- Joined
- Jan 14, 2013
- Messages
- 5,328
- Name
- Dave
Hey y'all, I am (very uncharacteristically) asking for prayers or whatever positive energy you have to offer.
My wife Niccole has an extremely rare medical condition that is hard to explain, but essentially her body's immune systems response to a fairly common mold found in caves in the Ozarks (maybe everywhere I don't know) is causing some of her lymph nodes to continually calcify, kinda like pearls, and they are pinching off her superior vena cava, the largest vein in the body and the one that drains the blood from the head, neck and arms back into the heart.
This began for us 8 years ago with her head and neck swelling, it took a while to get a diagnosis and when we did.... It wasn't good. She was 30 then.
The biggest problem we ran into was the unwillingness of doctors to take on illnesses they don't specialize in.
There are only 1 or 2 people diagnosed with this condition per year, world wide. Doctors are simply too afraid to get involved with what they don't understand. Renember that tv show "House", where the brilliant but snarky and cynical doctor takes on medical mysteries? That show is about as accurate about doctors as the movie Point Break is about sky diving... but we all already know that.
Eventually we did find a Dr. in the States who had published articles about it medical journals. The only one who has ever published anything about it. Unfortunately for us, he had died a few years earlier. Luckily though his son, Dr. John Doty is a super well regarded cardio vascular surgeon in his own right, and was interested in helping Niccole. (and to carry on his father's work in this rare field I'm guessing) He said if we could come to Salt Lake City, he will check her out. He could see her at 8am on Thurs. This was on Tues at 2pm.
Up to this point, everything we had been told was that there was nothing anyone could do, that it was too risky to put in a stent, and basically, tough shit.
So, having nothing to lose, we hopped in the car and drove straight from Springfield Missouri to Salt Lake City Utah on February 7th, 2012. Went through a blizzard across the length of Wyoming and across the Continental Divide, where the altitude became a whole other element of pressure on my wife. It was fucking intense and it took forever.
White Knuckle Wyoming. (thats a song I should I should write someday....)
We eventually got there a day early and looked for the address of a 2nd cousin I've never met, but my mom had set it up for us to stay there. There wasn't anybody home in the afternoon but there was supposed to be a key by the backdoor. There wasn't a key, but the backdoor wasn't locked. After looking very shady to the neighbors by looking around this house and waiting awkwardly for probably 5-10 min, we let ourselves in. After about 10 more minutes inside, looking at pictures on the refrigerator and names on their mail, we realized we were in the wrong peoples house! We were breaking and entering minus the breaking.
We got out of there without issue and laughed endlessly about it but we were so embarrassed (and a little nervous about returning to the scene of the accidental crime) that we never went back to find the right address.
Sorry for the tangent there.... I am scatter brained.
Anyways, we go in, see Dr. Doty, he says he can help her, he can do a stent. I asked if that was safe because the previous Dr had said it wasn't it was too risky. He assured me they have the best possible people and besides, what do we have to lose. The very next day they went in through her neck, down to the obstruction, and successfully put in a stent. Her vein went from 90% closed to 90% open almost immediately.
When I saw her post op, her face had already drained and she looked like my beautiful young wife again. Her massively swollen head neck and arms were back to almost normal. She was released to go home a couple days later and before long we got back to our normal lives, grateful for our miracle in Mormontown. (The people there were so good to us!)
Now my wife is 38 and she has been adding a few pounds the last couple of years but recently we began noticing the signs that this was creeping its way back. If she lays flat with a couple pillows, her swelling is bad in the morning. Is her head getting better? Are her arms swelling? No, its just natural weight gain many of us get as we approach 40. That's what we were both telling ourselves.
As the pandemic began getting more serious, her swelling became more pronounced and obvious but not so bad enough to go to an e.r. that won't help her anyways, espescially not one thats crawling with Covid-19 right now. That was the thought, until the day before yesterday. That morning Niccole woke up with her head swollen up like a beach ball, her eyes nearly swollen shut, the right side of her neck and her right arm were like balloons. Wrinkle-less smooth and twice the size they should be. She had fallen asleep flat on the bed, on her right side. Since then, her swelling has gone down to a, well still not great level, but it's improved and isn't as severe or threatening a dire situation right this moment. I have a blood pressure sleeve and a pulse ox device and she's been ok there. We are leaving to see Dr Doty back in SLC on Monday. She is scheduled for tests and if they are able to, they will attempt to re-stent her existing stent. That is the best case scenario. Maybe 2 stents will do the job. The surgeons there are the best and she will be in good hands, but still - we could use your prayers and positive energy.
Niccole is my everything. We began dating when I was 15 and she was 14 and it was love at first sight. Soul mates. When she was just 16 we became teenage parents. It wasn't always easy but hung through the tough times, we beat all the odds and statistics and naysayers and we made it work and our daughter Cheyenne, is now a brilliant, beautiful and kind hearted 21 year old.
I apologize for my rambling, tangents and mixed up writing.
I sincerely thank all of you who read through all this, and I thank you in advance for any good mojo you can send our way this week - and going forward too.
My wife Niccole has an extremely rare medical condition that is hard to explain, but essentially her body's immune systems response to a fairly common mold found in caves in the Ozarks (maybe everywhere I don't know) is causing some of her lymph nodes to continually calcify, kinda like pearls, and they are pinching off her superior vena cava, the largest vein in the body and the one that drains the blood from the head, neck and arms back into the heart.
This began for us 8 years ago with her head and neck swelling, it took a while to get a diagnosis and when we did.... It wasn't good. She was 30 then.
The biggest problem we ran into was the unwillingness of doctors to take on illnesses they don't specialize in.
There are only 1 or 2 people diagnosed with this condition per year, world wide. Doctors are simply too afraid to get involved with what they don't understand. Renember that tv show "House", where the brilliant but snarky and cynical doctor takes on medical mysteries? That show is about as accurate about doctors as the movie Point Break is about sky diving... but we all already know that.
Eventually we did find a Dr. in the States who had published articles about it medical journals. The only one who has ever published anything about it. Unfortunately for us, he had died a few years earlier. Luckily though his son, Dr. John Doty is a super well regarded cardio vascular surgeon in his own right, and was interested in helping Niccole. (and to carry on his father's work in this rare field I'm guessing) He said if we could come to Salt Lake City, he will check her out. He could see her at 8am on Thurs. This was on Tues at 2pm.
Up to this point, everything we had been told was that there was nothing anyone could do, that it was too risky to put in a stent, and basically, tough shit.
So, having nothing to lose, we hopped in the car and drove straight from Springfield Missouri to Salt Lake City Utah on February 7th, 2012. Went through a blizzard across the length of Wyoming and across the Continental Divide, where the altitude became a whole other element of pressure on my wife. It was fucking intense and it took forever.
White Knuckle Wyoming. (thats a song I should I should write someday....)
We eventually got there a day early and looked for the address of a 2nd cousin I've never met, but my mom had set it up for us to stay there. There wasn't anybody home in the afternoon but there was supposed to be a key by the backdoor. There wasn't a key, but the backdoor wasn't locked. After looking very shady to the neighbors by looking around this house and waiting awkwardly for probably 5-10 min, we let ourselves in. After about 10 more minutes inside, looking at pictures on the refrigerator and names on their mail, we realized we were in the wrong peoples house! We were breaking and entering minus the breaking.
We got out of there without issue and laughed endlessly about it but we were so embarrassed (and a little nervous about returning to the scene of the accidental crime) that we never went back to find the right address.
Sorry for the tangent there.... I am scatter brained.
Anyways, we go in, see Dr. Doty, he says he can help her, he can do a stent. I asked if that was safe because the previous Dr had said it wasn't it was too risky. He assured me they have the best possible people and besides, what do we have to lose. The very next day they went in through her neck, down to the obstruction, and successfully put in a stent. Her vein went from 90% closed to 90% open almost immediately.
When I saw her post op, her face had already drained and she looked like my beautiful young wife again. Her massively swollen head neck and arms were back to almost normal. She was released to go home a couple days later and before long we got back to our normal lives, grateful for our miracle in Mormontown. (The people there were so good to us!)
Now my wife is 38 and she has been adding a few pounds the last couple of years but recently we began noticing the signs that this was creeping its way back. If she lays flat with a couple pillows, her swelling is bad in the morning. Is her head getting better? Are her arms swelling? No, its just natural weight gain many of us get as we approach 40. That's what we were both telling ourselves.
As the pandemic began getting more serious, her swelling became more pronounced and obvious but not so bad enough to go to an e.r. that won't help her anyways, espescially not one thats crawling with Covid-19 right now. That was the thought, until the day before yesterday. That morning Niccole woke up with her head swollen up like a beach ball, her eyes nearly swollen shut, the right side of her neck and her right arm were like balloons. Wrinkle-less smooth and twice the size they should be. She had fallen asleep flat on the bed, on her right side. Since then, her swelling has gone down to a, well still not great level, but it's improved and isn't as severe or threatening a dire situation right this moment. I have a blood pressure sleeve and a pulse ox device and she's been ok there. We are leaving to see Dr Doty back in SLC on Monday. She is scheduled for tests and if they are able to, they will attempt to re-stent her existing stent. That is the best case scenario. Maybe 2 stents will do the job. The surgeons there are the best and she will be in good hands, but still - we could use your prayers and positive energy.
Niccole is my everything. We began dating when I was 15 and she was 14 and it was love at first sight. Soul mates. When she was just 16 we became teenage parents. It wasn't always easy but hung through the tough times, we beat all the odds and statistics and naysayers and we made it work and our daughter Cheyenne, is now a brilliant, beautiful and kind hearted 21 year old.
I apologize for my rambling, tangents and mixed up writing.
I sincerely thank all of you who read through all this, and I thank you in advance for any good mojo you can send our way this week - and going forward too.
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