No News Meant Good News!

Day 71. 

It's been over a month since I last posted an update here. The big update is that my team (made up of rotating transplant doctors, a PA, an NP and a nurse) reached out to the PNH specialist and pediatric teams and learned that for marrow failure disorders of blood, the T-cells are coming in at a totally normal rate. This contrasted with their experience with the huge majority of their patients who have lymphoma or leukemia. So, using the data from other PNH patients or non-malignant blood disease (usually diagnosed in childhood), I was perfectly on track the whole time, and they keep reiterating that I'm right on schedule, but the schedule for this can be from 1-4 years.🙏  My T-cell chimerism donor percent did increase from 17% donor to 25%. Thank you for your prayers! They also did a chimerism measurement of my Natural Killer Cells, also a kind of lymphocyte, and that came back at 100%. So it is that group of NK cells which is protecting my myeloid colony (still at 100%) which makes all the other kinds of blood cells (red, white and platelets), all of which are at the low end of the normal range. Except for the Neutrophils, which are smack dab in the middle of the range which is awesome! 🙌 🙌 🙌  God is good! That pretty much wraps the technical part.

For the last month, my schedule has remained pretty steady with just going to the clinic two days a week: Mondays for blood draw and weekly covid test, and Thursdays for blood draw, dressing change (for external IV line) and "clinic". This is when I meet with my team. There has not been a single positive test for covid at SCCA since they started doing them (I don't know when that started or when the tests became available, but I've had one each week since arriving at the clinic June 4).  All in all, it's been pretty smooth. There have been annoyances; like the face thing, and my hair is getting pretty thin, occasional nausea, and one of the GVHD meds gives me HBP and then that makes my feet swell so I got compression socks, and... 😃 But really, I'm thankful!  This has gone so much better and smoother than I ever thought possible and there has been very little and infrequent pain.  One actual current concern, health-wise, is that I maintain muscle. They have you eat 50% more protein than you typically do so that you don't lose muscle as you build your new immune system. I've lost a couple of kilos, and they say that is from muscle when you're post-transplant. I'll be going to PT when I can get in, so that they can show me some things I can do to strengthen. But! I have been feeling so much better overall: not as tired in the day, not as much "weird feeling" after the higher doses of magnesium and cyclosporin, not as much "general malaise". Rick and I have been receiving communion nightly, some stretches over the phone, and both of us feel better and better! Jesus has won everything back for us at the cross. Trusting him in the slow, allopathic medicinal treatment way has been more of a stretch for me than for instant healing, inner healing (manifesting in physical health), or the right combo of fasting, detox, herbs and frequencies. It's been a trip, and He has been faithful and so, so, good. 

I have this great app which dovetails with everything at the clinic. It gives me the results of all my tests and also my appointments. A couple of days ago, I saw that they had added some new appointments besides my usual twice weekly. They've added: Dentist, Chest X-ray, Pulmonary Function, GYN, another Bone Marrow Aspiration, Medical Photography and Nutrition. Yep!!! They are scheduling the tests making sure that I am ready to GO HOME! 😭😭😭 Most of these tests are to make sure that I don't have any GVHD lurking anywhere. At the Medical Photography they will take pictures of my skin as a baseline and also measure the range of motion in my joints. Graft vs Host is the reason that Bone Marrow Transplants are not the standard protocol when it comes to PNH. Again, GVHD can be either acute (short term flare) or chronic (long term problem). It's horrible and I don't like to talk or think about it. This is why I'm still on 3 Immuno-suppressant drugs and probably will have to be on at least one of them for quite a while. Hopefully, it's not the one with all of the side effects. (First I heard it was, then I heard it was a different one.)

They are also weaning me off of my IV magnesium and switching me to oral so that I don't need my Hickman lines (external IV that hangs out of my chest) anymore. At one point I was self-administering 3 different IV's a day! (I would just throw the pump in a backpack and do what I needed to do: go to clinic, drive to the airport, go on a hike, or whatever). So that surgery should be scheduled before I leave as well and I'll be back to the old days (before my port even) when they take my blood draws through a vein in my arm. 

In a nutshell: 

I'm on schedule with the Chimerism results and the T-cells coming in.

It will take longer than anticipated. Please pray for the process to be smooth and on the shorter side!

My blood counts, kidney and liver function counts are all looking very good.

They are making appointments to assure that I don't have GVHD anywhere and that I am ready to go home! If all goes well, I should be home for my birthday!

I need to build muscle! 

PLEASE pray and declare that everything heals and integrates/dovetails beautifully with my donor's marrow and my tissues. Shalom in my spirit, soul and body! (This is my way of stating in the positive my desired outcome with no mention of what I don't desire.) 

It's really smokey here and not as fun. However it has been awesome to spend quality time with my sister and my husband! Sol (Skol)💜 Sister and Rick switched out the caregiver role Aug 30th and are switching again on the 16th. 

Thanks Skol Sister! (Also thanks to Cousin Steve for the hats!) 

We need rain in the West and healing in America. 🙏 🙏 🙏  I am encouraged by your calls, prayers, messages, etc. I love you and I may see some of you soon! 💗💗💗 Thank you all, God bless you all and God bless America! ~Sonja