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update 10/4 -more prayers for my mom please

ktgrok

By ktgrok,
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ktgrok

ktgrok

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She had the "pre evaluation evaluation" at Duke last week. She desperately wants to qualify for the lung transplant as they have said she is in end stage lung disease and it is her only hope of survival. Hearing the worry and fear in my mom's voice is so hard. Financially, their insurance is good (medicare supplment) so the $1,300,000 cost should be covered almost entirely, so that's good. Meds are also covered. 

My mom's "dings" are that she is on opioids and would have to get off of them (she only takes 1/2 vicodin in the day and 1 at night, for her HORRID arthritis). She was told to talk to her doctor about using gabapentin/neurontin (she already takes celebrex as well). She is going to stop the pain meds, but I'm worried for her pain level. 

She needs to lose weight - she's already lost almost 10 lbs, so is complying with that. 

She needs a primary and secondary caregiver - social worker needs to speak to me as the secondary caregiver. I'm about to make that phone call and hope whatever I saw is the right thing to say. Apparantly they wanted to talk to me on Friday but I had no cell service due to the storm, so didn't know. 

The committee meets tomorrow to decide if she can move forward with the process and be considered a potential candidate. 

there is a lot more I could get into, but basically she's terrrified, and I'm a ball of stress. Between this, putting our elderly dog down last week, and a hurricane, it's been a bad 7 days. Doing a lot of stress crafting and stress bought a new sewing machine and some audio books, because if I'm listening to an audio book while sewing that keeps my brain so busy I can't think about all this. 

Anyway, off to call. Thank you all for your support and prayers. 

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ktgrok

ktgrok

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25 minutes ago, alisoncooks said:

Wow. That’s a lot. 
Would your mom have to live in the area for a certain amount of time post-transplant? (DH just had a bone marrow transplant at UNC, and you’re required to remain in the area 100 days.)

Yes, they would be relocating for 4-6 months at least, between pre-sx respiratory program, hospital, and post op program 

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ktgrok

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Thank you all. The phone call went really well, I think! I could feel all your well wishes. I know that for all of this a support system is important, and I truly feel that you all are part of my support system. So thank you. 

Social worker went over a lot with me, and I have to say I'm VERY lucky and blessed and GRATEFUL that if this happens, God willing, I have a lifestyle that would allow me to be there as much as needed. DH is 100% remote, and his jobs are very flexible regarding hours, and VERY compassionate about family matters. If, as is expected, he switches to only one main job, with his dream company that he currently is consulting for, in the beginning of the year, we will be even more flexible. It's a "work when you want, take off what time you need" small company that is run by a very charitable, compassionate person. Heck, a lot of their classes are "pay what you want". They would have no issue with him needing to work weird hours, or take paid/unpaid time off. And my Dad retired at the start of the pandemic, so he's totally flexible. Also, their insurance will cover things, and DH and I kept out a portion of what we made selling the old house and have kept it set aside, about 70K, plus he's supposed to get a 30K bonus at end of year, so we have a large cushion to cover me travling back and forth, housing, or to help my parents financially if need be. 

Worst case, we can and would relocate my entire immediate family to NC for however long needed. That is not the plan right now, more like me going back and forth a lot, with me staying for a 2 week stretch right after she is discharged from the hospital, as per social worker that is when I'll be needed most. But if say, Dad broke a leg or something and couldn't care for her, I can move up there for the whole 6 months or whatever. We have options, and are SO dang grateful we do. I know most don't. 

My son is also available, but the plan now is for him to move into my parents house on Merritt Island while they are in NC, and care for their house and dog. He loves to fish, and they have a dock, he recently bought a kayak he keeps there, and is right by the beach, so he is fine with that plan. It's less than an hour commute if he starts taking classes here in the meantime, or he can do classes online. We could always bring her dog to my house a few days a week to, although she is less in favor of that plan and worries my animals will bully hers (they won't), but it's an option. Or my sister's dog is littermates with my mom's dog so they can take her off and on, but my sister's dog DOES bully her a bit, lol. 

But, at this point, we are in a wait and see if they think she can move forward in the process. The committee meets tomorrow to see if she can continue on the path. If so, she will continue rehab here likely for a few more months, until she hits her "transplant window" where she is sick enough to need transplant ASAP, but not so sick she is too weak for sx. She in that time will lose the rest of the weight and build up her physical strength. She's doing rehab here 2 x a week, and they want her doing exercises at home at least one more day a week but pretty sure she's working on it daily. 

Then they will schedule a full evaluation - 5 days of testing - at some point in the next several months, I think. IF she passes all that, then at some point they have her move up there and start their own rehab program several hours a day, 5 days a week. She would also be doing education classes via zoom during that time. That usually is 2-5 weeks until they hit all the requirements physically, and have done the majority of the education classes. I would do the classes from home, to learn as well. 

Then she would be listed, then SX, then 2-4 weeks in the hospital until she can walk 18 laps (with a walker and/or oxygen is fine) around the floor, then she is discharged to their apt or whatever in the area for more physical and pulmonary therapy, for another 4-6 weeks. The first few weeks of that is when they would need me the most, as it is the hardest burden for the caregiver. 

Then eventually discharge to home, and returning every 3 months for first year, then every 6 months, eventually yearly. After the first year she can, if she chooses, switch care to a more local transplant center like Mayo or Shands. Although they continue to go back even a decade later for her lung cancer follow ups at Duke, so imagine they would continue that. I'd be available (or DH) to take her to those appointments if my Dad can't. 

So, continued prayers that they decide she can move forward, and that we figure out the logistics (we will, no matter what), and that she qualifies for the transplant and has a successful sx. Really, that's all tht matters, the rest we will figure out. 

I know I'm going to be on a roller coaster of emotions for the next year or so due to this, so will need to make a serious plan to handle that. I have a yoga class option tonight, I need to make myself do it, and stick with it. I am also going to keep crafting. We may pay someone to come handle cleaning every two weeks, and lawn work, to take burden off of me and let me focus on crafts, kids, homeschooling, etc. 

Oh, and the social worker said that there is a facebook group for transplant patients and caregivers and I could join right now, and that there are support groups outside of that as well.  And that the program has mental health workers available if need be (I think that part was for the patient, but was a reminder that maybe now is the time to seek out a therapist, or at least have some idea of how to find one, if I need one). 

And yeah...it was a REALLY stressful week. Blergh.  But I feel better, actually, after talking to the social worker. She was very upbeat and just talking to someone about actual steps helped. 

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ktgrok

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Link to the crafts I've done in the last week - while stress crafting, lol. (there is also another EPP hexagon block that I appliqued onto a tote bag I already had, but not sure where it is to get a picture, and it was a not very good first attempt, so no pic really needed, lol)

https://www.facebook.com/katie.loeschmeyer/posts/pfbid0344viSXn89pbZTmG7WtmfkB12Lf1gejzmffSi48xZ6Q4i1hYBm2qonGmf5pshkd7Sl

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Catwoman

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I have been praying for your mom, Katie, and I'll keep praying for her.

Please tell her that when she hears scary stories about transplants, that you mostly hear about the people who had an especially rough time with it. I know a lung transplant is worse than the liver transplant my dh had, but we heard so many terrifying stories and I was so worried, and he did great with it, and his recovery was so much quicker than anyone ever expected -- and we met a few lung transplant patients and they had done very well, too, and confessed that it hadn't been as bad as they were told it would be. I'm praying for that for your mom, too. 

 

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sheryl

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Sure will pray, Katie!  When does she return home?   You've had a challenging week to say the least!  I was thinking how you fared from the hurricane.  I have family in Bradenton that evac'd to Orlando for a few days.  I'm so sorry to hear about your pup!  That is hard as well as these major decisions surrounding your Mom's care.  I think it's wonderful she's requested and is being considered for a transplant.   Fantastic Medicare will pay for "almost all of it" I think you said.  

Just read your follow up and praying for the meeting tomorrow regarding your Mom.    

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ktgrok

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Just now, sheryl said:

Sure will pray, Katie!  When does she return home?   You've had a challenging week to say the least!  I was thinking how you fared from the hurricane.  I have family in Bradenton that evac'd to Orlando for a few days.  I'm so sorry to hear about your pup!  That is hard as well as these major decisions surrounding your Mom's care.  I think it's wonderful she's requested and is being considered for a transplant.   Fantastic Medicare will pay for "almost all of it" I think you said.  

Just read your follow up and praying for the meeting tomorrow regarding your Mom.    

They are already home. She had a few days of testing last week and then they drove home THROUGH the hurricane! Talk about stressful - I was shaking when I found out they were driving right through. They would NOT listen to reason and wait. Sigh. 

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sheryl

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1 minute ago, ktgrok said:

They are already home. She had a few days of testing last week and then they drove home THROUGH the hurricane! Talk about stressful - I was shaking when I found out they were driving right through. They would NOT listen to reason and wait. Sigh. 

Oh no!  Glad they got home safely.  Your plan sounds good and reasonable.  Praying for your Mom and Jann's brother!  

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ktgrok

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UPDATE!!  They had their department meeting today and she was approved to move forward!!!!!!!!!!!!!!!!!!!

They want her for the 5 days of testing - and they want it done by November 24th! As she put it, "this is getting real now". 

I'm SO grateful for this news - now to pray things continue to move forward and the rest of the tests don't show a problem. 

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  • ktgrok changed the title to update 10/4 -more prayers for my mom please
mommyoffive

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2 hours ago, ktgrok said:

UPDATE!!  They had their department meeting today and she was approved to move forward!!!!!!!!!!!!!!!!!!!

They want her for the 5 days of testing - and they want it done by November 24th! As she put it, "this is getting real now". 

I'm SO grateful for this news - now to pray things continue to move forward and the rest of the tests don't show a problem. 

AWWWWWWWWWWW.  There isn't even a good enough reaction for this!!!  Yes.  I am so happy for her.

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sheryl

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21 hours ago, ktgrok said:

UPDATE!!  They had their department meeting today and she was approved to move forward!!!!!!!!!!!!!!!!!!!

They want her for the 5 days of testing - and they want it done by November 24th! As she put it, "this is getting real now". 

I'm SO grateful for this news - now to pray things continue to move forward and the rest of the tests don't show a problem. 

Wow, just now seeing this and prayers for your Mom! Wonderful news!  

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