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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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jackiez | @jackiez | Aug 11, 2022
In reply to @hello1234 "Hi @jackiez Early in my post transplant treatment, when I was taking the full dose of..." + (show)
@hello1234

Hi @jackiez
Early in my post transplant treatment, when I was taking the full dose of Cellcept 1000mg bid, it caused extremely low WBC. I had several series of Neupogen shots over months. At one point, I was going to my local cancer center every week on Monday, Tuesday and Wednesday at 9am. All the nurses knew me because I was a "regular ". The Neupogen shots were not that helpful. But once my Cellcept was reduced, my WBC returned to the low end of the normal range pretty quickly. Now that your Cellcept is "on hold" I think you will see a nice increase in your WBC at your next blood work. 😊 I was going weekly for labs to monitor the low WBC. When are your next labs?

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It’s been low for over two weeks with no Cellcept. I go tomorrow for bloodwork again. Insurance hasn’t improved Neupogen so now we’re working through that…so bronchoscopy for next week is delayed until Sept when we can get WBC up again. Always something!

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1 reply
hello1234 | @hello1234 | Aug 11, 2022
In reply to @jackiez "It’s been low for over two weeks with no Cellcept. I go tomorrow for bloodwork again...." + (show)
@jackiez

It’s been low for over two weeks with no Cellcept. I go tomorrow for bloodwork again. Insurance hasn’t improved Neupogen so now we’re working through that…so bronchoscopy for next week is delayed until Sept when we can get WBC up again. Always something!

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Hi @jackiez 😊 Don't worry. Two weeks is actually not that long without Cellcept, I am sure you will start to see a slow improvement of your WBC in the coming weeks even before you take your Neupogen shots. It sounds like your team is also confident that by September (a couple of weeks!) your WBC issue will start to resolve in time for your procedure. Are they doing a bronchoscopy to do a protocol biopsy or just to take a look?

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jackiez | @jackiez | Aug 12, 2022

I had 1 of 12 samples from my July biopsy show rejection. So back to take another look to monitor after tweaking meds.

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1 reply
hello1234 | @hello1234 | Aug 12, 2022
In reply to @jackiez "I had 1 of 12 samples from my July biopsy show rejection. So back to take..." + (show)
@jackiez

I had 1 of 12 samples from my July biopsy show rejection. So back to take another look to monitor after tweaking meds.

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@jackiez Got it! Please keep us posted on your WBC today after you receive the results. I have my fingers crossed that you see a nice improvement on today's test. I definitely know what it's like to track a low WBC. I was down to 1.5. How low are you running?

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1 reply
jackiez | @jackiez | Aug 12, 2022
In reply to @hello1234 "@jackiez Got it! Please keep us posted on your WBC today after you receive the results...." + (show)
@hello1234

@jackiez Got it! Please keep us posted on your WBC today after you receive the results. I have my fingers crossed that you see a nice improvement on today's test. I definitely know what it's like to track a low WBC. I was down to 1.5. How low are you running?

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0.5 !

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hello1234 | @hello1234 | Aug 12, 2022

@jackiez In addition to Prednisone, which meds are you taking now? Is .5 the same or lower than your last result?

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jackiez | @jackiez | Aug 13, 2022

Ha-several meds. Sirolimus, Valcyte, Bactrim, lasix, panprotozole, azithromyacin, to name the main ones. And the WBC was the same last week that’s why we held the Cellcept. We’ll see what Friday’s lab results show.

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1 reply
hello1234 | @hello1234 | Aug 14, 2022
In reply to @jackiez "Ha-several meds. Sirolimus, Valcyte, Bactrim, lasix, panprotozole, azithromyacin, to name the main ones. And the WBC..." + (show)
@jackiez

Ha-several meds. Sirolimus, Valcyte, Bactrim, lasix, panprotozole, azithromyacin, to name the main ones. And the WBC was the same last week that’s why we held the Cellcept. We’ll see what Friday’s lab results show.

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Hi @jackiez 😊
I have my fingers crossed that your Friday labs show some improvement in your WBC. Reducing the Cellcept dosage definitely helped my WBC in a big way, so I am hopeful that you will begin to see the same kind of results. I had neutropenia and leukopenia for almost a year (with regular Neupogen shots) until the Cellcept dosage was reduced. Please keep us posted on your lab result!

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hello1234 | @hello1234 | Aug 16, 2022

Hi @jackiez 😊 Any news on your Friday WBC? I am hoping that there is a slight improvement from your .5 this time. ❤

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1 reply
jackiez | @jackiez | Aug 16, 2022
In reply to @hello1234 "Hi @jackiez 😊 Any news on your Friday WBC? I am hoping that there is a..." + (show)
@hello1234

Hi @jackiez 😊 Any news on your Friday WBC? I am hoping that there is a slight improvement from your .5 this time. ❤

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Thanks for checking! Yes, 1.5….but still waiting on insurance approval for injections…

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