Date: January 07, 2019 09:25PM
My 42-year-old son is in the ER of a local hospital in what sounds like renal failure. He has Alport's Syndrome. They say it's a relatively rare disease, but it gallops rampantly through my father's family.
They can't admit him to the hospital where he went, because there are no beds available. Supposedly (and it's been over 4 hours now) they are trying to transfer him to another area hospital. Once he is settled somewhere, they will probably start him on dialysis.
I have it too, but it is more forgiving to women. It is carried on the X chromosome, and somehow, the X that does not carry the defective gene mitigates the severity of the ailment.
Before he was conceived, I didn't know enough about it to be able to ask intelligent questions. I didn't even know that it had a name. And even if I had been able to ask, there weren't that many answers back then.
Please keep my boy in your loving thoughts. Your support means so much to me.
Date: January 10, 2019 01:04AM
Tevai, I have been wondering about this. You don't usually get frivolous notions, so here's my take on the "pink foam." I think it may have to do with the fact that during dialysis, the nature of the person's blood is changed. The toxins (which I think of as dark) are filtered out, and the cleansed blood is returned to the body.
The "pink" doesn't necessarily mean "insubstantial." It may mean clean, pure, full of life. At least, I hope so.
I've had a very strong sense of my father, looking out for the grandson he never met. He died of this same ailment in 1962, because there was no treatment available back then. His final month was during December (I've never been especially fond of Christmas since then.) He became very ill on the first, and died on the 30th.
I hope this doesn't sound too "woo." I am convinced that Dad is working backstage somehow, doing his best to make sure that things turn out right for the grandson I know he loves. It would be just like him. Dad would have taught my boy to play catch, swim, smack a baseball out of the park (heck, he taught ME!) - he was MEANT to be a grandpa. And this isn't Dad as he would be now, old and creaky. He appears in my awareness as young (my son's age), full of vitality, cheering for my boy. It's like he has brought extra troops, to help fight my boy's battle. Dad doesn't mean to lose this one.
It means everything to know that he is standing with us.
First dialysis is set for tomorrow morning, at 0700. Anybody who is awake at that hour, please send a positive thought toward my boy. (He is an exmo, like us.)
Thank you guys so much for your support! It's like a warm, padded quilt that keeps me warm when the going gets chilly.
Date: January 09, 2019 12:33AM
They will be putting in a stent for dialysis tomorrow. He is terribly depressed about this.
His step-sister, the RN, is acting as his medical advocate/adviser. She says it is difficult to convince him that the only alternative to dialysis is death. It's not negotiable. She is also trying to convince him (as I have, in the past) that it is possible for people on dialysis to be employed. It needs to be coordinated with an understanding employer, but it can be done. He has had a wobbly employment history and was unemployed at the time his kidneys failed, so it's not like there is a job for him to go back to.
As he will have to way to pay his apartment rent without a job, he will have to come and live with us. The wrench here is that he has two male cats (whom he loves dearly) who have been neutered, but who still have claws. This would be very traumatic with our declawed tortie girls. Possibly, if he would agree to have his cats de-clawed (and I know that there are people out there who consider this to be barbaric), everybody could get along. I don't know.
Our daughter said that he broke down and cried when she was visiting him. He is experiencing overwhelming losses just now. I wish I had answers.