Wednesday, August 17, 2016
Sunday, August 7, 2016
DONE with Plasmapheresis!!!
I am officially done with my plasmapheresis treatments! I
thought it would be a big day when I announced this, but I didn't even
know my last treatment was the final one.
I've got a nasty case of bronchitis (thank you ER germs 😡) and I've seriously never felt this miserable! Normally if I get sick, docs won't let me do treatments (the treatments remove all my antibodies, so I have no immune system). But my doc said to get on a strong antibiotic and push through the last two treatments if I could. So I went to my treatment Friday, coughing and miserable the whole time (thank you to the Moshae wedding and my amazing cousins for hanging out with me by FaceTime and cheering me up while I was there!!) Afterwards I got home and I seriously thought I would die. I felt so sick I couldn't even process it...I don't remember half the things that happened that evening. Thanks to my husband and his friend, they gave me a priesthood blessing and things got a little better. At least I felt a little more alive, and felt some hope and peace, like I could get through this. It's been a rough few days though. With such a bad reaction, we are not pushing through the last treatment.
And so officially...here is my anticlimactic, non-celebratory announcement: I'm done with my plasmapheresis treatments. (I feel like I need a tiny, non-impressive little flag to wave here! 😆) It actually is great news though. These treatments have been a very long and difficult road for me and for my family. The next stages might not be easy or fun, but I am soooo grateful to have this stage behind us!! Unless my brain lesion is definitively improved, I don't think I will ever agree to these treatments again. It's just been too hard, with too many complications.
Thank you to everyone who has been there to help us get through this!!
Thank you especially to my amazing husband James ...he's had to sacrifice and struggle alongside me every step of this treatment and the past year of me being sick. (This is not a small job!!) In many ways this trial rests heavier on his shoulders than mine, as he works to support me physically and emotionally, provide for our family, care for the kids, keep the house in order, cover medical expenses, visit me at treatments and in the hospital, worry about my safety, help me make hard decisions, and keep everything in our lives on track while I'm recovering. And he does all of this with a heart full of love and compassion. I'm so grateful!
Thank you to my family for dropping everything on a regular basis to help me and be with me. 💕 Thank you for being with me at doctors visits, treatments, tests, for hanging out with me all the days I was stuck in the hospital and the ER, for helping with our kids, bringing us meals, and for all of your love and emotional support. We couldn't survive this without you all!
Thank you to everyone who has come to sit with me through my crazy long (often five hour) treatments and to everyone who offered to come sit with me! Thank you to the wonderful ladies who cleaned my house while I was at the hospital on Friday (amazing!!) and to the wonderful friends and church members who have brought us meals on treatment days (life saving!!)
Thank you ALL for your encouragement and supportive comments here and by text. There have been days when all of this is just toooo much, and then I think of all the people praying for us and every expression of love and support, and it helps so much!
Last night i was in so much pain, and so miserable I couldn't sleep for hours. I had many conversations with the Lord, and I decided to thank him for all of my blessings (that usually helps me calm down). I have to say, the list of things and people I'm grateful for was so long it was overwhelming. So many of you were on that list. In an absolutely horrible moment of my day, I felt completely blessed. Thank you all for being the Lords blessings in my life 💕
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NEXT STEPS: Next week I have my PET scan on Tuesday, my central line taken out Wednesday, and MRI Thursday. (Some/all of this will change if I'm still this sick.) The following week I have appointments with my neuroradiologist and my neuro-oncologist, and we will likely be making a final decision about the brain biopsy and trying to figure out my treatment plan moving forward.
I've got a nasty case of bronchitis (thank you ER germs 😡) and I've seriously never felt this miserable! Normally if I get sick, docs won't let me do treatments (the treatments remove all my antibodies, so I have no immune system). But my doc said to get on a strong antibiotic and push through the last two treatments if I could. So I went to my treatment Friday, coughing and miserable the whole time (thank you to the Moshae wedding and my amazing cousins for hanging out with me by FaceTime and cheering me up while I was there!!) Afterwards I got home and I seriously thought I would die. I felt so sick I couldn't even process it...I don't remember half the things that happened that evening. Thanks to my husband and his friend, they gave me a priesthood blessing and things got a little better. At least I felt a little more alive, and felt some hope and peace, like I could get through this. It's been a rough few days though. With such a bad reaction, we are not pushing through the last treatment.
And so officially...here is my anticlimactic, non-celebratory announcement: I'm done with my plasmapheresis treatments. (I feel like I need a tiny, non-impressive little flag to wave here! 😆) It actually is great news though. These treatments have been a very long and difficult road for me and for my family. The next stages might not be easy or fun, but I am soooo grateful to have this stage behind us!! Unless my brain lesion is definitively improved, I don't think I will ever agree to these treatments again. It's just been too hard, with too many complications.
Thank you to everyone who has been there to help us get through this!!
Thank you especially to my amazing husband James ...he's had to sacrifice and struggle alongside me every step of this treatment and the past year of me being sick. (This is not a small job!!) In many ways this trial rests heavier on his shoulders than mine, as he works to support me physically and emotionally, provide for our family, care for the kids, keep the house in order, cover medical expenses, visit me at treatments and in the hospital, worry about my safety, help me make hard decisions, and keep everything in our lives on track while I'm recovering. And he does all of this with a heart full of love and compassion. I'm so grateful!
Thank you to my family for dropping everything on a regular basis to help me and be with me. 💕 Thank you for being with me at doctors visits, treatments, tests, for hanging out with me all the days I was stuck in the hospital and the ER, for helping with our kids, bringing us meals, and for all of your love and emotional support. We couldn't survive this without you all!
Thank you to everyone who has come to sit with me through my crazy long (often five hour) treatments and to everyone who offered to come sit with me! Thank you to the wonderful ladies who cleaned my house while I was at the hospital on Friday (amazing!!) and to the wonderful friends and church members who have brought us meals on treatment days (life saving!!)
Thank you ALL for your encouragement and supportive comments here and by text. There have been days when all of this is just toooo much, and then I think of all the people praying for us and every expression of love and support, and it helps so much!
Last night i was in so much pain, and so miserable I couldn't sleep for hours. I had many conversations with the Lord, and I decided to thank him for all of my blessings (that usually helps me calm down). I have to say, the list of things and people I'm grateful for was so long it was overwhelming. So many of you were on that list. In an absolutely horrible moment of my day, I felt completely blessed. Thank you all for being the Lords blessings in my life 💕
--------
NEXT STEPS: Next week I have my PET scan on Tuesday, my central line taken out Wednesday, and MRI Thursday. (Some/all of this will change if I'm still this sick.) The following week I have appointments with my neuroradiologist and my neuro-oncologist, and we will likely be making a final decision about the brain biopsy and trying to figure out my treatment plan moving forward.
Friday, August 5, 2016
Thursday, August 4, 2016
Treatment Drama & Cardiologist
UPDATE: had a strange reaction after my treatment Monday. Basically,
right at the end of treatment, the nurse pushed a final syringe of
saline and my heart and body started freaking out, I could barely
process what was happening. They took me over to the ER, but couldn't
pin down what happened. I met with a cardiologist this morning before
going to my next treatment.
Cardiologist: He says there are two likely explanations for what happened yesterday.
First, it's possible that when the nurse flushed my line it dislodged a small blood clot, or piece of an existing clot (the subclavian clot is still present) and sent it through my lungs. He said that could definitely explain the intense reaction in my heart and body. He said a small clot wouldn't show up on CT.
Cardiologist: He says there are two likely explanations for what happened yesterday.
First, it's possible that when the nurse flushed my line it dislodged a small blood clot, or piece of an existing clot (the subclavian clot is still present) and sent it through my lungs. He said that could definitely explain the intense reaction in my heart and body. He said a small clot wouldn't show up on CT.
The second possibility is that the nurse pushed an air bubble in through the syringe 😳
and sent air through my blood stream to my heart or lungs. He said
people can actually die from air bubbles, but if it's small enough, the
body can work it out. He said that would explain the way my heart and
body reacted.
He says that with this event, plus my frequent arrythmias and previous pericardial effusion, he wants to be thorough, and make sure we aren't missing anything. So he's ordering an echocardiogram, a cardiac stress test (treadmill), and a two week heart monitor to see if we can catch any of these arrythmias and see what they are. He's not expecting to find anything, but just wants to make sure.
Dr. Kartoumah has already been wanting this central line out, but he said with the fact that my subclavian clot is still present, and the possibility that it was a small clot in my lungs on Monday, he's scheduling to remove this line ASAP after my last treatment. If the neurologist wants more treatments, he's going to insist we give this vessel a rest. So the line is coming out next week no matter what!! Hooray!!
NEXT STEPS: Two more treatments, remove central line, then MRI scan, PET scan, appointment with neurologists, discussion with neuro oncologist, and make a decision about the brain biopsy. And the cardiac follow ups. I've come so far, but can't wait for this road to get where it's going so I can move on!!
He says that with this event, plus my frequent arrythmias and previous pericardial effusion, he wants to be thorough, and make sure we aren't missing anything. So he's ordering an echocardiogram, a cardiac stress test (treadmill), and a two week heart monitor to see if we can catch any of these arrythmias and see what they are. He's not expecting to find anything, but just wants to make sure.
Dr. Kartoumah has already been wanting this central line out, but he said with the fact that my subclavian clot is still present, and the possibility that it was a small clot in my lungs on Monday, he's scheduling to remove this line ASAP after my last treatment. If the neurologist wants more treatments, he's going to insist we give this vessel a rest. So the line is coming out next week no matter what!! Hooray!!
NEXT STEPS: Two more treatments, remove central line, then MRI scan, PET scan, appointment with neurologists, discussion with neuro oncologist, and make a decision about the brain biopsy. And the cardiac follow ups. I've come so far, but can't wait for this road to get where it's going so I can move on!!
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