Re:New to the group
First off, how old is MC? Most people are not tested for PKD unless there are abnormal lab tests during a physical, or it happens to be caught from a scan performed for another medical reason. Like this forum has been discussing lately, there is the 50/50 chance of developing the disease, or not. So as a young girl there really was nothing to test for if her regular check-ups were okay. Because of the expense of genetic testing, it is not something done unless medically necessary, otherwise insurance will not cover it.
Obviously being in the military and having to deal with TriCare and military doctors might be a little bit of a pain, but military personnel must undergo a complete physical each year and ANY abnormality in her labwork will be followed up on. When the time comes to be referred to a Neph, MC will do what needs to be done. Not all decisions about one's medical care is optional when a person belongs to the military.
PKD can present with a slow or rapid progression..it all depends on the form of the disease. The fact that MC's father had ADPKD is concerning, but it is important to look at all the factors surrounding his early death. Was he being treated for PKD? Was he undergoing dialysis? Was he following a proper diet, taking his medications, etc? Did he have any other health issues?
For you and MC's mother, I can understand the worry, but if this young lady is a Marine..I'd give her the benefit of the doubt that she will do what she must to keep a proper watch on the PKD. God Bless her for her service!
Best wishes and prayers!
Michelle G.
MC's 22nd birthday is tomorrow. She does not have a formal diagnosis
of PKD yet, although the ER doctor who treated her for a UTI
discovered multiple cysts and legions on her kidneys and liver (via
ultrasound I believe). At that point he asked her if there was a
family history. He also discovered that she has a congenital
abnormality of having two ureters from one kidney and one from the
other. I don't know if her father had this or not. He was diagnosed
with PKD after a few bouts of kidney stones. Apparently his father
also had kidney problems but they didn't manefest until his
eighties. MC's father was diagnosed some time in his mid-forties
and it was determined that MC's mom would be a good match for kidney
donation. In further testing, however, it was discovered that he
had a pre-existing problem with his heart, and had without knowing
it, had already suffered a substantial heart attack. So kidney
transplantation was not an option given the condition of his heart.
He was on dialysis for quite some time and hypertension was an
issue, but I don't know many details about the time frame nor any
specifics about his actual passing. I've tried to be sensitive to
MC's mom in asking questions because she still has trouble coping
with his loss, even though seven years have passed, and I don't want
to push her over the edge. I did ask her if any other family
members have PKD and she told me that one of her husband's brothers
has the disease, and also one of MC's cousins, who is roughly the
same age as MC. It is somewhat encouraging to learn that that
progression times vary. This is something (I'm sure one of many
things!) that I didn't know. Thank you for reminding me that MC is
a Marine and that I should give her a little more credit as an
adult, and one who is in the service of our country. I need to see
her as the adult that she is, not the girl that she was. I'm glad
to hear that you have some knowledge of how military medical works.
Even though my son is in the Marines, the first time I had heard of
TriCare was when I placed a call to a nephrologist to explain the
situation with MC and to find out where to go for information. The
nephrologist's office kindly informed me to let MC call after her
referral is processed. I guess that makes perfect sense. I sort of
feel like an overprotective parent here, but MC is not my child.
I've encouraged self-advocacy with my own kids since they were
little. I don't worry about them being able to express themselves
or take action for themselves, but I guess I have been worrying
about MC because she is just now learning those skills. Anyway,
thank you for welcoming me and for listing to my concerns. One
thing that I would like to find for MC are specific questions that
she should ask during her first nephrology appointment. If you have
suggestions or can point me in the right direction that would be
great. I hope MC gets her laptop fixed soon so that she can join the
group herself. I think she's going to need advice and encouragement
from those who live with the disease. The way I see it, even if she
gets lucky and doesn't require a transplant or dialysis for another
20 years, it will still be beneficial for her to be thinking,
planning, and making smart health decisions now. Thank you for being
here....