Gift of Life: Rallying for Dana's Kidney Fund

On behalf of Dana’s family, we are fundraising for her much-needed kidney transplant. The emotional burden of such a life-changing surgery is more than enough to deal with and we would love to be able to ease the financial burden. PLEASE take the time to read and share her story.

The need for a new kidney came very unexpectedly and things are moving quickly. We want Dana to be able to focus on preparing for, undergoing, and recovering from kidney transplant surgery without worrying so much about the large financial strain (insurance covers a lot, but there will still be a large and ongoing outstanding balance for such a big procedure).

Those of you that know Dana, know that she has had some medical issues most of her adult life. You probably notice that she does her best to deal with them on her own and tries to live her best life without many complaints. You will also most likely know that she doesn’t typically ask for help from others and does not often talk about what’s going on outside of her small group of close friends and family. She now finds herself in the position where asking for help and talking about what’s happening in her life could actually save her life.

What started as a routine surgery back on Monday, March 20th, quickly turned into a nightmare that changed the trajectory of our sweet mom and friend’s life forever. After being home a couple of days, she was experiencing severe abdominal cramping and had diarrhea that looked more like blood. On Thursday the 24th, she called her surgeon and was advised to go to the ER. They drew some blood for testing, administered pain medicine and sent her home. Friday she had a follow up appointment with the surgeon. She was given a specimen jar and instructed to take a sample to the lab for testing - suspecting C-Diff. We got the sample to the lab first thing Saturday morning but found out they would not have results for 4 days. We were advised to go back to the ER.

We arrived at the ER around 10:00 am on Saturday morning. Dana was feeling very weak and overall not well at all. They started her on fluids and did a CT scan, along with bloodwork. Despite the fact that they were giving her liters of fluid, she was not producing any urine. The bloodwork showed that her creatinine level was elevated and she was admitted. They continued fluids and pain meds trying to keep her comfortable.

Sunday morning when she woke, she knew something was wrong and told the nurse that someone needed to take her seriously because she could feel her body shutting down. The nurse called the rounding doctor. Meanwhile, while waiting for the doctor, they tried to take her in for urologic surgery to find out if there was a blockage causing there to be no urine in her bladder. By the time the doctor had come in he was immediately concerned with a blood condition called TTP (Thrombotic Thrombocytopenic Purpura). He ordered more tests and called in Nephrology, Hematology and Neurology. He left the room to make these calls and they came to take Dana to surgery at which time she had a seizure. She did not go to surgery. She was taken for a CT scan to make sure there were no brain bleeds, which there were not. She then was taken to ICU to get a central line to start plasma exchanges, which is the treatment for TTP. He also advised that if it was not TTP, he suspected that it was HUS (Hemolytic Uremic Syndrome).

Dana’s first plasma exchange was Monday the 28th. She also met her nephrologist. He said that her creatinine level had been increasing and that both of her kidneys were functioning at 0%. She started dialysis immediately. Normally he would wait for a biopsy of the kidneys but there was no time for that. After dialysis she had a kidney biopsy which confirmed what her nephrologist suspected. Her kidneys were full of necrosis and not functioning. He said he has never seen kidneys with that level of necrosis so quickly in his career. On Thursday, March 30, Dana was able to produce a stool sample (sorry for the TMI) and it was tested. It came back positive with E-Coli and then we got the official diagnosis - STEC-HUS.

At this point her cognitive and neurological state had begun to decline very rapidly to the point that she was combative with everyone, including her family and close friends. She was angry, confused, pulling out any tubes that were in her, and throwing anything she could get her hands on. She had to be restrained and had to have a sitter in her room for constant observation 24/7. Psych was called in to try and help calm her with meds. The doctors told us it was encephalopathy that was causing the immense amount of neurological issues and that this was caused by the extreme amount of toxins in her blood. Hematology petitioned to get a drug called Soliris (Eculizumab). This drug is generally not used as a treatment for her type of HUS but because of the extensive neurological problems, they thought it was worth a try. This drug is so specialized and expensive ($50,000 per dose) that the head of the hematology department is the only person authorized to request this drug in the entire hospital. She was given two doses over a two week period.

All of her medical teams did not think she was going to live, but because of their expertise and care, she did! She was in the hospital for 25 days. She has no recollection of a very large portion of that time. She didn’t know her name, let alone was she able to comprehend the enormity of what was happening to her. Her muscles and mind atrophied horribly. She needed Occupational Therapy and Physical Therapy. She needed the help of two therapists and a walker to even stand at first. Her speech was slurred and she couldn't think of the correct words to form her thoughts.

When she was healthy enough to go home, the discharge doctor looked at her and said “none of us thought you would be leaving this hospital.” God had other plans for her and we are so thankful!

Dana has come a very long way since coming home. She worked so hard in PT and no longer needs a walker, and her speech has returned to normal for the most part. She has to have dialysis 3x per week for 4 hours each session. This dialysis is only the equivalent of her kidney functioning at 10%! She needs a kidney transplant so she can be healthy enough to function without dialysis. While the doctors were hopeful that her kidneys would regain some function, they have not. She was just given the diagnosis of End Stage Kidney Disease. She has weekly labs drawn and multiple follow-up appointments with all of her teams. Between dialysis, all of her other medical appointments and trying to get some hours in at work, it is tough. Additionally, she has not been able to drive since her seizure so she has been relying on friends and family to get her to and from all of her appointments. Let’s lighten this load for her!

What will ALL raised funds go towards?

A typical kidney transplant costs approximately $450,000. She has been, is and will be incurring so many expenses because of this, including:

The expenses already incurred are incredible and we haven’t even gotten to the transplant yet.

Fun/Not So Fun Facts

Since she was released from the hospital she has gone to:

We truly appreciate you taking the time to read this and share with everyone you know, if you are comfortable doing that. It was extremely difficult for us to write this, put Dana’s struggles out there for the public, accept the weakness and call out to all of those who will listen. She has always felt strong enough to get through the hard times on her own and has in most cases. But in this case, it is more than she can do on her own. We appreciate anything that you are willing to do to help. Donate! Share! Pray! Much love and thank you for taking time to read her story.

Below are details to see if YOU could be her donor! Share Your Spare!

Our hope is that we can find someone who is a match for her. A living-donor kidney transplant is when a kidney from a living donor is removed and placed into the recipient whose kidneys no longer function. Only one donated kidney is needed to replace two failed kidneys, which makes the living-donor a GREAT alternative to deceased-donor kidney transplant. The current wait for a kidney from the cadaver list is 5-7 years. Although you are born with 2 kidneys, you only need one and can lead a healthy, active life. So share your spare! A new kidney will change Dana’s life!

If you would like to see if you can be a donor for Dana, please see the photo below showing the Trinity Health phone number. When you call say that you want to begin the testing for Dana Tosh.

Thank you, from the bottom of our hearts. Much love!

Meagan, Brad and Angie - AKA “The Dream Team”