1. < Kidney & Bladder

Stage 5 in under a year still waiting for dialysis.

Posted by Lunarlady @nicoletimm, May 10 2:17am

I had a heart attack and stroke on the same day almost a year ago, found high creatinine levels of almost 6, it took my hospital over 2 weeks to realize both of my ureters were blocked with stones, and it was beyond their ability to do anything other than put in nephrostomy tubes in and put me in an ambulance for 4 hrs to for another 2.5 week hospital stay and several surgeries later I was able to come home. But for the last 5 months I have been to nephrology appts every month and my kidney function is down to 13 and there is an infection nobody can find or successfully treat It gets better until the antibiotics are gone and it comes back I am still waiting on surgery to get an access for dialysis but I think I’m going to die before it gets done. My local nephrologist seem to be dragging their feet and I’m pretty sure I’m almost at the end my feet and hands burn every day now the nausea is out of control. There are days I can hardly get out of bed. I just don’t know why they haven’t done anything yet. When I arrived at the hospital last year, I was septic and the infections won’t go away. We are not well off, located in the middle of Montana and I still am waiting for surgery for access. I am completely out of hope and every day I feel more and more like I just wanna be done. How can I apply for financial assistance for a possible evaluation from the Mayo Clinic?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 10 9:05am

@nicoletimm, you've been through and are going through a lot of serious medical issues. It's so important to have a trusting relationship with your providers and feel confident in your care. Here's some possible options for you.

- To request an appointment at Mayo Clinic http://mayocl.in/1mtmR63
- Charitable Care and Financial Assistance at Mayo Clinic https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

You may also wish to look into the Mayo Clinic Care Network to find care closer to home.

The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

REPLY
1 reply
stephanierp | @stephanierp | May 10 2:08pm
In reply to @colleenyoung "@nicoletimm, you've been through and are going through a lot of serious medical issues. It's so..." + (show)
@colleenyoung

@nicoletimm, you've been through and are going through a lot of serious medical issues. It's so important to have a trusting relationship with your providers and feel confident in your care. Here's some possible options for you.

- To request an appointment at Mayo Clinic http://mayocl.in/1mtmR63
- Charitable Care and Financial Assistance at Mayo Clinic https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

You may also wish to look into the Mayo Clinic Care Network to find care closer to home.

The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Jump to this post

I am so sorry you are dealing with this. I was down to 12-13% kidney function before my transplant, and I remember how near to death I felt.

You mentioned money being an issue. I discovered when I was in kidney failure, that kidney failure is an automatic qualifier for Medicare- no two year wait. I’m sending basic info, in case it is helpful.

I know nothing of your current health situation, so I will not speak directly to that issue. However, I will share that I had to let a nephrologist go (terminate her services) and change doctors when I was in kidney failure and very ill. It was scary. However, sometimes when advocating for yourself, you have to be the squeaky wheel, that will not quit until you are receiving the care you need. And sometimes this means changing doctors. I believe most nephrologists accept Medicare, since many of their patients are in end-stage renal failure.

Please stay in touch and let us know how you are doing.
REPLY
1 reply
lngnglr | @lngnglr | May 10 2:21pm
In reply to @stephanierp "I am so sorry you are dealing with this. I was down to 12-13% kidney function..." + (show)
@stephanierp

I am so sorry you are dealing with this. I was down to 12-13% kidney function before my transplant, and I remember how near to death I felt.

You mentioned money being an issue. I discovered when I was in kidney failure, that kidney failure is an automatic qualifier for Medicare- no two year wait. I’m sending basic info, in case it is helpful.

I know nothing of your current health situation, so I will not speak directly to that issue. However, I will share that I had to let a nephrologist go (terminate her services) and change doctors when I was in kidney failure and very ill. It was scary. However, sometimes when advocating for yourself, you have to be the squeaky wheel, that will not quit until you are receiving the care you need. And sometimes this means changing doctors. I believe most nephrologists accept Medicare, since many of their patients are in end-stage renal failure.

Please stay in touch and let us know how you are doing.

Jump to this post

Thank you for the post. Definitely be an advocate for yourself. I really agree with what you shared. Learn as much as you can about your illnesses and research options that may work for you. Especially if you are dealing with several issues. In my experience medicine is very segregated and specialized. Unfortunately we are not just our kidneys or our circulatory system, etc. What I try to do is approach my various ailments from a holistic approach and find approaches from various perspectives.

REPLY
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | May 10 5:45pm

@nicoletimm welcome to Mayo Clinic Connect. You sure are going through a lot! Please know that you are not alone. Other posters have reached out to you with some great information and resources that may be helpful to you (including @colleenyoung the Mayo Clinic Connect Director and @stephanierp a successful kidney transplant recipient).
I myself had Chronic Kidney Disease (CKD) stage 4 and had gotten to eGFR of 14. I was able to be seen for kidney pre-transplant evaluation at Mayo transplant center in Rochester, MN. I was approved and accepted for transplant. That was in 2016. The Mayo team collaborates with my local nephrologist and endocrinologist. I am diabetic and have a history of hypertension (high blood pressure). Those are the 2 most common causes of kidney problems. My local doctors are helping me to treat these conditions and my kidney situation has improved & stabilized. I’m currently stage 3 and have an eGFR of 38. I’m telling this to try to encourage you and give you some hope. Could you follow the links above to get more information on resources that may be available to you?

REPLY
Please sign in or register to post a reply.