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Asking for prayer for donor marrow % increase

 


Sailing class on Lake Union (view from apartment)

Hi again friends! It's day 39 post transplant. Just a quick update on my progress: all of the numbers that I have been watching continue to do pretty well. My hemoglobin, hematocrit and platelets have maintained about the same level since the last time and my neutrophils continue to climb. Also my face has much improved. (Praise hands!) 

The real news on the medical front is that they did a chimerism test to see what percent of the marrow is the donors. They measured two numbers: CD33+ cells (which were 100%) and CD3+ cells which were only 17%. This is quite low and they would have liked to have seen this number at at least 50% by this time. Eventually this should also be 100%. My doctor has a plan to retest me on Thursday the 13th (2 weeks after the initial test) to see two points to compare and note the trend. In the meantime, they've contacted my donor to see if he is unavailable on any dates in the near future to donate T-cell lymphocytes. This would be a much easier procedure for him than donating marrow, it's basically a blood draw. My doctor said that the lymphocytes will usually spur the marrow into action and resolve the issue. I hesitate to ask for prayer before we have a second set of data points to compare and I'm told it's not anything to worry about because it's something they can fix, but I'd still appreciate prayer!

I was actually told to scale back on two of my immunosuppressant medications, and then called later the same day to keep at the same levels. :(  When I met with my team, they explained that this 17% marrow number was the reason why. I would reeeeeally like to begin titrating off of these meds. One in particular has side effects that make me feel not awesome. The last time I had the chimerism test it took 5 days to get the results from the in-house lab and so that puts me well into next week before I would get the help from the donor's lymphocytes.

So, in this case, instead of "graft vs. host", it's more like "host vs. graft" and something of the previous cells are holding the new ones down, which is why the immunosuppressants. My first inclination was to focus on "allowing" the new cells their space and welcome, which is actually more of what I had been doing... and then I realized that this is basically out of my control and I need to trust and also surrender. After all of this thinking about graft and host I made up a little song: "Holy Ghost is my host, and He's the Host with the most, The Ghost is my host, and I host the Ghost." :) Based on Acts 17:28 "In Him we live and move and have our being." and Col 1:27 "Christ in me, the hope of glory!" 

Add: after researching, I found that DLI (donor lymphocyte infusion) has a problem of causing an immune response in the form of graft vs. host. A refresher on this GVH: it can be acute or chronic, and it can manifest in a myriad of different ways, much like the various autoimmune diseases. I would much rather see an increase in my labs on Thursday than to have to go through with the infusion and all that it entails. 

This is my prayer request: I need a jump in the % of donor marrow. This will help me with my energy level, mild headaches, high blood pressure and even my magnesium level, all of which are side effects of the level of Cyclosporine I am currently taking. (Cyclosporine eats up magnesium, therefore I give myself IV magnesium which makes me feel gross.) 

Thank you so much for praying! Prayer changes things and I am so thankful for you my team! 

Comments

  1. I like your little Holy Ghost song! Agreeing with you for what you are asking for--higher marrow% so you can get off Cyclosporine. Also, now into Him who can do exceedingly and abundantly above all we can ask or imagine. In the meantime, until your abundant happens, I pray strength and the blood of Jesus to come between you and the harmful side effects. Shalom, my friend, Erica

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  2. Thank you Erica! Yes, Shalom. <3

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  3. Sonia I had no idea you were ill! What you need in A-line of bone marrow transplant? I'm a positive as far as blood type goes. I have diabetes but it's under control and if there's anything and I mean anything I can do to help let me know. prayers of course!

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  4. Yes, prayers for increase in donor marrow! The Lord is pleased with your joy and thanksgiving over every victory, big and small. ❤️ What a wonderful picture you are of the grace of God! Be encouraged for in due season you will reap.......

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  5. Sounds like you’re make progress slowly but surely‼️I look forward to seeing you when you return home. Enjoy the lovely weather there. πŸ€— hugs to you and prayers for youπŸ™πŸΎπŸ™πŸΌ

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