Good luck and medical science to you.
So my dad had a rare form of kidney disease. Ummm focalsegmentalglumulersclerosis something or other. Regardless of the name, it fell under the generalized CKD LABEL.
Until you know specifics about the type and degree, there's not much specialized info to have.
Some notes though:
Making a low phosphorus diet is WAY harder than it seems.
Dialysis is an option, and it sucks for everyone.
Dialysis is NOT a one way street or a death sentence, but it's really not meant for long term care.
My dad has been dead for 10 years now, I have to hope there have been improvements made in that time, but a lot of people in his clinics got transplants then were back on the machine within a year. Really weigh the options, financially, emotionally, and quality of life wise BEFORE you find yourself with a comatose patient with no will, living trust, or life plan.
Until and unless they are put on fluid restriction due to dialysis, water. Water water water. Hydrate, make the kidneys work, no sugars or artificial sweeteners or any of that other poison people are so addicted to, water and possibly Pedialyte if they have trouble eating. Stay the hell away from energy drinks, as a general rule, but especially with existing kidney problems
Get second and third opinions where and when you can. I grew up on a first name basis with Thomas Starzle, the "father"of the kidney transplant. If he was still alive he would tell you the same thing. Things change weekly, younger doctors and older doctors have different opinions and care plans. Hear as many as you can to make the best decisions you can.
Ask all the questions. Ask them multiple times or in different ways. You're not trying to change the answer, you're trying to catch problems before they start or evolve.
Get a patient advocate, the sooner the better.
If a care home looks like it may be in the future, start looking for an accountant familiar with the ones they may go to. You're going to need to hide money for the care home not to take everything, even with insurance. You want that started BEFORE the patient gets to the center, not after. They will bleed you dry before kicking over to insurance.
Wait times suck, as you are seeing. Try to make as many appointments with as many people as you can as soon as you can. Not everyone is available when things turn into emergencies.
Keep active physically and mentally to the best of abilities.
Again, best of luck and medical science for everyone involved.
