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Message
re: Kidney Failure, unknown cause. Dialysis in future.
Posted on 5/27/24 at 7:19 am to Napoleon
Posted on 5/27/24 at 7:19 am to Napoleon
I’m glad you are looking to get a transplant. I hope you have a match from those who offered. And get on the hospital’s or your insurance provider’s arse if they are dragging their feet about a referral.
Be careful with the dialysis at home. I hear it sucks for those that do it. Or they don’t do it right and it causes problems.
Good luck baw. We are all praying for you.
Be careful with the dialysis at home. I hear it sucks for those that do it. Or they don’t do it right and it causes problems.
Good luck baw. We are all praying for you.
This post was edited on 5/27/24 at 7:20 am
1
Posted on 5/27/24 at 7:22 am to Napoleon
quote:
Dialysis in future
Dialysis is a pain in the arse
Good friend of mine's mother went through it, she would have to go sit at the place 2-3 hours 3-4 days a week.
Posted on 5/27/24 at 7:26 am to SUB
Pd at home uses fluids into the cavity of your stomach rather than cycling all your blood out your body over 4 hours. You do it while sleeping.
My choices are that or very a permanent access put into my arm. I don't want the latter.
My clinic sucks. I'm still waiting on referral. Of I don't get them in the next week or so I'm transferring clinics.
My choices are that or very a permanent access put into my arm. I don't want the latter.
My clinic sucks. I'm still waiting on referral. Of I don't get them in the next week or so I'm transferring clinics.
Posted on 5/27/24 at 7:27 am to The Torch
I go for four hours three days a week.
It does suck. Every Tues, Thursday and Saturday from 7 to 11.
It does suck. Every Tues, Thursday and Saturday from 7 to 11.
Posted on 5/27/24 at 7:46 am to Napoleon
Hey Napoleon, I’m praying for you man. I just recently saw this thread and have been meaning to post something.
I had a kidney transplant about 1 and a half years ago. I’ve gone through much of what you are having to go through.
Very luckily, I was able to get the transplant lined up prior to going on dialysis but it was a very close possibility. I had to go through dialysis processing and had made the choice to go with peritoneal dialysis at home if it was needed due to a delay in the surgery schedule.
I can also appreciate your hesitation about asking a loved one for a kidney transplant. I went through a big spiritual crisis about that, but my family would not possibly let me forgo the transplant.
All 8 of my siblings get tested, plus my wife and several of my cousins. I didn’t even need to ask. My wife put that information out on my behalf with the help of the transplant team. Family and friends lined up to offer me one of their organs!!
It was such an emotional time and I never felt so loved! I just needed to learn how to receive that love. I am so used to doing for others and being the responsible one for my family that learning to receive love and sacrifice was very difficult. But in the process, I learned in a new and powerful way, a bodily way, about God’s loving sacrifice for me. It transformed my faith in God in new and powerful ways, and not just for me, but for my whole circle of family and friends.
Let me know if you have any questions and I’ll be glad to share my experiences with you. You seem to be such a good dude, always willing to give advice on here. I feel like I know you already, being a fellow New Orleanian!
I had a kidney transplant about 1 and a half years ago. I’ve gone through much of what you are having to go through.
Very luckily, I was able to get the transplant lined up prior to going on dialysis but it was a very close possibility. I had to go through dialysis processing and had made the choice to go with peritoneal dialysis at home if it was needed due to a delay in the surgery schedule.
I can also appreciate your hesitation about asking a loved one for a kidney transplant. I went through a big spiritual crisis about that, but my family would not possibly let me forgo the transplant.
All 8 of my siblings get tested, plus my wife and several of my cousins. I didn’t even need to ask. My wife put that information out on my behalf with the help of the transplant team. Family and friends lined up to offer me one of their organs!!
It was such an emotional time and I never felt so loved! I just needed to learn how to receive that love. I am so used to doing for others and being the responsible one for my family that learning to receive love and sacrifice was very difficult. But in the process, I learned in a new and powerful way, a bodily way, about God’s loving sacrifice for me. It transformed my faith in God in new and powerful ways, and not just for me, but for my whole circle of family and friends.
Let me know if you have any questions and I’ll be glad to share my experiences with you. You seem to be such a good dude, always willing to give advice on here. I feel like I know you already, being a fellow New Orleanian!
Posted on 5/27/24 at 7:47 am to Napoleon
quote:
My gfr is up to 24% from 7%.
That's great news, Bawseph.
Mine has been at 31% for most of 7 years. A few anomaly readings have shown me from 28-36, but it always goes right back to 31%. I am able to live normally with 31, but be damned sure you watch that blood pressure.
Good luck.
This post was edited on 5/27/24 at 8:09 am
Posted on 5/27/24 at 8:17 am to Napoleon
quote:
Only downside is having these tube's coming out my chest and having to cover them before I shower with a stick on cover that rips my hair out.
I have idiopathic heart failure, and a bad back courtesy of the Marine Corps and crashing helicopters that take me to the hospital for various procedures around 8 times a year.
I’ve concluded it’s best to shave my chest and hand/arm hair anywhere a tube or port might be placed. Ripping that tape off, there’s just no easy way to do it. It’s a real pain, literally.
Glad to see these updates from you and positive attitude. I’m with you bro, in spirit and prayer every day.
You got this.
Posted on 5/27/24 at 8:42 am to Napoleon
I was diagnosed with “chronic kidney failure “ two years ago (I was 48) and it scared the hell out of me. I’m at 70% right now, so I’m in a stable position. I’m similar to you in that I eat right and exercise, so it was baffling to me that I would have kidney issues.
Posted on 5/27/24 at 8:47 am to Napoleon
Get the kidney ASAP
Seriously
Seriously
Posted on 5/27/24 at 9:26 am to Lithium
There's this crazy process you have to go through. First your nephologist has to send you to the transplant counseling. Then your living donors need to be tested. Then if all goes well you schedule the procedure.
I can get it done at Tulane so I know where I'll go.
But i haven't even done the transplant counseling. I don't know if my doctor is dropping the ball or they are just backed up.
It's kind of upsetting. Next week starts my sixth week of dialysis. So I would have thought I would have seen the counselor by now.
I can get it done at Tulane so I know where I'll go.
But i haven't even done the transplant counseling. I don't know if my doctor is dropping the ball or they are just backed up.
It's kind of upsetting. Next week starts my sixth week of dialysis. So I would have thought I would have seen the counselor by now.
Posted on 5/27/24 at 9:59 am to Napoleon
quote:
I can get it done at Tulane so I know where I'll go. But i haven't even done the transplant counseling. I don't know if my doctor is dropping the ball or they are just backed up.
Who is your nephrologist, if you don’t mind me asking? I went through several, mostly not by choice as they seemed to all rotate in and out of Ochsner, and then one left for six months for “personal reasons”.
I finally had my trusted PC refer me to someone he trusted, Dr. Josh Lowentritt, with LCMC over by Touro. Between him and getting a second opinion at The Mayo Clinic in Jacksonville, I finally got some doctors who got the ball rolling.
They were shocked that more had not been done sooner for me!
Apparently, getting a referral for a transplant must take a lot of paperwork and bureaucracy. It was about 10 months of me haggling Lowentritt from the moment he said he was going refer me to Tulane before he finally did and I got my first appointment there!
Tulane was overall a very good choice for me. They are better on the front end of the transplant process than on the back end, but still very good. I would recommend them, but of course they’ve moved from the old Tulane Hospital downtown out to the East Jefferson campus, so hopefully they’ve still got their act together.
I would advise you to stay on top of your nephrologist, hassle them, nag them, get mad if necessary, etc. to get that transplant referral done ASAP!
Go to a different nephrologist if necessary.
Posted on 5/27/24 at 10:02 am to Napoleon
quote:
There's this crazy process you have to go through. First your nephologist has to send you to the transplant counseling. Then your living donors need to be tested. Then if all goes well you schedule the procedure
I have to say, Tulane did a great job of navigating this process for me. It’s a lot, but they just told me what to do and where to go. I only had a few decisions to make. Honestly, it went pretty smoothly, just took a lot of testing and appointments.
Posted on 5/27/24 at 10:16 am to Jimbeaux
I have three. My hospital nephologist is Dr. Kane head of nephrology at Tulane. My clinic Nephologist is Dr. Chin an older Chinese lady. My LCMC nephologist is Dr. Hamm. At Ejgh.
I liked Dr. Kane so went to the comic he recommended which is a non profit clinic so it's kind of rough. There's a homeless encampment across the street (on corner of Canal and Calibourne)
And it's a long drive from Kenner.
I was thinking about moving to a Davita clinic. I want to travel next week and my clinic still hasn't found me a chair. But I feel like travel would be easier with davita or Freenius.
Plus I'm upset at how little I see my doctor or counselor.
I liked Dr. Kane so went to the comic he recommended which is a non profit clinic so it's kind of rough. There's a homeless encampment across the street (on corner of Canal and Calibourne)
And it's a long drive from Kenner.
I was thinking about moving to a Davita clinic. I want to travel next week and my clinic still hasn't found me a chair. But I feel like travel would be easier with davita or Freenius.
Plus I'm upset at how little I see my doctor or counselor.
Posted on 5/27/24 at 10:36 am to Napoleon
dang no idea what caused it? I have a friend at ochsner one of the sharpest docs I have known, hope you get on that list and get well.
This post was edited on 5/27/24 at 10:44 am
Posted on 5/27/24 at 11:02 am to Napoleon
Dialysis sucks. Been there, done that. You do nothing but sit but you’ll feel like you never have any energy ever again. But you’ll make it.
Good luck buddy. You’ll make it through.
Good luck buddy. You’ll make it through.
Posted on 5/27/24 at 11:15 am to Napoleon
Said prayers for you.
Major surgery is not so major anymore. Surgical intervention gets better every day.
Get the surgery and thank God you had several who volunteered to donate for you. If you desire to pay it back, become an advocate for organ donation lists. There are many not nearly as fortunate, who are still waiting.
Will continue to pray for this to work out.
God Bless You.
Major surgery is not so major anymore. Surgical intervention gets better every day.
Get the surgery and thank God you had several who volunteered to donate for you. If you desire to pay it back, become an advocate for organ donation lists. There are many not nearly as fortunate, who are still waiting.
Will continue to pray for this to work out.
God Bless You.
Posted on 5/27/24 at 11:16 am to Napoleon
Hope you're doing well. Did they ever figure out what caused this?
Posted on 5/27/24 at 12:42 pm to Oates Mustache
They think hypertension. But my pressure went to normal after I started dialysis. But untreated hypertension is the main theory. But they're are other issues they still haven't figured out. I'm anemic and have low hemoglobin. I had MSRA and calciphylaxis.
Posted on 5/27/24 at 12:49 pm to Napoleon
Sorry to hear, Nap.
Wishing the best for you in your recovery.
Wishing the best for you in your recovery.
Posted on 5/27/24 at 1:16 pm to stout
quote:
Everyone in my family has had gallbladder issues so I am trying not to have the same.
Are you fair, fat, forty or fiddy?
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