Kai’s lab results from last week have been consistent with what we’ve been seeing trend over the last year - her medicine is starting to effect her kidneys, again. This isn’t very serious at this time, just something we have to keep an eye on.
She is also consistently anemic, no matter how much iron we give her. It’s just not absorbing well - her medicine blocks iron from being absorbed into the blood.
In light of that, there are some things we have to be mindful of:
We need to limit her refined sugar intake - Prograf (her med) causes elevated blood sugar levels which are tough on the kidneys.
Artificial sweeteners are a no no. Even Splenda - The National Kidney Foundation says that Splenda is okay but, Splenda is made by replacing part of a table-sugar molecule with chlorine atoms so that it is indigestible. However, it still has to be filtered through the liver and kidneys to exit the body. I’m not a chemist but, it doesn’t seem like ingesting chlorine is a great idea if you’re having kidney issues… or even if you’re not.
Even juice, more than a serving or so a day, without adequately flushing her kidneys with lots of water, could have an impact.
This is, basically, what we had to do for the first few years after transplant. Kai’s kidney’s took a huge hit because they had to try and do the liver’s job when it failed, and then she was on very high doses of Prograf (which is notoriously hard on the kidneys) and steroids, in addition to heavy pain relievers.
For the first year after transplant, Kai hovered near kidney failure. We were able to reverse much of the damage but, it is not uncommon for transplant patients to need a kidney transplant at some point. We’re hoping to avoid that for as long as possible.
Additionally, new evidence suggests that pomegranate juice has the same effects on medicine absorption as grapefruit juice! It significantly increases absorption into the blood stream. With a medication like Prograf, which is monitored closely to ensure a very specific dose, this can be dangerous. Too much and it can damage the kidneys further, increase immune suppression (at which point her body cannot fight of the CMV and EBV viruses that came with Ryan’s liver. Both are very serious for transplant patients. She was hospitalized off and on for 4 months due to CMV; EBV can cause a liver transplant-related cancer called PTLD). So… we knew no grapefruit juice. Now we know, no pomegranate juice!
Another thing that we’ve been keeping a close eye on is a scar-tissue adhesion that is forming a blockage in her intestine. It’s been developing for several years and she’ll need surgery to remove the adhesion, at some point. We have to keep her diet pretty healthy and full of fiber; otherwise, she could end up in quite a bit of pain and possibly need surgery, sooner, to resolve the blockage. (I'm SURE she'll be thrilled that I posted this when she's a preteen, someday!)
The good news is, she is no longer allergic to fish! She still has a reaction to eggs but, tests show that her egg allergy might slowly be abating, as well.
This is actually great news as we just added “severe allergic asthma” to the list of health struggles this past year…
In addition to dietary considerations, we need to be extra cautious going out and about, lately. The Measles outbreak is spreading rapidly and there are now cases to the north of us, in PA, to the south of us, in NoVA and in Ohio, where 58 cases have been identified in six eastern counties.
If you follow my blog, you know that Measles is pretty dangerous for anyone, but especially immune suppressed folks, the very old, very young and pregnant women.
We’ve been advised to get MMR boosters for the whole family. If you are a close friend or family member who we see/will see in the near future and are up to date on your vaccinations, you *should* be fine. It doesn’t hurt to get the booster (for your safety and for Kai’s) but, if you don’t, as long as you have received MMR vaccines as a child, it’s not a requirement for hanging with our family. However, if you are unvaccinated or not up to date on your vaccinations, we will have to pass.
MMR vaccines are usually administered between 6 months and 1 year and then again at 4 years old. 2 vaccines as a child offer between 95 and 99% protection from the Measles virus.
Because of the outbreaks, we were cautioned against taking Kai to the mall, she can’t visit indoor play places, public pools or any high-traffic, highly populated, indoor places with lots of touching surfaces. Hand sanitizer will need to be used in copious amounts.
Despite all of this extra precaution, Kai is still doing really well, comparatively! She’s her normal, spunky self, living each day to it’s absolute fullest! We’re just striving to help her do that as much as possible without putting her in a bubble. It’s a balancing act, and we appreciate your patience as we do our level best!
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