John & Arric Esparza Kidney Fund
Donation protected
Hello, my name is Robyn Esparza, and this is my call for help.
Before I go into detail, I’d like to describe who I am. I am a wife to John. We have been married 25 years, this past September 21st. We are the parents to four grown children. We have three daughters, Amanda, Alyssa and Brianna. We also have a son, Arric (pronounced like Eric). Yes, it’s a little different spelling, but he was different. A boy, finally! I was so happy the day he was born, although 7 weeks early. I finally got my one and only baby boy. .
Although Arric was a little premature, he was so healthy until just before 2 years old. Right around that time, he started looking somewhat different. I couldn’t put my finger on it. His eyes looked different. `I would ask my husband, “Does he look different?” My husband would say, “Yeah, but he isn’t so little anymore. Maybe his face is filling out or it’s just his haircut.” But, no. I knew. A mother always knows. His face was changing. Something inside me… again a mother’s intuition… said something was amiss and I was worried. His eyes were puffy. I took him to the emergency room in the middle of a nursing strike. I was desperate. I crossed lines to find out what was wrong with our son. Needless to say, we were told to go home, nothing to worry about. Actually, I was kind of mocked to a point. The MD didn’t even examine him. He said, “He coos to Arric, oh your mother is just upset because she can’t take cute pictures of you.” He said it was allergies. Then, I take him home. I put him to bed.
A pro as a mother by now, I do everything like a conveyor belt. Get the girls homework going, getting them bathed and fed. My husband and I were watching the news if I recall that faithful night. I hear Arric crying. Of course, I don’t need a light. I walk to the crib in the dark and go to soothed him. I turn on his Pooh Bear mobile to see if he will fall back to sleep. He continues to cry. He is crying harder, a sick cry. I reach into the crib to go to pick him up. Let me tell you, this was one of the scariest moments of my life. Like I said, it was dark. No light. I bent down to pick him up. As I lifted him, I literally stumble backwards when I picked him up. You see, Arric was not the same baby I put to bed. I’m yelling and crying for my husband Johnny to come quick. Something is wrong. I know this because the son I put to bed was not the son I was picking up. I laid down an infant, probably about 18 pounds. My son I put to bed had put on a massive amount of weight in a matter of hours. Come to find out, he had put on approximately 20 pounds of fluid!
So, back to the e.r. They don’t figure it out. I take him back to the clinic in the morning. It just so happen that his regular doctor wasn’t available. We were actually seen by an endocrinologist. We had taken him numerous times to the doctors, none of whom could figure out or even indicate what was going on. They seen me as a paranoid mother. Excuse me, I raised three daughters prior to Arric without any problems. It’s not like I was a first time mother, when things can be scary because, after all, babies do not necessarily come with an instruction manual. Anyway, this doctor said she was ordering a slew of tests and that we were not to leave the clinic. She said, plan for a longer wait than normal. Even though not her expertise, she had an inkling as to what it was, but needed confirmation. Sure enough, after lab work, x-rays, etc., she let us know that she believed are son to have Nephrotic Syndrome and that she was expediting a call to the only pediatric nephrologist in the region for the hospital.
This nephrologist called me directly. He says, something along the lines of, “Mrs. Esparza, I would like you to sit down while I go over the findings. You do not know me and we are speaking over the phone, rather than in person." He preferred the opposite. He was and still is such a great physician. He proceeds to tell me that Arric has Nephrotic Syndrome and some, but not all, of the horrible things that it could do to him including, but not limited to, easily breaking bones; he could have a stroke due to extremely high blood pressure or having everything consumed turned to fat. To this point, his triglycerides at one time was over a thousand (not a typo). He had to have plasmapheresis, where they literally remove blood through filtration just to suck the fat out of the blood so he wouldn’t have a heart attack at two years old. He would put on massive amounts of fluid, stressing his heart. While hospitalized, they literally pull off 20 pounds off, only for it to appear within a day.
Nephrotic Syndrome is a double edge sword. In some cases, it dissipates after a year and none is the worse for wear This is none as Minimal Change Nephrotic Syndrome. However, there is another side to Nephrotic Syndrome and that is Focal Segmental Glomulerol Sclerosis (FSGS), which does not dissipate, but continues until the patient goes into complete kidney failure. Arric was very, very ill. He was sent to Stanford. There were so, so many doctors all with their own theories. One of the clinicians was world renown for this one particular disease. We spent almost an entire year at Stanford, sometimes in double isolation. It was so hard. At times, I felt my son was a guinea pig. They did things to him that they didn’t even know would work. There is no known definitive cause of this horrible disease and no cure. I would not wish it on my worse enemy even if I had one.
These were trying times. My husband took time off work. I took time off work. Our daughters’ lives were in chaos. Where is mom, dad and their little brother? They didn’t understand. We literally lived in the hospital(s). It was very trying. We would beg clinicians. Please it’s Christmas, let us go home. We actually got a pass one Christmas Eve, only to end up back in the hospital less than 12 hours later. They would do kidney biopsies to see how much scarring to his kidney the disease had caused. That’s the thing with the disease. Someone inflicted with it spills massive amounts of protein through their urine, causing holes in their kidneys until they shrivel up and stop functioning. He had a few biopsies. They kept coming back that it wasn’t FSGS (Focal Segmental Glomulerol Sclerosis), indicating Minimal Change Disease.
The clinicians knew this wasn’t the case. Clinically, due to Arric frail health, they knew it had to be FSGS, but the biopsies showed no scarring. This is due to the fact that, when taking a biopsy of the kidney, just small slices are taken. It is a hit and miss. A needle in a haystack so to speak. Until one biopsy did, in fact, show the worse of two evils. It was, in fact, FSGS and not Minimal Change. This was devastating news. We now knew his kidneys would eventually fail. However, I felt blessed because someone in Arric’s condition shouldn’t have lasted as long as he did. In fact, when just a 2-year-old boy, Stanford didn’t want to wait or waste any more money or time. They wanted the kidneys to be removed. He was too sick, why prolong it, why waste the money. I’m sure his health was paramount in their minds; however, the cost to hospitalize him was astronomical. For his stay at Stanford, we had receipts upwards of $2 million!
However, the nephrologist who initially diagnosed him came to us and said that he didn’t want Arric’s kidneys to be removed and that he had some hope to prolong it. He let us choose. Go with Stanford’s decision to remove the kidneys or go with his plan. It was a scary decision, to say the least. But, we did it. I felt the compassion of this man and knew that he would do whatever it took to prolong the loss of Arric’s kidneys. I didn’t want my baby to be on dialysis.
Arric spent more time in the hospital than at home, which meant time away from our girls. He wasn’t able to go to school because he would constantly get sick from the immunosuppressants. He was actually taking anti-rejection drugs, which one would receive only after a kidney transplant, even though he still had his own kidneys. It was an experiment. A simple cold for us was life threatening to someone on immunosuppressants, because they do just that. They weaken the immune system. At one point, they knew Arric was sicker than sick, but couldn’t find out why. We, as parents, trying to bring a child normal happiness, took him to a child’s indoor playground. He ended up with Mono. They kept on testing him, but the drugs were masking the illness. By all accounts, Arric should not have survived this. In fact, Arric should not have survived numerous times.
Arric has been on so many of these cancer-causing therapies, he will never have children of his own, which was hard to come to grips with. I initially denied treatment on one of the last drugs, because how could I not look into the future of my son and not see a little piece of him in his own child that he could never have due to these awful drugs. I finally gave in because I wanted him to live. He can adopt, right? He would go three times a week to a pediatric chemo unit to get infusions over the years. When he wasn’t in a clinic, he was in one hospital or another. He has spent so much time in the hospital over the years, many times in ICU. In order to survive, we spent our life savings, our retirements four times over.
As he got older around 13 or so, he was thought to be in a remission, but wasn’t. Clinicians were baffled by him. He surely should have lost his kidney function by now. He should have had cataracts from all the massive steroids he got throughout his life. We cruised along for a while, having flare ups and landing him in and out of the hospital most of the time with pneumonia because the fluid would build up to the point where it look like his gut would split and then seep into his lungs. As a teenager, it got harder and harder to get Arric to stay on the massive amounts of steroids and many other medications. He was so angry all the time.
He had a hard life thus far to say the least. He had two looks. The puffy Arric (my little marshmallow) and the thinner version. He had to grow up with stares. I understand the curious stares from children as they do not know better. However, when adults stared, it would irk me to no end. Like, didn’t your parents ever teach you not to stare? During this time, it was a back and forth thing. Get sick, go to the hospital, come home and start all over. Then, we were blessed with somewhat of a break. At least it wasn’t constant hospitals. I believe in the power prayer and believe it was all the prayers we received from loved ones and ones we didn’t know, but loved for their prayers.
I now need to bring my husband, John, into the picture. John had been diabetic for quite some time. He probably got diabetes in his 20’s. Me, being the nagging wife, would always be on him. You need to take care of yourself. I can’t do this life by myself. I couldn’t picture facing Arric’s disease alone. John was my rock. Everything would roll off him. I used to be a lot stronger back then. I wasn’t beat down as I am now. The years took a toll on John. I took him to his doctor appointments, nagged him about taking his insulin and other medications. As years went on, I was following his lab work. It was me, who inquired about his kidney function. It was me who hounded the doctor. Like, these labs aren’t normal. After all, I knew all about lab work by this time as I had learned through Arric’s kidney disease.
Yup, you guessed it, John’s kidneys were failing. I would tell myself, as well as John, that this can’t be happening. John went downhill pretty fast. It took about a year and was in kidney failure due to diabetes. He has been on a dialysis for the last year. At the same time as John’s kidney failure, Arric started getting sick, again. I fought with his new nephrologist. Do the old regimen. Give him the steroids. I fought and fought. She finally caved and gave him three treatments to pacify me. It worked! Arric’s kidneys bounced back. However, it was short lived. His kidneys were failing at an exponential rate. I’m like do the treatment again. I wanted so much for him to experience a normal summer. He was going to turn the big 21! They declined. They said it was useless. I put everything I had into the fight. I was so angry with her. How dare she take away my faith, my hope!
They offered a new therapy for Arric. One with consequences that I could not and would not accept. It would just be another experiment. A guinea pig again. The treatment had the possibility of causing a brain bug and killing him. Needless to say, I declined. Arric had already been a guinea pig too much of his life. I wasn’t going to stand by and cross my fingers and pray that he would not get the brain bug. It’s actually a cancer drug for those in the last throws of their fight to beat cancer without a guarantee. Try this drug to see if it works or you die. Go ahead and roll the dice.
Even though now an adult, I went to Arric’s pediatric nephrologist, who I still respected so much. After all, he kept Arric’s kidneys in his body for 18 years. He should have went into kidney failure so much younger. I told him please tell them it’s ok for him to go back to his old treatment. The protocols you developed. His answer was no. In fact, he said that if Arric was his child, he would not pump any more drugs into Arric and that we should expect for Arric to decline rapidly. And, so it was, Arric went into rapid kidney failure and is now on dialysis as well.
After 25 years of marriage and raising my family, I thought we would be celebrating. You know, taking a family trip. However, my worst fears have come to pass, both my husband and son need a kidney transplant to save their lives. I have been off work three months. My FMLA is up. In the midst of these three months, it has been never ending hospital stays, clinic visits. If not for John, then for Arric. Some times with me trying to split myself to be in both places at one time. My husband actually had a heart attack and, apparently, a stroke, which we didn’t know about until the heart attack. He didn’t even know he was having a heart attack because of the nerve damage in his stomach caused by the diabetes. He had a 90% block of the LAD. They call it the “widow maker.” If I didn’t have the where with all to drag him to the hospital, I would be a widow.
John is awaiting a kidney transplant. He is listed with UC Davis. We chose UC Davis because it has a shorter waiting period for cadaver transplant. Currently, the wait time is 4 - 6 years. It is a two hour drive away for appointments, but way better than going through the wait time of UCSF which has an 8 - 10 year wait time for a kidney. Currently, there are over 6,000 patients on the waiting for the San Francisco Bay Area.
Arric, on the other hand, is listed with UCSF, but not by choice. His doctor, without having common sense to think, well his dad is listed with UC Davis, Arric should also be sent to UC Davis. His provider said she referred him to UCSF instead, because we might have a possible living donor. His sister wanted to be tested to see if she was a match to donate her kidney to save Arric’s life. A couple months prior and it was her stepping up and offering one of her kidney’s for her father. However, it declined, knowing that Arric, at some point would need a life saving kidney. We just didn’t expect it to be within months of her father going into kidney failure. Anyway, the referring provider thought it was a shorter commute. Not really, it’s 45 miles away, but can take two hours to get there with the crazy Bay Area traffic. In addition, the referring provider indicated that there was a provider at UCSF that specializes in Arric’s disease. Wrong, that provider has since retired. It should be noted that with Arric’s disease, because it is an autoimmune disease, there is a probability that the kidney disease will return at some point and attack the transplanted kidney.
His sister Alyssa was tested and we were initially told that she was a match. Then, rather abruptly told no. As it ironically turns out, she has a very tiny kidney stone, which is preventing her from donating even though she will probably never ever pass the stone. In fact, we were initially told even though she had the stone, it would not be a problem because they would remove the stone and transplant that kidney into Arric. So, we went from hopeful to heartbroken. I am very proud of Alyssa for taking the unselfish steps to help save her brother’s life. So, the search must go on.
Both my husband and son are O positive. Type O blood is universal. One with type O blood can donate to any other blood types to save a life; however, they can only receive type O blood/organs. So, here I sit, spilling out my guts in hopes this reaches some eyes, some hearts who have the opportunity to save lives. If you haven’t already considered it, please do so now. Give the gift of life. Please register to be a donor. If not for my family, then someone else’s, who are also waiting for the Gift of Life to be donated. One can live a healthy life with just one kidney; however, my husband and son cannot.
I wish kidneys grew on trees. I know there are innovations in the future, where a device will be able to be implanted into one that needs a kidney. However, until then, give the gift the life.
My niece suggested I start a GoFundMe account. I’m like I can’t do that. I guess it’s my pride. Like, I’m sticking my hand out, asking complete strangers to donate to a complete stranger. But, in reality, I need to put my pride aside for survival. We live in Silicon Valley, a very expensive place to live. We pay $3850.00 to rent a home. Yes, rent. That is not a mortgage. I’ve exhausted my six weeks of Paid Family Leave, all the while having to pay for my medical benefits coverage because without that I would not have benefits to pay for transplants. In fact, according to the transplant obligation, I must maintain my health coverage. If not, no coverage, then no transplant. Now at the end of Paid Family Leave and if I don’t return to work by October 6th, I have to pay for COBRA, an expensive cost. I have no income. I'm going to try and go back to work, but it will be challenging due to the numerous amounts of appointments. My work is being understanding, but they have their limits.
Like everyone else, we have utilities to pay. Please note our PG&E is through the roof due to the dialysis done at home. Our current due is around $1,800. Maybe this month it may be less, as my husband has had to start hemodialysis due to declining health, which requires going to a treatment facility 3 days a week. We have other usual expenses: cell phone bill (essential for when we ever get the call that there is a kidney match) water, car payment, insurance, food, gas for all the back and forth to appointments, medical copayments, not to mention the cost of medications, etc.
I’m also in need of purchasing a scooter for John as he has a tendency of passing out. One minute he is standing, the next he is not. We have a wheelchair; however, it can be quite hard to maneuver him around. I am currently looking for used one. We got a recliner donated to us. Sadly, my brother recently passed and now we have his. I’m also looking to trade our vehicle for a crossover, which will provide space for wheelchair and/or scooter. Plus, it's kind of hard now for John to get in and out of the lower vehicle. I sold my Arcardia to save gas; now, we need more room. We purchased a 2016 Hyundai with the thought that we need a gas saver to go from San Jose to Sacramento and or San Francisco numerous times. Since that time and multiple hospitalizations later, John was directed to use a wheelchair due to the passing out problem. I’m hoping to get social security for my son, but it is a lengthy process and have been informed by SSA that it could take in excess of 6 months.
If we do receive a call for transplant, we will need to be living close to the hospital(s) and will need room and lodging, etc. It has crossed mind to relocate. But, where? I’m smack dab in the middle of the two transplant hospitals, UC Davis and UCSF. I'm thinking north. John's parents live in South Sac. We can no longer afford to live here. I believe we will more than likely be evicted as rent is upon us and have nothing. Silicon Valley is crazy expensive. I wanted to transfer Arric to UC Davis; however, I was informed we are allowed one referral for transplant. I would have to pay $1,700 out of pocket for him to go to the same hospital as his dad, where he should have been sent in the first place. Why would I want to wait 8 to 10 years, instead of 4 to 6 years for a kidney! Doctors are obviously very intelligent. But, in this case, I feel like the common sense went out the window. Arric should have been sent to UC Davis since that’s where his dad had already begun his journey for a transplant.
If you have the means, no matter how little, and would like to help my family out and contribute financially, please donate. It would be greatly appreciated. I am a proud woman and it has taken me three months to write this up. I kept telling myself: This is my family and my responsibility and that this is my life and the hand that I was dealt and that I just have to deal with it. I keep telling myself I should have been a nurse or dialysis tech, because that’s what I seem to be doing providing care for half my life, whether for my mother, who has been gone for 13 years now. She passed due to kidney failure from diabetes as well as other comorbidities.
I’ve come to realize sometimes you need to put your pride aside and just ask for help. I’m due to return to work, but honestly worry how I will keep my job. I see my future as a caregiver. When you marry, it’s in sickness and health and till death do you part. I never thought I would be taking care of my husband at such a young age. We all get old and get ailments and it’s time to take care of each other. But, I can honestly say that I am broken. People tell me to go to counseling or to relax. I have no time left for me for counseling. Maybe, if there were 48 hours in a day, rather than 24, I might be able to get some of that in to take care of myself. But, my main focus is on saving my husband and son, as it should be.
Thank you in advance for your time and consideration. Please feel free to share our story.
With heartfelt appreciation,
Robyn Esparza
Please email me at [email redacted]com for information if interested in donating a kidney. Medical Expenses are paid by patient’s (our) medical coverage. You can start with a simple on line questionnaire through either hospital where John and Arric are in their database.
Remember, you can live one kidney but my husband/son cannot.
Before I go into detail, I’d like to describe who I am. I am a wife to John. We have been married 25 years, this past September 21st. We are the parents to four grown children. We have three daughters, Amanda, Alyssa and Brianna. We also have a son, Arric (pronounced like Eric). Yes, it’s a little different spelling, but he was different. A boy, finally! I was so happy the day he was born, although 7 weeks early. I finally got my one and only baby boy. .
Although Arric was a little premature, he was so healthy until just before 2 years old. Right around that time, he started looking somewhat different. I couldn’t put my finger on it. His eyes looked different. `I would ask my husband, “Does he look different?” My husband would say, “Yeah, but he isn’t so little anymore. Maybe his face is filling out or it’s just his haircut.” But, no. I knew. A mother always knows. His face was changing. Something inside me… again a mother’s intuition… said something was amiss and I was worried. His eyes were puffy. I took him to the emergency room in the middle of a nursing strike. I was desperate. I crossed lines to find out what was wrong with our son. Needless to say, we were told to go home, nothing to worry about. Actually, I was kind of mocked to a point. The MD didn’t even examine him. He said, “He coos to Arric, oh your mother is just upset because she can’t take cute pictures of you.” He said it was allergies. Then, I take him home. I put him to bed.
A pro as a mother by now, I do everything like a conveyor belt. Get the girls homework going, getting them bathed and fed. My husband and I were watching the news if I recall that faithful night. I hear Arric crying. Of course, I don’t need a light. I walk to the crib in the dark and go to soothed him. I turn on his Pooh Bear mobile to see if he will fall back to sleep. He continues to cry. He is crying harder, a sick cry. I reach into the crib to go to pick him up. Let me tell you, this was one of the scariest moments of my life. Like I said, it was dark. No light. I bent down to pick him up. As I lifted him, I literally stumble backwards when I picked him up. You see, Arric was not the same baby I put to bed. I’m yelling and crying for my husband Johnny to come quick. Something is wrong. I know this because the son I put to bed was not the son I was picking up. I laid down an infant, probably about 18 pounds. My son I put to bed had put on a massive amount of weight in a matter of hours. Come to find out, he had put on approximately 20 pounds of fluid!
So, back to the e.r. They don’t figure it out. I take him back to the clinic in the morning. It just so happen that his regular doctor wasn’t available. We were actually seen by an endocrinologist. We had taken him numerous times to the doctors, none of whom could figure out or even indicate what was going on. They seen me as a paranoid mother. Excuse me, I raised three daughters prior to Arric without any problems. It’s not like I was a first time mother, when things can be scary because, after all, babies do not necessarily come with an instruction manual. Anyway, this doctor said she was ordering a slew of tests and that we were not to leave the clinic. She said, plan for a longer wait than normal. Even though not her expertise, she had an inkling as to what it was, but needed confirmation. Sure enough, after lab work, x-rays, etc., she let us know that she believed are son to have Nephrotic Syndrome and that she was expediting a call to the only pediatric nephrologist in the region for the hospital.
This nephrologist called me directly. He says, something along the lines of, “Mrs. Esparza, I would like you to sit down while I go over the findings. You do not know me and we are speaking over the phone, rather than in person." He preferred the opposite. He was and still is such a great physician. He proceeds to tell me that Arric has Nephrotic Syndrome and some, but not all, of the horrible things that it could do to him including, but not limited to, easily breaking bones; he could have a stroke due to extremely high blood pressure or having everything consumed turned to fat. To this point, his triglycerides at one time was over a thousand (not a typo). He had to have plasmapheresis, where they literally remove blood through filtration just to suck the fat out of the blood so he wouldn’t have a heart attack at two years old. He would put on massive amounts of fluid, stressing his heart. While hospitalized, they literally pull off 20 pounds off, only for it to appear within a day.
Nephrotic Syndrome is a double edge sword. In some cases, it dissipates after a year and none is the worse for wear This is none as Minimal Change Nephrotic Syndrome. However, there is another side to Nephrotic Syndrome and that is Focal Segmental Glomulerol Sclerosis (FSGS), which does not dissipate, but continues until the patient goes into complete kidney failure. Arric was very, very ill. He was sent to Stanford. There were so, so many doctors all with their own theories. One of the clinicians was world renown for this one particular disease. We spent almost an entire year at Stanford, sometimes in double isolation. It was so hard. At times, I felt my son was a guinea pig. They did things to him that they didn’t even know would work. There is no known definitive cause of this horrible disease and no cure. I would not wish it on my worse enemy even if I had one.
These were trying times. My husband took time off work. I took time off work. Our daughters’ lives were in chaos. Where is mom, dad and their little brother? They didn’t understand. We literally lived in the hospital(s). It was very trying. We would beg clinicians. Please it’s Christmas, let us go home. We actually got a pass one Christmas Eve, only to end up back in the hospital less than 12 hours later. They would do kidney biopsies to see how much scarring to his kidney the disease had caused. That’s the thing with the disease. Someone inflicted with it spills massive amounts of protein through their urine, causing holes in their kidneys until they shrivel up and stop functioning. He had a few biopsies. They kept coming back that it wasn’t FSGS (Focal Segmental Glomulerol Sclerosis), indicating Minimal Change Disease.
The clinicians knew this wasn’t the case. Clinically, due to Arric frail health, they knew it had to be FSGS, but the biopsies showed no scarring. This is due to the fact that, when taking a biopsy of the kidney, just small slices are taken. It is a hit and miss. A needle in a haystack so to speak. Until one biopsy did, in fact, show the worse of two evils. It was, in fact, FSGS and not Minimal Change. This was devastating news. We now knew his kidneys would eventually fail. However, I felt blessed because someone in Arric’s condition shouldn’t have lasted as long as he did. In fact, when just a 2-year-old boy, Stanford didn’t want to wait or waste any more money or time. They wanted the kidneys to be removed. He was too sick, why prolong it, why waste the money. I’m sure his health was paramount in their minds; however, the cost to hospitalize him was astronomical. For his stay at Stanford, we had receipts upwards of $2 million!
However, the nephrologist who initially diagnosed him came to us and said that he didn’t want Arric’s kidneys to be removed and that he had some hope to prolong it. He let us choose. Go with Stanford’s decision to remove the kidneys or go with his plan. It was a scary decision, to say the least. But, we did it. I felt the compassion of this man and knew that he would do whatever it took to prolong the loss of Arric’s kidneys. I didn’t want my baby to be on dialysis.
Arric spent more time in the hospital than at home, which meant time away from our girls. He wasn’t able to go to school because he would constantly get sick from the immunosuppressants. He was actually taking anti-rejection drugs, which one would receive only after a kidney transplant, even though he still had his own kidneys. It was an experiment. A simple cold for us was life threatening to someone on immunosuppressants, because they do just that. They weaken the immune system. At one point, they knew Arric was sicker than sick, but couldn’t find out why. We, as parents, trying to bring a child normal happiness, took him to a child’s indoor playground. He ended up with Mono. They kept on testing him, but the drugs were masking the illness. By all accounts, Arric should not have survived this. In fact, Arric should not have survived numerous times.
Arric has been on so many of these cancer-causing therapies, he will never have children of his own, which was hard to come to grips with. I initially denied treatment on one of the last drugs, because how could I not look into the future of my son and not see a little piece of him in his own child that he could never have due to these awful drugs. I finally gave in because I wanted him to live. He can adopt, right? He would go three times a week to a pediatric chemo unit to get infusions over the years. When he wasn’t in a clinic, he was in one hospital or another. He has spent so much time in the hospital over the years, many times in ICU. In order to survive, we spent our life savings, our retirements four times over.
As he got older around 13 or so, he was thought to be in a remission, but wasn’t. Clinicians were baffled by him. He surely should have lost his kidney function by now. He should have had cataracts from all the massive steroids he got throughout his life. We cruised along for a while, having flare ups and landing him in and out of the hospital most of the time with pneumonia because the fluid would build up to the point where it look like his gut would split and then seep into his lungs. As a teenager, it got harder and harder to get Arric to stay on the massive amounts of steroids and many other medications. He was so angry all the time.
He had a hard life thus far to say the least. He had two looks. The puffy Arric (my little marshmallow) and the thinner version. He had to grow up with stares. I understand the curious stares from children as they do not know better. However, when adults stared, it would irk me to no end. Like, didn’t your parents ever teach you not to stare? During this time, it was a back and forth thing. Get sick, go to the hospital, come home and start all over. Then, we were blessed with somewhat of a break. At least it wasn’t constant hospitals. I believe in the power prayer and believe it was all the prayers we received from loved ones and ones we didn’t know, but loved for their prayers.
I now need to bring my husband, John, into the picture. John had been diabetic for quite some time. He probably got diabetes in his 20’s. Me, being the nagging wife, would always be on him. You need to take care of yourself. I can’t do this life by myself. I couldn’t picture facing Arric’s disease alone. John was my rock. Everything would roll off him. I used to be a lot stronger back then. I wasn’t beat down as I am now. The years took a toll on John. I took him to his doctor appointments, nagged him about taking his insulin and other medications. As years went on, I was following his lab work. It was me, who inquired about his kidney function. It was me who hounded the doctor. Like, these labs aren’t normal. After all, I knew all about lab work by this time as I had learned through Arric’s kidney disease.
Yup, you guessed it, John’s kidneys were failing. I would tell myself, as well as John, that this can’t be happening. John went downhill pretty fast. It took about a year and was in kidney failure due to diabetes. He has been on a dialysis for the last year. At the same time as John’s kidney failure, Arric started getting sick, again. I fought with his new nephrologist. Do the old regimen. Give him the steroids. I fought and fought. She finally caved and gave him three treatments to pacify me. It worked! Arric’s kidneys bounced back. However, it was short lived. His kidneys were failing at an exponential rate. I’m like do the treatment again. I wanted so much for him to experience a normal summer. He was going to turn the big 21! They declined. They said it was useless. I put everything I had into the fight. I was so angry with her. How dare she take away my faith, my hope!
They offered a new therapy for Arric. One with consequences that I could not and would not accept. It would just be another experiment. A guinea pig again. The treatment had the possibility of causing a brain bug and killing him. Needless to say, I declined. Arric had already been a guinea pig too much of his life. I wasn’t going to stand by and cross my fingers and pray that he would not get the brain bug. It’s actually a cancer drug for those in the last throws of their fight to beat cancer without a guarantee. Try this drug to see if it works or you die. Go ahead and roll the dice.
Even though now an adult, I went to Arric’s pediatric nephrologist, who I still respected so much. After all, he kept Arric’s kidneys in his body for 18 years. He should have went into kidney failure so much younger. I told him please tell them it’s ok for him to go back to his old treatment. The protocols you developed. His answer was no. In fact, he said that if Arric was his child, he would not pump any more drugs into Arric and that we should expect for Arric to decline rapidly. And, so it was, Arric went into rapid kidney failure and is now on dialysis as well.
After 25 years of marriage and raising my family, I thought we would be celebrating. You know, taking a family trip. However, my worst fears have come to pass, both my husband and son need a kidney transplant to save their lives. I have been off work three months. My FMLA is up. In the midst of these three months, it has been never ending hospital stays, clinic visits. If not for John, then for Arric. Some times with me trying to split myself to be in both places at one time. My husband actually had a heart attack and, apparently, a stroke, which we didn’t know about until the heart attack. He didn’t even know he was having a heart attack because of the nerve damage in his stomach caused by the diabetes. He had a 90% block of the LAD. They call it the “widow maker.” If I didn’t have the where with all to drag him to the hospital, I would be a widow.
John is awaiting a kidney transplant. He is listed with UC Davis. We chose UC Davis because it has a shorter waiting period for cadaver transplant. Currently, the wait time is 4 - 6 years. It is a two hour drive away for appointments, but way better than going through the wait time of UCSF which has an 8 - 10 year wait time for a kidney. Currently, there are over 6,000 patients on the waiting for the San Francisco Bay Area.
Arric, on the other hand, is listed with UCSF, but not by choice. His doctor, without having common sense to think, well his dad is listed with UC Davis, Arric should also be sent to UC Davis. His provider said she referred him to UCSF instead, because we might have a possible living donor. His sister wanted to be tested to see if she was a match to donate her kidney to save Arric’s life. A couple months prior and it was her stepping up and offering one of her kidney’s for her father. However, it declined, knowing that Arric, at some point would need a life saving kidney. We just didn’t expect it to be within months of her father going into kidney failure. Anyway, the referring provider thought it was a shorter commute. Not really, it’s 45 miles away, but can take two hours to get there with the crazy Bay Area traffic. In addition, the referring provider indicated that there was a provider at UCSF that specializes in Arric’s disease. Wrong, that provider has since retired. It should be noted that with Arric’s disease, because it is an autoimmune disease, there is a probability that the kidney disease will return at some point and attack the transplanted kidney.
His sister Alyssa was tested and we were initially told that she was a match. Then, rather abruptly told no. As it ironically turns out, she has a very tiny kidney stone, which is preventing her from donating even though she will probably never ever pass the stone. In fact, we were initially told even though she had the stone, it would not be a problem because they would remove the stone and transplant that kidney into Arric. So, we went from hopeful to heartbroken. I am very proud of Alyssa for taking the unselfish steps to help save her brother’s life. So, the search must go on.
Both my husband and son are O positive. Type O blood is universal. One with type O blood can donate to any other blood types to save a life; however, they can only receive type O blood/organs. So, here I sit, spilling out my guts in hopes this reaches some eyes, some hearts who have the opportunity to save lives. If you haven’t already considered it, please do so now. Give the gift of life. Please register to be a donor. If not for my family, then someone else’s, who are also waiting for the Gift of Life to be donated. One can live a healthy life with just one kidney; however, my husband and son cannot.
I wish kidneys grew on trees. I know there are innovations in the future, where a device will be able to be implanted into one that needs a kidney. However, until then, give the gift the life.
My niece suggested I start a GoFundMe account. I’m like I can’t do that. I guess it’s my pride. Like, I’m sticking my hand out, asking complete strangers to donate to a complete stranger. But, in reality, I need to put my pride aside for survival. We live in Silicon Valley, a very expensive place to live. We pay $3850.00 to rent a home. Yes, rent. That is not a mortgage. I’ve exhausted my six weeks of Paid Family Leave, all the while having to pay for my medical benefits coverage because without that I would not have benefits to pay for transplants. In fact, according to the transplant obligation, I must maintain my health coverage. If not, no coverage, then no transplant. Now at the end of Paid Family Leave and if I don’t return to work by October 6th, I have to pay for COBRA, an expensive cost. I have no income. I'm going to try and go back to work, but it will be challenging due to the numerous amounts of appointments. My work is being understanding, but they have their limits.
Like everyone else, we have utilities to pay. Please note our PG&E is through the roof due to the dialysis done at home. Our current due is around $1,800. Maybe this month it may be less, as my husband has had to start hemodialysis due to declining health, which requires going to a treatment facility 3 days a week. We have other usual expenses: cell phone bill (essential for when we ever get the call that there is a kidney match) water, car payment, insurance, food, gas for all the back and forth to appointments, medical copayments, not to mention the cost of medications, etc.
I’m also in need of purchasing a scooter for John as he has a tendency of passing out. One minute he is standing, the next he is not. We have a wheelchair; however, it can be quite hard to maneuver him around. I am currently looking for used one. We got a recliner donated to us. Sadly, my brother recently passed and now we have his. I’m also looking to trade our vehicle for a crossover, which will provide space for wheelchair and/or scooter. Plus, it's kind of hard now for John to get in and out of the lower vehicle. I sold my Arcardia to save gas; now, we need more room. We purchased a 2016 Hyundai with the thought that we need a gas saver to go from San Jose to Sacramento and or San Francisco numerous times. Since that time and multiple hospitalizations later, John was directed to use a wheelchair due to the passing out problem. I’m hoping to get social security for my son, but it is a lengthy process and have been informed by SSA that it could take in excess of 6 months.
If we do receive a call for transplant, we will need to be living close to the hospital(s) and will need room and lodging, etc. It has crossed mind to relocate. But, where? I’m smack dab in the middle of the two transplant hospitals, UC Davis and UCSF. I'm thinking north. John's parents live in South Sac. We can no longer afford to live here. I believe we will more than likely be evicted as rent is upon us and have nothing. Silicon Valley is crazy expensive. I wanted to transfer Arric to UC Davis; however, I was informed we are allowed one referral for transplant. I would have to pay $1,700 out of pocket for him to go to the same hospital as his dad, where he should have been sent in the first place. Why would I want to wait 8 to 10 years, instead of 4 to 6 years for a kidney! Doctors are obviously very intelligent. But, in this case, I feel like the common sense went out the window. Arric should have been sent to UC Davis since that’s where his dad had already begun his journey for a transplant.
If you have the means, no matter how little, and would like to help my family out and contribute financially, please donate. It would be greatly appreciated. I am a proud woman and it has taken me three months to write this up. I kept telling myself: This is my family and my responsibility and that this is my life and the hand that I was dealt and that I just have to deal with it. I keep telling myself I should have been a nurse or dialysis tech, because that’s what I seem to be doing providing care for half my life, whether for my mother, who has been gone for 13 years now. She passed due to kidney failure from diabetes as well as other comorbidities.
I’ve come to realize sometimes you need to put your pride aside and just ask for help. I’m due to return to work, but honestly worry how I will keep my job. I see my future as a caregiver. When you marry, it’s in sickness and health and till death do you part. I never thought I would be taking care of my husband at such a young age. We all get old and get ailments and it’s time to take care of each other. But, I can honestly say that I am broken. People tell me to go to counseling or to relax. I have no time left for me for counseling. Maybe, if there were 48 hours in a day, rather than 24, I might be able to get some of that in to take care of myself. But, my main focus is on saving my husband and son, as it should be.
Thank you in advance for your time and consideration. Please feel free to share our story.
With heartfelt appreciation,
Robyn Esparza
Please email me at [email redacted]com for information if interested in donating a kidney. Medical Expenses are paid by patient’s (our) medical coverage. You can start with a simple on line questionnaire through either hospital where John and Arric are in their database.
Remember, you can live one kidney but my husband/son cannot.
Organizer
Robyn Esparza
Organizer
San Jose, CA