Appointment Updates

Update #24

Hello friends! I have had a couple of appointments since my last post, so I thought I'd share a little update today!

Two weeks ago I saw my kidney doctor, and he was happy that I was feeling good. I had a flare up in July so that was a concern for him. My labwork later confirmed that my creatinine had gone backwards... however, the blessing is that it only went up by .4 points! He said that since I was stable he had planned on moving my appointments to every two months (instead of monthly visits). However, since I had a recent flare he split the difference and now I'll go every 6 weeks! Either way, I am thrilled to get a little bit of a break from so many appointments.

We chatted about treatment plans moving forward. He told me he was sending me to a different hematologist than the one I'm currently seeing for a 2nd appointment. He acknowledged that he knew I loved my current doctor and am only going to this to enterain him since he has specific questions. The big questions are regarding... my treatment longterm, transplant questions should I ultimately need one, and what do we do with my children - can their pediatrician do the testing (or) should they see a genetic counselor, etc.?

I shared my thoughts on being nervous about the possibility of a transplant, especially with the rejection rates we've seen being at 90% for my genetic mutation, and the death rates being so high as well. My kidney doctor told me that he understood where I'm coming from and that my concerns are valid. He said that he recently consulted with a hemotologist from UNC-Chapel Hill, and that doctor told him that the death rates are so high because they had no way to treat this disease until about 8 years ago, and because of that they had to let people die. That's why the current recorded death rates for this disease are so high (around 63-80%). So he said even though there's no cure, he is hopeful that the outcomes will eventually be better, but only time will tell, and it will take decades to reflect any improvement.

As we were sitting there discussing all the things, the doctor took a moment to encourage me. He shared with me that they have another patient that was diagnosed with aHUS around the same time as me. The other patient, really went downhill quickly. By the time they had their biopsy, their kidneys were completely nephrotic. They started on the Ultimiris infusions around the same time as me, and unfortunately have seen no improvement. The doctor shared with me that this patient is now on dialysis and rushing to get a transplant. He said that even though I'm still in a critical place with my disease, that I am doing better than their other patient.

That discussion really helped me understand why my kidney doctor was so aggressive with us for the first 7-8 months of this ordeal. That specific conversation did help clarify a lot and help me feel better about a lot of things. It also re-affirmed that James and I were doing all the right things when we were praying through every single decision and letting the Lord show us the way. He had every step of this plan laid out perfectly, and all I had to do was walk it out.

I go back to recheck my bloodwork next week since a few things were off.

Today I went to the Hematology appt at Wake Forest Cancer Center. As suspected, they didn't have much to tell me that my regular hematologist hadn't already. They re-confirmed the aHUS diagnosis. They did recommend genetic counseling for the kids. The said the kids can have the gene mutation and never get aHUS/HUS, but it would be good to know because there are things that we can do to mitigate their risk of developing the disease.

They also recommended for me to stay on the infusions for life to reduce my chances of recurring flares. Though that is common among aHUS patients to have recurrences, they said we can do a lot to try to reduce them, specifically - the infusions keeping my complement system in check. They did seem to agree that I need to be on the medicine longer before making big choices about transplants and dialysis since most of my numbers are relatively normal.

After that appointment, I went to a different hospital for my poetin shot. I don't know who was more excited, my nurse or me, but my hemoglobin is 11.8 - nearly normal!!! When that numer is 12+ no shot will be required. So we are praying it stays up, and no shot next month!

I recently shared on my personal social media that my son's travel baseball team received jerseys this past weekend with the aHUS foundation logo on them to raise awareness for this cause! What a blessing it was to see love in action like that. In addition to our church, friends, and family, our baseball crew has been incredible to us. They have offered to provide meals, shuttle kids around, and just generally help wherever we need it. I am the worst about asking for help, but I know they are always there if I need them. These families are mighty prayer warriors, and have become some of the dearest friends. We've been blessed to be a part of such a great team and are grateful to do life with such wonderful people. If you haven't visited the aHUS foundation website, I recommend checking it out! They have some fantastic information and are doing great things to try to find a cure!

Until next time,

Kimberly

(Sidenote: That is highly unusual to have two patients with such a rare disease in the same office, let alone have a flare up at the same time. Very interesting.) Though I don't know who this other person is, I have prayed for them several times. Please pray for them too.