Help Georgia get a Kidney Auto Transplant

My daughter Georgia has been incredibly sick for the last 3 years. Before that she was a happy healthy kid with her whole life ahead of her. Three years ago at the age of 10.5, Georgia got an infection that caused an inflammation response in her GI track and kept her from being able to eat for a while. She lost some weight quickly. She had severe abdominal pain that kept us going in and out of the hospital for months. Eventually Georgia couldn’t eat or drink anything anymore, and had to be placed on a nasal feeding tube that was later placed surgically into her stomach. Georgia has been through more painful and invasive testing than anyone should have to go through in a lifetime. After seeing many specialists that threw up their hands because they had no idea what was wrong with her, she was diagnosed with a connective tissue disorder called Ehlers Danlos Syndrome. It is believed that her EDS is the main cause of all of her other medical conditions.

 Since Georgia first became sick, she has been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Mast Cell Activation Syndrome (MCAS), Migraines, Fibromyalgia and Tourette’s.

 In 2020, Georgia was diagnosed with a rare vascular compression disorder called Median Arcuate Ligament Syndrome (MALS). MALS is a compression of the Celiac Artery that supplies blood to the organs in your upper abdomen by the Median Arcuate Ligament. Georgia had open abdominal surgery to correct her MALS in January of 2021. (That surgery required us to travel to Connecticut to find an experienced surgeon. I was out of work for 3 weeks and had to pay for hotel charges and food for that entire time.) The surgeon assured us she would be better after surgery and removed the feeding tube that had been surgically placed in her stomach. Georgia’s pain from MALS was gone immediately after her surgery, but the severe nausea caused by her recovery kept her from eating once again. Georgia had to have another nasal feeding tube placed for about 6 months until the nausea calmed down. Georgia was still struggling with some stomach pain and nausea, but was able to eat enough to have her feeding tube removed in August of 2021.

In February of 2022, Georgia was struck by a sudden onset of severe left sided pain. We suspected a kidney stone because she had a history of stones. However, after a CT and exploratory cystoscopy, no stone was found. We were also noticing blood in Georgia’s urine at this time. After a lot of research and appointments, we learned about two other rare vascular compression disorders called Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). Nutcracker Syndrome is a compression of the left renal vein and May Thurner is a compression of the left iliac vein. What we learned is that patients who have one vascular compression corrected (like MALS), can often develop new or worsening compressions in other areas of the body. This seems to be more common in patients that have EDS, but can happen in others as well.

Georgia’s symptoms from NCS and MTS have gotten progressively worse since February of 2022. We believe that the extreme nausea and bloating that Georgia is experiencing now are related to the NCS and she is back on a feeding tube again. In April another nasal tube was placed, and in June she had another surgery to place it back in her stomach. She had another full GI work-up to see where everything stands. It showed that her Gastroparesis has progressed from mild in 2019 to moderate in 2022. Georgia’s pain is extreme, often hitting a 10/10 on a pain scale, but because she is only 13 no doctors want to prescribe her pain medications to help her. We recently found a pain management doctor that was willing to try splanchnic and hypogastric pain block injections to try to help Georgia with some of the pain. We were hoping they would last for days/weeks/months. Her pain relief lasted less than two hours. As a result we can’t even be sure the block helped at all and it wasn’t just from the sedation she was given during the block. The pain doctor does not feel like any other interventions that he could offer will be helpful to Georgia now.

In July, we traveled to Maryland to consult a top vascular surgeon at the University of Maryland. He performed a venogram on Georgia and was able to confirm her diagnosis of NCS and MTS. However, the surgical treatment options for these conditions are varied and not straightforward. Many patients experience complications to the surgery. Therefore, we are consulting several top surgeons in this field before making any final decisions about treatment. The last surgeon we were waiting to see had a waitlist of nearly 6 months. After he reviewed Georgia’s records, he recommended that she come to his location in Utah for several more tests before he makes his final treatment recommendations. We will be flying to Utah on 8/17/22 and will be there for about a week for Georgia to have several tests done and then meet with the surgeon to come up with a plan. After that, we will go on his surgery waiting list and it will probably be several more months of pain and suffering for Georgia before anything gets done.

I am a single parent to Georgia who is now 13, and her 4 year old sister. Due to all of Georgia’s medical appointments, I have already exhausted all of my vacation time for this year. (I haven’t had a day off that wasn’t for a medical appointment in 3 years.) I am using FMLA to protect my job, but that does not provide any income. I used the last of my vacation time for the trip to Maryland to see the vascular surgeon there. I will be taking unpaid time off for our trip to Utah. I will also have all the other expenses associated with the travel there including boarding our pets (which is crazy expensive!). We are really struggling just to make ends meet with all the inflation recently and these medical expenses are getting overwhelming.

The most likely treatment for Georgia’s current compressions is going to be a kidney autotransplant. This will be yet another open abdominal surgery that will involve moving her left kidney to a new location (either lower on the left side, or to the right pelvic area. (There are pros and cons of each that we are still researching.) The doctor in Utah may also be able to release her left iliac vein at the same time to hopefully relieve Georgia’s MTS and NCS at the same time. This will be another HUGE surgery for my 13 year old baby girl, and the results are not guaranteed. I am doing everything I possibly can to find her the best possible doctors and treatment options for her conditions, but this is still a very scary time for all of us. If we go through with the kidney autotransplant, then we will need to be in Utah for 3-4 weeks (assuming there are no immediate major complications). I will be out of work that entire time and we will have significant expenses associated with the travel and stay in Utah. We are trying to raise funds to help with the travel and medical bills for our first trip to Utah for testing 8/17/22 – 8/23/22, and for what we are praying will be Georgia’s surgery in a few months. Any help will be appreciated more than I can say. It is so hard to watch your child struggle in pain every single day, and not be able to help them. My daughter is a true fighter, and I will not give up until she gets her life back.

If you can’t donate, sharing her GoFundMe link and bumping posts is incredibly helpful!