Let’s Help Tate ❤️

Long post....Amy is not on Facebook, she wrote Tate’s story last night when I told her that some friends wanted to help us and wanted to cover the cost Tate’s new meds. It explains our journey w Tate’s chronic illnesses. So thankful for the words of encouragement, offers for help and the donations. We are not looking for pity or money. We are exasperated and desperate for some relief for Tate.

Here is Tate Nicholson’s story.

Tate’s Story

     We are the Nicholsons. Proud parents of a son named Tate, born May 11, 1999. He has always been a sweet boy. I can describe Tate in three words: charming, charismatic and strong. He took up with acting at the age of 4. He dabbled in gymnastics and soccer once, but his passion for theatre will always be his first love. We enjoyed watching him through the years. At age 11, Tate experienced his first kidney stone on Thanksgiving morning. We had no clue what was going on at 2am that morning. He was screaming in pain and vomiting. I rushed him to the closest hospital having to stop so he could vomit on the way. When the doctor’s told me he was having a kidney stone, I couldn’t imagine how or why. No one in our family has this and I didn’t know anything about them. Then the doctor’s told me they were administering morphine through an IV. I thought morphine was for old dying people. I was nervous to put my 11 year old on morphine. It was hard to watch him laying in a bed screaming like I did during childbirth. Then the morphine hit and put him to sleep. I had many questions. How was this going to help get it out? I thought they would just remove it and we could go home. Nope, that was just to take the edge off the pain. He would need to come home and wait for it to pass. Kind of like waiting to birth a child. His labor pains had begun. They prescribed him hydrocodone to help with the pain and passing of this stone. He was given a strainer to try to catch the stone, so we could analyze it. I was still clueless as to what this would entail. Stones can take anywhere from a day to months to pass. Yikes! The first stone took about a week to pass. After it was over, he went back to his happy life. I prayed that this would never happen again and researched how to keep them at bay. Little did we know the journey we were about to embark on.

     Three months later, another stone! Then a few months later, more stones would come. Tate typically passed a stone every three to four months from then on. He would skip school on days he couldn’t manage and we spent many a night in the ER. When the stones would pass, everything just seemed to go back to normal. He would still perform, go to school and hang out with friends. 

     Then in February 2017, Tate got a stone that just wouldn’t pass. He was in pain the whole month. He was in two shows. A high school play and a community theatre play called “The Lion in Winter”. It was his last play. Unbeknownst to us, Tate had managed on every hydrocodone we had in the house. He was just trying to make it to his last performance on Feb. 26th. The next day, he couldn’t go to school. He needed a hospital and told us something was wrong. He knew he was passing a stone, but his pain had been consistent for a whole month. We just thought this was a bigger than normal stone to pass and that the doctors would take a look. He was admitted to Dallas City Medical hospital on Feb. 27, 2017. We spent a week in the hospital. Doctor’s ran tons of tests, cat scans, sonograms, MRI’s, glucose testing, you name it, Tate did it. Doctor’s were baffled, they couldn’t find anything wrong. Things checked out normal. So, they had him transferred by ambulance to Children’s Medical downtown. This was when I knew something was really wrong. My motherly instincts had kicked in by now. I knew we were dealing with something we couldn’t put a finger on. We were told that Tate had about 40 stones to pass! It took the breath out of me to hear that. I thought having stones every three to four months was bad. How was Tate going to manage this? He couldn’t. Tate was never able to get out of bed for very long. He laid in a hospital bed from Feb. 27th to Aug. 7th of 2017 at Children’s. I pretty much moved in and lived downtown with Tate. He was hooked up to IV’s taking all kinds of narcotics. Passing stones week after week after week. 

     During this time, I had reached out to the Mayo Clinic in Arizona. I had got him a specialist there because I thought they would be able to handle a case of this magnitude and I was hoping they could make the stones stop. We traveled every three months to see the doctors at Mayo. All the while he kept getting sicker. Now, he had esophagus issues, colon issues and stomach problems. We saw a wonderful gastro doctor at Mayo and she was able to help with his stomach and colon issues. She diagnosed him with dyssynergia. It is caused from stress and is a pelvic floor dysfunction where your muscles can’t relax causing severe constipation and can’t have a bowel movement. Again, another very painful debilitating disease. He can’t eat and throws up because he can’t go to the bathroom. Very painful. He has had 4 procedures at Mayo to help him now. He will have to continue this for the rest of his life. 

     In August, Children’s told us that because Tate was 18 now, we would have to find another doctor and he could no longer stay. Now, what were we going to do? He clearly can’t manage on his own. Now, the real struggle was beginning. We would have to visit hospitals almost every week because he couldn’t manage the pain on hydrocodone and tramadol alone. Everytime we went, they would want to do a cat scan. Tate had 9 cat scans that year. We didn’t want to do any more, but they wouldn’t give him meds without seeing if the stone was stuck. Clearly, look at his chart and you can see he has 40 stones to pass. I have to fight with doctors every visit. I have watched on more than one occasion my son lay in a bed shaking and screaming while they do nothing because we don’t want to expose my son to more radiation. Nor did he. We found Dr. Alang. An amazing internal medicine doctor. How we managed to find a good doctor right off the bat was a stroke of luck. We weren’t having much luck. Dr. Alang has been Tate’s doctor ever since. He manages Tates pain and everything he has to deal with. 

     We were referred to pain management clinics. They don’t want to treat physical pain. They only want to treat neurological pain. Pain doctors have dismissed us from their care. They don’t want to deal or treat Tate for the amount of pain he endures daily. Other specialists have dismissed him, not knowing what to do. We went back to Mayo in 2018 to see the Urologist and Nephrologist and things were much worse. Tate now had 70 stones! Again, we kept searching for answers, seeking out many doctors who couldn’t help. Trying everything you can think of to try to diminish the stones. Everything from acupuncture to holistic medicine to drinking crazy concoctions and all kinds of diets. We even got Tate a nutritionist. Nothing helped. We kept seeing doctors. Tate started to produce bigger stones now. The kind that gets stuck and you have to remove them.  Dr. Alang referred Tate to one of his friends Dr. Landau. He has removed several stones from Tate. The most painful procedure you could ever imagine. I hate having to have the stones removed. I can hardly stand to watch my son suffer with the procedure. I know you’re thinking: (can’t they just lazer them?). No, they can’t. It actually is more dangerous to lazer them, because the force it takes to break them up can damage other organs or break something. Not to mention having even more stones to pass because they blast them into several pieces. I also know you are thinking: (can’t he have a kidney transplant?). No, I looked into that day one and found out that his body produces the stones, not the kidney. So, if I gave him my kidney, his body would still produce stones and he would still have to pass them. Trust me, I would gladly do this. Even doctor Landau didn’t know how to stop Tate’s stones. He referred us to Dr. Pearle (one of the top specialists in the country). She writes books and gives speeches all over the world on kidney stones. He said,  “if she can’t help, then I don’t know who can”. We had four doctors refer us and I was surprised that I had an appointment two weeks later. She has been great, but has not seen a case like Tate’s. No one has. He is an anomaly with his hundreds of stones. This was another disappointment.

   Throughout 2018, 2019 and 2020, we still sought doctors, visited the Mayo Clinic for our gastro procedures, removed stones and passed well over 200 stones. We still had no answers. I had given up on the Mayo kidney stone clinic. What a disappointment! I love the gastro department though. They are great! Then, in 2020 on Father’s Day in the middle of a pandemic, my Aunt Linda called me early in the morning. She had to see me right away. She thinks she found the answer to Tate’s problem. I told her no need to come, just tell me what it is and I will research it. I didn’t think she held the answer because so many people think they have the answer to this or how to help. She told me she was researching Tate's symptoms and came across a rare disease called Primary Hyperoxaluria Type 1. Now, John and I have researched the internet thousands of times and have tried every kind of diet, ordered every type of pill and fed our kid all kinds of roots and plants. We have never come across this. My aunt Linda showed up at my door anyway. She told me this disease had all of Tate’s symptoms and she printed out the paperwork to get free testing. Free, now nothing in this journey has been free. She even made an appointment with Dr. Alang. She took Tate to the appointment and talked with him about this disease. Dr. Alang was intrigued enough to research this and have Tate tested. Low and behold on October 2, 2020, Tate finally had a diagnosis of PH 1 disease. Dr. Alang also found out that a new medicine was about to come out for just this particular disease. All we had to do was wait for the FDA approval of the medicine. What is PH 1 you ask? It is a rare disorder that causes massive amounts of kidney stones. One in 3 million people have it. It is a genetic disorder (we have had two genetic tests done by the way). The stones are created from the liver. Something nobody even looked at. It causes:

Blood in the urine.

Pain when you pee.

Need to pee often.

Belly pain.

Many urinary tract infections.

Blocked urinary tract.

Sudden, serious back pain.

Chills.

Fever.

Overproduction of kidney stones.

 

Tate has experienced all of this every week for four years!!!! I have always said he is stronger than any soldier. I call him Sarge.

 

     Great, we have a diagnosis and medicine that is supposed to greatly reduce the amount of stone production to little to none. The FDA approved the medication in January 2021 for consumers. So, why isn’t he on this life changing medication? The insurance company doesn’t want to pay for it. Now, Dr. Alang, along with a case manager, is fighting for Tate to have his meds. Once again, we are having to prove the severity of this disease. Did I mention how horrible doctors have treated us at the hospital almost every time we go. They don’t believe this is happening and don’t want to give him narcotics for the pain. We are treated like drug addicts and we are making this up. It is so frustrating. They will ask him “Do you work or go to school?” NO, I explain every time that he hasn’t left his bed in four years! He passes stones weekly and when I have given Tate 5 Hydrocodone and 5 Tramadol for the day, I refuse to give him any more. That’s why I need a hospital to manage the pain at that point. Again, their response is we need to do a cat scan. My response is look at his chart! It is documented how many stones are in his kidneys. Look at his other 10 cat scans. I am being responsible for not letting my son OD! When I ask what they would do, they don’t have an answer. EVER!!! We have lived this twisted nightmare, like “Groundhog’s Day” for four years. I can’t physically walk in a hospital anymore. My blood boils and I get anxious. My chest starts hurting and tears come to my eyes from anger. John and I take turns.

 

     So, now what do we do? We keep fighting and try to gather enough money for his new medications which are $6,000. I might add that I have learned a lot on this horrible journey. For one, just because you have insurance, doesn’t mean you are covered. ER doctors can charge you full price just because they don’t take your insurance. This has happened to us on many occasions. Once an anesthesiologist did not take our insurance and my bill was $3000 just for anesthesia! Just last week our son felt he had no choice, but to undergo his colon procedure for his dyssynergia at the Mayo clinic with NO anesthesia because insurance wouldn’t pay for it. This is what this is coming to. I don’t know how he did it. I begged and pleaded with him, but he felt he had no choice. Due to Covid, I had to sit in the car and could not be his voice.  Secondly, doctors can refuse to care for you just because they couldn’t be bothered and don’t want to work on an “out of the box” case. Tate’s medical bills out of our pocket are around $20,000 a year. We have paid out close to $80,000 of our own money trying to save him. This year we will reach the $100,000 mark. I am not saying this for pity. This is our child and we have taken this in stride and have handled it. What I want to do is bring awareness to this HUGE problem.  If you have a serious or chronic illness in this country, you are screwed! It is just not right. I want the laws to change. If you have insurance, you should be covered. Especially in the ER. That’s why it is called the ER. You have an emergency situation. You don’t have time to research who takes your insurance and you certainly don’t get to pick who you see there. You get whatever doctor is on call. You pay the price too. Most people don’t understand this situation. Just to walk in the ER costs us $1,200 a visit. Most people just get sick and go to the doctor, pay their co-payment and get their medications. Most people don’t visit the hospital every month and sometimes every week. Or be admitted for weeks at a time. Staying at the hospital for a week is like staying in a 5 star hotel suite without the luxuries. It costs money, even with insurance. Most people never meet their deductible in a year and if they do, they get their visits and medications for free because they are not hospitalized. They also don’t take 12 different medications a day just to survive a bed. Yes, that’s how many pills Tate takes a day. I have to manage them and make sure he takes them. Some days, he won’t take them because he can’t eat and has thrown up all day. Or, he is too nauseated from feeling sick.  He is on some heavy stuff like Hydrocondone, Tramadol, timed morphine release pills, Flo-max to help him pee, just to name a few. He has taken this daily for four years. No wonder his whole body is sick. The symptoms of this disease I listed earlier is no joke. Tate battles all of them every single week. When we finally do get the medication, I will have to fight round two with the pharmacy. Oh, they question all the medication they fill and I have to fight them too. They will call the doctor to clarify. I tell them, “We have been using your pharmacy for four years now and nothing has changed. We have had the same conversations every time”.  Tate has been flagged for all the drugs he has to take to survive his day. I understand that, but the doctors do nothing, but prescribe it. They can’t spend time looking for answers. Funny, my Aunt Linda is not a doctor and she managed to. They just want to give him his meds and get him out of their hair. Dr. Alang has stayed the course. I have thanked him for not giving up on Tate many times. If I had a million dollars, he would get it. He is the only one that has helped. As far as I see it. I feel I shouldn’t have to pay until you fix him. You wouldn’t pay for your car repair if they didn’t fix it. Dr. Alang and Dr. Fox-Orenstein are the only deserving doctors in this case. Dr. Fox-Orenstien is Tate’s gastro doctor at Mayo. She is wonderful!

 

     The magnitude of this disease has taken its toll on our family. It is like fighting the a war by ourselves and the only weapon we have is a spoon. I am so proud of our Sarge. He continues to deal with all of this and more. He still has a charming personality and a charismatic character. This disease may beat him down, but he and his family are still fighting the battle. He is STRONG!

 

     “We want to thank each and everyone of you for all your thoughts, prayers and donations.  We start our 5th year of this battle on Feb. 27th. We hope this is our last year of this nightmare. We hope we are able to get the medications for PH 1 and his stones diminish greatly. It is our last hope. I have said many times, if it weren’t for our friends, family, neighbors and co-workers, we would not survive this. We are thankful for all of you. It takes an amazing support system to manage this. Because of all of you, we are still standing.