Are you aware?
I hope you know by now that PKD is an equal opportunity disease. Anyone can get PKD. For us, it’s a rare thing, in that Julian and I share a supermaxrare gene that includes PKD. There are many genes that cause it and for most, it will include a kidney transplant. For everyone, it will involve a care team or a few care teams, surgeries, medication, and complications of all that entails.
We are eternally grateful for the kidneys that my kids were lucky enough to get from Jody and Cheryl. They changed the trajectory of their lives and ours and we can’t repay them for what the past combined 27 years has meant to us. PKD can rarely derail us from living life and appreciating the gits of life through #OrganDonation.
For the not-so-great things that PKD impacts, here’s a list…
PKD is life-altering and lifelong. The kind of PKD that our kids have takes babies from families too early. For those that do survive the too high rate of infant mortality, it means that no matter how hard a caregiver works to make a childhood “typical,” it is never typical with ARPKD. Even if it’s a moderate case of it, you’re still impacted.
PKD changes what your life could have been financially. For us, and many like us, our finances revolve around insurance premiums and copays and how much of a part do we have to pay for hospital stays and labs. For a few years, the kids’ labs they took to check antibodies and other things specifically for transplanted people cost us about $1800 each. That was just labs. You can imagine hospital stays, treatments (anti-rejection treatment infusions alone were $125,000 in 2020, and I think our portion was $10K, having met our deductible already by May of that year.) Families like ours always are thinking about the cost of care.
PKD changes so many things about your life, no matter if you’re a patient or caregiver… marriages, family relationships and friendships. You can never know the pressures on all of those relationships. They are unimaginable. PKD means you’re always in treatment for something and often the treatments cause other issues and require more treatments.Last year I said that life with PKD is a very long, winding, hard-to-learn 103 step dance, backward. With a too-long dress that gets caught in your heels.
Now you’re aware of the not to known issues related to PKD.
