Help me transition and understand my disease

Hello, my name is Vanessa. I am 33 years old, a mother of 5 children. I am starting this fund in hopes of financial support to pay for bills, medical travels, meals, and gas. I have some saved, but it is not nearly enough.

My recovery time is about 8-10 weeks, with other appointments scheduled for other producers to be done. This has had me out of work for months of having to pay bills with no income. Please consider our family in your thoughts and prayers. I pray this brings relief to my family financially and mentally. I thank you so much for your time and consideration.

My family and I moved to Denver, Colorado, about three years ago. We love the weather, and all this beautiful state has to offer. In the summer of 2022, my family and I were enjoying time at the park. When we got home, I realized that I was experiencing excruciating pain in my upper back/ kidney area, and it was not going away. I have always experienced pelvic pain because I also have Pelvic Congestion Syndrome.

While awaiting surgery, I was working for Cherry Creek School district. However, this chronic pain began to worsen. I am in severe pain when I stand too long, walk too long, sit for too long, and when I bend over, it is the worst. While working at an elementary school as a para educator, I found it very difficult to do many things, so I had to quit. Now, as a stay-at-home mom, I have a routine of things that need to be done, and I feel I am unable to continue my daily life and still take care of my family. I have no support as our extended family does not live in Denver to help us with the kids while I heal and recover after surgery. We have no form of income at the moment. So, we decided to relocate closer to my family, at the end of April of 2023.

(Pelvic congestion syndrome occurs when varicose veins develop around the ovaries, similar to varicose veins that occur in the legs. Then: The valves in the veins no longer function normally. This causes blood to back up. The veins become engorged or “congested,” which can be very painful.)

Fortunately, I was able to find a team of doctors that did a bunch of testing and imaging. This was when they discovered that I had Nutcracker Phenomenon. This means the renal vein and the aorta vein are restricting blood flow to my heart. I was also diagnosed with pelvic congestion syndrome along with pelvic veins disease. This means my veins are not working correctly, causing chronic pain. With this information and with further evaluations, doctors deemed me a perfect candidate for a rare and extensive surgery for mid-April 2023. I have no support as our extended family does not live in Denver to help us with the kids while I heal and recover after surgery. We have no form of income at the moment. So, we decided to relocate closer to family, at the end of April of 2023.

Unfortunately it was canceled at the last minute. I was told they did not have enough nurses to do a second producer that day. We already had plans on moving back to Minnesota where I have family.

We now live in Minnesota, moved from Denver in hopes of finding a team of doctors to help me here. Where I have family to help me with my children while I recover. I have not been able to hold a job to provide for my family. I last worked at Walmart in mid March. Great company but I was unable to keep up with work requirements. I am still in the process of hearing back from SSI, if I qualify or not. I applied in June of 2020.

It has been a long road to find a team. I worked with a kidney surgeon in Hennepin but I was turned away because he wanted to work more on pelvic floor dysfunction. Then was turned away for anything to do with the Nut Cracker. :(

I have been with physical therapy twice a week and am waiting to find and afford the wand for biofeedback. It is to help the mind retrain the body to use the right muscles again. I have a long road to go, to be anything like I was three years ago.

I have now found a team in Rochester Mayo Clinic. I have appointments set up starting, April 17th 2024, I will be doing a urine sample, blood tests, consultation with Stephen Ericken M.D. Nephrology, after that I have a surgery consultation with Mikel Prieto M.D.. I was told the producer could be scheduled soon, where he can fit me in his schedule.

Renal Autotransplant

Renal autotransplant (also known as renal autotransplantation or renal reimplantation) is a kidney-saving surgery that can be used in select patients. During the procedure, the kidney and ureter are removed and the kidney is then implanted—or placed—in a different part of the body, typically in the pelvis adjacent to the bladder. If the surgery is successful, the patient benefits from having two functioning kidneys even though one has been moved to a different location in the body.

Although they share the same terminology and essentially the same surgery, a kidney transplant and renal autotransplant are not the same thing. With a kidney transplant, a donor kidney from either a deceased or living donor is placed into the recipient, and immunosuppression is needed so the kidney is not rejected. With a renal autotransplant, the patient’s own kidney is removed and then transplanted back into the same patient, so immunosuppression is not needed.

Renal autotransplant is an effective treatment for some patients, including situations in which other treatment options have been exhausted.

Although a rare procedure, renal autotransplant has been shown to offer good outcomes while preserving renal function in cases of Nutcracker Syndrome, loin pain hematuria syndrome, vascular malformations, kidney stones, and kidney cancer. Because this surgery is generally not an option for all patients, your UCHealth team is multidisciplinary and has expertise in several different areas, including urology, interventional radiology, transplant surgery, psychiatry (behavioral health), addiction medicine, and social work. Together, they can assess each patient’s situation to determine if renal autotransplant is the right procedure for them.

Procedure Details

The surgery typically lasts between 4-8 hours, but times can vary. To start, a small rubber tube is placed into the bladder to help track urine output, and this remains in place for 3-7 days.

There are two main ways to perform the surgery. One involves a large incision in the middle of the abdomen to remove the kidney and then move it to a different part of the body. The other way involves a minimally invasive approach using either a small camera and small working ports or a surgical robot. The minimally invasive approach is generally the preferred method due to less blood loss, less pain, and a much quicker recovery.

Once the kidney has been removed, it is flushed with anticoagulation and preservation solutions in ice. The new location for the kidney is prepared and the kidney is placed in this new location by reconnecting the blood vessels of the kidney. Lastly, a new connection from the ureter to the bladder is made and a very fine tube (stent) is placed in the ureter to make sure the ureter stays open during recovery. This stent will stay in place for about 4 weeks after surgery. The typical hospital stay ranges from 3 to 7 days.

I am starting this fund in hopes of financial support to pay for bills, moving expenses, medical bills, meals, and gas. We have some saved, but it is not nearly enough. My recovery time is about 8-10 weeks, with other appointments scheduled for other producers to be done. This puts me out 3 months of having to pay bills with no income. Please consider our family in your thoughts and prayers. I pray this brings relief to my family financially and mentally. I thank you so much for your time and consideration.