...or Bronchiolitis obliterans with organizing pneumonia
(and that is why they call it BOOP).
That is what my mom has.
*my mom said she didn't want me to post any pictures of her, then she said she didn't care. I hope she really doesn't care.
So here's an update on her condition.
But first of all, THANK YOU for all your kind words, love and support during this whole ordeal. I can't believe the outpouring of love my family has received. All you family, friends and neighbors have all been so great! So, thank you from the bottom of my heart.
Okay, so as of the beginning of this month, my mom's overall lung function had decreased 47% since November, so A LOT! She was then diagnosed with Interstitial Lung Disease . Along came her new constant companions: oxygen and prednisone (and a cupboard full of other meds). Her Internist, Rheumatologist and Pulmonologist decided that the next best step was to do an Open Lung Biopsy, where they basically open her up and take out a chunk of her lung. fun. So with a few connections (the Thoracic Surgeon is my Uncles BF), she got in a few days later. WELL, the surgery went well and right away the Pathologist diagnosed her with BOOP (such a funny name).
So now what? BOOP is a very very rare not-your-typical pneumonia (even the staff at the "Heart & Lung Center" @ IMC hadn't heard of it). The Doctor's sent off my mom's biopsy findings to a BOOP specialist at Stanford University and as of 5:27 am on Monday, the 15th (HAPPY PRESIDENT'S DAY) we still haven't heard back from BOOP man.
Other than the silly name, BOOP, this could be great news, because BOOP can be treated in some cases, but in advanced cases it cannot be treated, and that isn't good. We don't know where my mom is on that spectrum. So, we wait and hope and pray for the BEST.
She still has Connective Tissue Disease (there has been some confusion about that), and always will as that is not treatable. As far as the Interstitial Lung Disease goes, my understanding is that she doesn't have that and it was a misdiagnosis.
We were told that my mom would be in the hospital for 4 to 6 days. She is on day 3 and is soooo ready to come home! Her doctors and nurses have been incredible, but besides the Morphine drip, the hospital is not a fun place to be. She gets poked and prodded every 20 minutes and she says the huge tube coming out of her lung is super uncomfortable (and it looks super uncomfortable), not to mention unsightly.
(and that is why they call it BOOP).
That is what my mom has.
*my mom said she didn't want me to post any pictures of her, then she said she didn't care. I hope she really doesn't care.
So here's an update on her condition.
But first of all, THANK YOU for all your kind words, love and support during this whole ordeal. I can't believe the outpouring of love my family has received. All you family, friends and neighbors have all been so great! So, thank you from the bottom of my heart.
Okay, so as of the beginning of this month, my mom's overall lung function had decreased 47% since November, so A LOT! She was then diagnosed with Interstitial Lung Disease . Along came her new constant companions: oxygen and prednisone (and a cupboard full of other meds). Her Internist, Rheumatologist and Pulmonologist decided that the next best step was to do an Open Lung Biopsy, where they basically open her up and take out a chunk of her lung. fun. So with a few connections (the Thoracic Surgeon is my Uncles BF), she got in a few days later. WELL, the surgery went well and right away the Pathologist diagnosed her with BOOP (such a funny name).
So now what? BOOP is a very very rare not-your-typical pneumonia (even the staff at the "Heart & Lung Center" @ IMC hadn't heard of it). The Doctor's sent off my mom's biopsy findings to a BOOP specialist at Stanford University and as of 5:27 am on Monday, the 15th (HAPPY PRESIDENT'S DAY) we still haven't heard back from BOOP man.
Other than the silly name, BOOP, this could be great news, because BOOP can be treated in some cases, but in advanced cases it cannot be treated, and that isn't good. We don't know where my mom is on that spectrum. So, we wait and hope and pray for the BEST.
She still has Connective Tissue Disease (there has been some confusion about that), and always will as that is not treatable. As far as the Interstitial Lung Disease goes, my understanding is that she doesn't have that and it was a misdiagnosis.
We were told that my mom would be in the hospital for 4 to 6 days. She is on day 3 and is soooo ready to come home! Her doctors and nurses have been incredible, but besides the Morphine drip, the hospital is not a fun place to be. She gets poked and prodded every 20 minutes and she says the huge tube coming out of her lung is super uncomfortable (and it looks super uncomfortable), not to mention unsightly.
What better place to spend Valentine's Day watching the Olympics?
My mom has been incredible during this time. She has been blessed with an amazing positive attitude and good spirits. She has had her "Debbie Downers," but who wouldn't? She has carried me and lifted me during this time, where it should have been the other way around.
I LOVE and ADORE my mom so much!
12 comments:
Please let me know when the BOOP man calls! Lots of love and prayers your way!
I'll run on up to Stanford and tell the BOOP man to hurry up since we live 5 minutes away. :) Looks like she's in good hands. We'll keep sending the prayers your way.
Wow! Crazy that she has this whole BOOP thing. I'm glad it's not the other thing you were talking about. Hope she hears from the BOOP man soon. And tell her not to worry about the pics. I think she looks wonderful!
Oh...I hope it's boop. I love you guys... and I love her pose on the hospital bed. So cute.
Oh Jami-- my heart goes out to you and your's. I know how much you adore your family, and moms are the greatest invention ever.
Please keep us posted! Lots of love for you and your fam! Your mom is such a tough lady, I admire her so much!
I hope the boop dr has good news! looks like the hospital was fun on v day. what a great way to show you love some one.
At first I thought this post was related to Betty Boop and almost didn't read it.
I'm glad I did and I hope the biopsy comes back with good news! We love the Nelsons!
Good Family
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Good Family
Nice article you got here. It would be great to read more concerning this topic.
thinking of you and your fam. hope your mom is doing better. she sounds like an amazing woman! i don't know how i've missed all your posts lately, but i have. i messaged you on fb, but i'm comin to ut mar 3rd for a few days, so if you wanna hang let me know! i'd love to see you!
love
rachael
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