I haven't been on this forum in a while but I remember from the times in the past, many of you are well educated and empathetic. Well, I desperately need some of that now. My wife of over 50 years has a GFR number that puts her in stage 4 of CKD. Unfortunately, neither our family doctor nor the Nephrologist we are working with bothered to tell us (my wife and I) earlier -- stage 3 -- that we need to be part of a team, i.e., an Endocrinologist (for the diabetes component), a Nephrologist (for the kidney itself) and an experienced dietitian because that is the best way to slow the disease or perhaps reverse it.
I live in Arlington, TX and my question to you guys is, do you know any teams that we can become a part of, e.g., teams with proven positive track records in treating this hellish disease. Any ideas will be appreciated.
Richard, aka, Libshooter
Re: Stage 4 Kidney Disease
2I'm sorry to hear this, Richard. I don't have a team recommendation. However, maybe this will be useful. My wife has a form of lupus that attacks internal organs, and her kidneys have been ground zero. She's in the military medical system here in San Antonio and the team you outline sounds exactly the sort working with her. Her team wasn't put together in advance, it just evolved that way. I'd highly recommend connecting with those folks at your hospital to start as the networks for each specialty will know who best to consult. The good news is that stage 4 doesn't have to be forever - my wife went from 4 to 3 then 2. Get the pros on the case and don't give up. Blessings to you and your wife.LibShooter wrote: Sat Oct 27, 2018 3:11 pm I haven't been on this forum in a while but I remember from the times in the past, many of you are well educated and empathetic. Well, I desperately need some of that now. My wife of over 50 years has a GFR number that puts her in stage 4 of CKD. Unfortunately, neither our family doctor nor the Nephrologist we are working with bothered to tell us (my wife and I) earlier -- stage 3 -- that we need to be part of a team, i.e., an Endocrinologist (for the diabetes component), a Nephrologist (for the kidney itself) and an experienced dietitian because that is the best way to slow the disease or perhaps reverse it.
I live in Arlington, TX and my question to you guys is, do you know any teams that we can become a part of, e.g., teams with proven positive track records in treating this hellish disease. Any ideas will be appreciated.
Richard, aka, Libshooter
Andy
Re: Stage 4 Kidney Disease
3I am saddened to hear this. Have you looked into MD Anderson Cancer Center in Houston?
I’ll see if I can find some information on where and who to see in the Dallas Fort Worth area.
I’ll see if I can find some information on where and who to see in the Dallas Fort Worth area.
"Resistance is futile. You will be assimilated!" Loquacious of many. Texas Chapter Chief Cat Herder.
Re: Stage 4 Kidney Disease
4If you’re on Facebook join this group.
https://m.facebook.com/groups/ckdsupport
Also, I’m sure you have but your insurance company may have some resources. Not my favorite people to call, but who knows.
https://m.facebook.com/groups/ckdsupport
Also, I’m sure you have but your insurance company may have some resources. Not my favorite people to call, but who knows.
"Resistance is futile. You will be assimilated!" Loquacious of many. Texas Chapter Chief Cat Herder.
Re: Stage 4 Kidney Disease
5Sorry to hear about your wife. As a retired RN I have been out of it to long to know of anybody currently in this area. But two places to check Southwestern Medical School in Dallas or UNT Medical School in Fort Worth. She might need to have a referral from her Doctors to get into the clinics.
As a person that is very acquainted with our health system I will tell you like I told my patients and family I nursed. You and your wife are in charge of her health. Don't let them tell it can't be done and don't let the BS you. When you don't understand what they say or what they are going to do ask them to explain it in non-health professional terms.
As a person that is very acquainted with our health system I will tell you like I told my patients and family I nursed. You and your wife are in charge of her health. Don't let them tell it can't be done and don't let the BS you. When you don't understand what they say or what they are going to do ask them to explain it in non-health professional terms.
Facts do not cease to exist because they are ignored.-Huxley
"We can have democracy in this country, or we can have great wealth concentrated in the hands of a few, but we can't have both." ~ Louis Brandeis,
"We can have democracy in this country, or we can have great wealth concentrated in the hands of a few, but we can't have both." ~ Louis Brandeis,
Re: Stage 4 Kidney Disease
6Hi, LibShooter--I came here since you last checked in.sikacz wrote: Sat Oct 27, 2018 3:23 pm I am saddened to hear this. Have you looked into MD Anderson Cancer Center in Houston?
I’ll see if I can find some information on where and who to see in the Dallas Fort Worth area.
I was going to suggest MDA CC as well. A friend with infectious breast cancer, a very rare form, was successfully treated there and has been in remission for years. She and her husband traveled from West Virginia to Houston for treatment.
"Even if the bee could explain to the fly why pollen is better than shit, the fly could never understand."
Re: Stage 4 Kidney Disease
7The reason I didn't recommend MD Anderson is because it is a cancer center not a general hospital. Richard's wife is a diabetic with Chronic Kidney Disease as a result of the diabetes. No cancer involved. MD Anderson is great for Cancer research and treatment. It but a disclaimer My sister-in-law is a director of on of the research centers at MD Anderson.
Facts do not cease to exist because they are ignored.-Huxley
"We can have democracy in this country, or we can have great wealth concentrated in the hands of a few, but we can't have both." ~ Louis Brandeis,
"We can have democracy in this country, or we can have great wealth concentrated in the hands of a few, but we can't have both." ~ Louis Brandeis,
Re: Stage 4 Kidney Disease
8Prayers sent from California.
Please take time for a bit of recreation a couple of times a week, even if just an hour walk. I know from experience it's easy to burn out.
Dang, man. Hug your wife for us.
CDFingers
Please take time for a bit of recreation a couple of times a week, even if just an hour walk. I know from experience it's easy to burn out.
Dang, man. Hug your wife for us.
CDFingers
Neoliberals are cowards
Re: Stage 4 Kidney Disease
9My heart goes out to you and your wife. Medical decisions can be complicated but ask questions and get opinions, I agree with TT it's important that you and your wife take charge. And CDF is right, take care of yourself so you don't run down.
"Everyone is entitled to their own opinion, but not their own facts." - Daniel Patrick Moynihan
