Transplant Rejection news

Posted by jackiez @jackiez, Jul 15, 2022

Well I knew the journey would have ups and downs. And after my 15 mos checkup at Mayo this week I found out my heart is good but my lungs are showing some rejection. I will be adjusting meds and going back in a month for another bronchoscopy. Such a bummer as things had been going so well. Needing to hear some success stories if you’ve had a similar setback and comeback. Thanks!

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I am happy to hear that it's 1.5 now! Will you be testing weekly? Unfortunately, the injections are super expensive (thousands) so the insurance companies don't like them. Did you call your insurance company directly? Sometimes that helps 😊

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Hi @jackiez 😊
Good morning! Any update on your insurance company approval of your Neupogen shots? (Are you waiting for Medicare or a private insurance company to approve?)

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@hello1234

Hi @jackiez 😊
Good morning! Any update on your insurance company approval of your Neupogen shots? (Are you waiting for Medicare or a private insurance company to approve?)

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No still caught up on issues. Bloodwork again today so we’ll see if WBC continues to improve. Hopefully. Thanks for checking.

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@jackiez

No still caught up on issues. Bloodwork again today so we’ll see if WBC continues to improve. Hopefully. Thanks for checking.

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@jackiez 😊
Good luck today! I am hoping you continue to see a nice improvement in your WBC...maybe double at 3.0! Please post after they tell you your new number! I can't wait to hear.

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@jackiez

No still caught up on issues. Bloodwork again today so we’ll see if WBC continues to improve. Hopefully. Thanks for checking.

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@jackiez, I sure hope that you continue to see improvement in your bloodwork. Is the lab within reasonable distance from your home? Do you need an appointment, or have to fast, or can you just drop in when convenient for you?

I wish I could nudge the insurance to approve the Neupogen.
Sending Hugs.

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@rosemarya

@jackiez, I sure hope that you continue to see improvement in your bloodwork. Is the lab within reasonable distance from your home? Do you need an appointment, or have to fast, or can you just drop in when convenient for you?

I wish I could nudge the insurance to approve the Neupogen.
Sending Hugs.

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Labs are close and easy. So is infusion clinic. Insurance and communication with All the various parties is the issue.

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@hello1234

@jackiez 😊
Good luck today! I am hoping you continue to see a nice improvement in your WBC...maybe double at 3.0! Please post after they tell you your new number! I can't wait to hear.

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It skyrocketed to 7.4 without any shots. Guess it’s good I didn’t get a shot arranged 🙄. Will be interesting to see what Mayo says on Monday.

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@jackiez

It skyrocketed to 7.4 without any shots. Guess it’s good I didn’t get a shot arranged 🙄. Will be interesting to see what Mayo says on Monday.

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@jackiez 😊
Excellent news, thanks for the update! The same thing happened to me after reducing Cellcept. My WBC went to 6.0 and then after a few weeks it settled around 4.0 or 4.5 or so. Having my Cellcept dosage reduced was the answer to my low WBC and it finally stayed in the 4's. My last WBC was 4.9. (The Neupogen shots did almost nothing for me so I am thrilled they took down your Cellcept). I suffered for almost a year with an incredibly low WBC and running to the Cancer Center every week for three shots. Not to mention how scary it is to have no WBC against infection! I think your team will tell you on Monday to "stay the course", continue to test, and enjoy that you now have some white blood cells! Please keep us posted on what they say on Monday.

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@hello1234

@jackiez 😊
Excellent news, thanks for the update! The same thing happened to me after reducing Cellcept. My WBC went to 6.0 and then after a few weeks it settled around 4.0 or 4.5 or so. Having my Cellcept dosage reduced was the answer to my low WBC and it finally stayed in the 4's. My last WBC was 4.9. (The Neupogen shots did almost nothing for me so I am thrilled they took down your Cellcept). I suffered for almost a year with an incredibly low WBC and running to the Cancer Center every week for three shots. Not to mention how scary it is to have no WBC against infection! I think your team will tell you on Monday to "stay the course", continue to test, and enjoy that you now have some white blood cells! Please keep us posted on what they say on Monday.

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Thanks for sharing your experience. I am hopeful.

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@jackiez Just a quick update. I reread your med list and I see that they "held your Cellcept". My Cellcept was reduced, not "held" so your team may add a little Cellcept back in if they feel you need it going forward. Anyway, now we know it was the Cellcept dragging down your WBC and with that information they will be able to come up with the correct dosage to prevent any rejection moving forward. I think it's good news. 😊

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