm was discovered. Due to its location it was determined that surgery should be performed to prevent a rupture. Fortunately, it would not be necessary to open her skull. Instead a catheter could be threaded from her leg into her head and the aneurysm sealed off.
A short time after this, one of her tests came back from the lab positive for lupus - a condition that in her case attacks the connective tissues between organs and it is now believed by her doctors to be responsible for a number of her symptoms. We have yet to get treatment for this condition. Misdiagnoses of this condition early on led to an unnecessary removal of her gall bladder, which turned out to be perfectly healthy.
We were told by the neurosurgeon that the aneurysm surgery was routine and very safe, with only a 1% chance of a rupture and a 3% chance of complication. Unfortunately, we were in that 3%. During surgery the aneurysm was punctured and blood leaked into her brain. The surgeon was almost immediately aware of the breach and was able to seal it off with a stent. But he could not determine how much blood had leaked through, nor could he assess her neurological condition until she was awake. I stayed the night in the hospital and around 2:30 a.m. I was woken to be told that she had had a "neurological event". What was eventually explained was that a clot had formed either in the stent or at the site of the aneurysm, had broken free and had against all odds managed to go down an extremely small vein into a very delicate part of the brain called the pons. There, it did some damage, and as a result she lost all motor control on the left side of her body. A stroke.
I will never find the words to capture how devastating this news was or that horrid empty feeling deep in my chest to see her lying there in that bed and know that there was nothing I could do to help her. She still had feeling in that left side. The doctors said it was a good sign but were reluctant to speculate how much function, if any, she would regain - or when.
I spent a lot of hours in the chapel that night, and every night thereafter. I didn't leave the hospital for four days. Over the next week she miraculously began to regain some of that control - first in her leg and later in her thumb. Her arm was the slowest to progress but now there is movement there too. She had surprised everyone.
Unfortunately, a day or two later her eyes stopped working properly, and she has had severe double vision. Neither eye can track to the left, and it hurts her to try. Used together the left eye will turn sharply to the inside. That has showed some improvement but it is unclear if it will ever resolve enough to use both eyes together. It may. We just don't know.
All that being said every estimate we have heard she has surpassed. She continues to gain strength and function, and throughout the entire experience she has never given in to despair. She is hopeful, and determined. It has been a two weeks now and for the first time yesterday I was able to watch my wife stand and walk. It was only a short distance, she was very weak, and she needed help - but she was walking.
As it has been explained to me it is possible, even probable, that she may never regain full function. But the doctors are very hopeful that she will be sufficiently functional and largely independent - in time.
During all of this life has been put on hold. The house sat empty. The food went bad. The bills remained unpaid. Now, I am having to turn my attention back to the practical matters of survival, and this includes the finances.
They project that Amanda will have to spend 4 -6 weeks in rehab. As she had not yet reached a full year with her employer she does not qualify for FMLA leave, and the non-FMLA leave will expire in about 2 weeks. At that point she will lose her job, and our household will lose 50% of its income for an unknown period of time. This will leave us about $800.00 short of making our bills each month. With the loss of her job she will also lose her insurance and we will have to go on COBRA to maintain coverage, which she absolutely must have. So in addition to being $800.00 short we will also have to come up with about another $800.00 to cover the COBRA. That’s around $1600.00 I have to pull out of thin air every 30 days...
I have not told her any of this yet. A huge part of her motivation to improve is the desire to return to work and resume her life. When I finally have to tell her this it will be very hard for her. Like me, she will be justifiably worried that we are going to lose our home, which we worked so hard for.
Truthfully, I don't know what to do. We have an amazing group of friends, family and co-workers. The support that we have received thus far has been incredible and deeply appreciated. On this site I have tried to set a goal based on the doctor’s estimate of her recovery time and our financial needs. I have to face the possibility that we may be at a reduced income for even as long as a year.
I was raised in such a way that it is very hard for me to accept help, and even harder to ask for it. But the truth is we need it, badly. I ask because I love her. Because I still feel to this day that she is the finest human being that I have ever known and her presence in the world makes it a better place for us all. I ask because I want to help her and protect her, and I have had to accept that I cannot do that alone.
Amanda is the very spirit of kindness, happiness and love. If you are acquainted with her personally you have likely seen this in her yourself. I know that in these times and this economy, and so close to the holidays, it is a lot to ask people to give. But if you are able, if you are willing, then please know that any help is appreciated. Donations will go to pay her medical expenses, insurance premiums, and our basic living expenses until we can adjust and get our feet back under us again.
I want to thank you all again for your prayers and your support. As hard as this has been, it would have been far worse without you all. I think we still have a long road ahead but it is a great comfort to know that we do not have to walk it alone.
A special thanks to Amanda's parents, who have been there every step of the way and without whom we would have been lost.
Brian

