(1/7) “You May Need A Transplant”
“In my mid-twenties I had not been feeling well. I went to the doctor, who after some blood tests, told me that I was very anemic. While this is pretty common in women, I was so anemic that he wanted me to get a blood transfusion.
When I entered the hospital they did a battery of tests before the transfusion. One of the tests they ran was to monitor my kidney functioning, the result being that it wasn’t where it should be.
I started to see a nephrologist to learn more about what was going on. I had more bloodwork done, which confirmed that I had an elevated creatinine level, followed by a biopsy of my kidneys. At that time I was told there was some kidney damage but that it was not too severe and that over time we would see if it would stay the same, improve or worsen. They told me then, that if it continued to go up as I got older, one day I might need a kidney transplant.
When I was first told this information, I was very upset, but also felt like it would never come to that point. Yes, I felt a little under the weather, but I never felt so sick that I would one day need a kidney transplant. With routine checkups once a year, I felt that I had things under control and that I would be ok. I even went on a date the same day I went to the hospital to have a kidney biopsy done. It seemed vague and far away.
The years went on and at one point the creatinine level got a bit higher, and my doctor suggested that maybe by the time I was in my forties I would need a transplant. He also mentioned, that one day when I wanted to start a family, I would likely be considered a high-risk pregnancy. It was a lot to take in, but I was not in a relationship yet, so I didn’t feel that it would stop my life in any way. It did not feel real.
Fast forward, I met my husband Sam in the summer of 2014, after being in the dating world for many years. My medical issues did not affect my life at all, and so they were not on my radar. I did not feel like I was living with kidney disease on a regular basis. Once a year I would go for a check-up, and so in our planning our future life together, it was a non-issue.
We got married in January 2015, and in March I led a mission to Israel. I was on birth control at that point. My husband and I were working in different cities, and neither of us were able to leave our jobs in the middle of the academic year. We were living in different cities during the week and spent our weekends together. As we were commuting back and forth, we had decided we would wait to start our family.
I left for the trip and then six weeks later, on Erev Pesach, I developed a terrible pain in my right foot, a pain that was so bad I was walking on my toes. I did not know what it was, and I did not think to go to a doctor Erev Pesach. By the end of Yom Tov, I could not walk. I went to the emergency room, and they did an ultrasound of my leg and discovered that I had a blood clot. Thank God, it was below my knee and caught in time to not be fatal.
Exactly one year later, I went on another international trip, and had the same pain; this time, in my left leg. I immediately had the sense to go back home and go to the doctor who then confirmed I had another blood clot. At that point, I learned that it was likely the oral birth control causing my blood clots. We had not realized that could be a possible side effect.
They did more tests to find out why I was clotting, and they discovered that now my creatinine level was even higher.
It was 2016, and we realized that we needed to take my kidney disease more seriously.”
(2/7) “Unexpected Outcomes”
“Kidney disease can affect anyone, but it is certainly rarer amongst young people, so I struggled to find a doctor that was a good fit for me. I found a doctor at Cornell who specialized in working with women in their childbearing years. I was trying to get my kidney disease under control because we wanted to start a family.
I had found one high-risk OBGYN who was willing to work with me when no one else would because they thought it was far too dangerous. Other doctors warned me that if I got pregnant, I could end up needing a transplant in the middle of the pregnancy. We heeded their advice and found a nephrologist who has cared for me for the last two years and has truly been a lifesaver.
She did not think I needed a transplant yet. In early 2017 we were told that I could attempt to carry a pregnancy, but it was recommended that I should not. She gave me a few options, I could wait until after I had a transplant, I could consider adoption, or I could consider surrogacy.
I lost it. I was devastated. I did not know of anyone who had ever taken the surrogacy option before. It seemed crazy to me. I knew I could do it on my own. I felt fine. I had no side effects of kidney disease. I was never on dialysis. I never took medication for it. I wanted the chance to carry my own baby.
Eventually, Sam and I decided that we would put having children on our own on hold, and that we would freeze our eggs and embryos. We did two rounds of IVF to freeze embryos with the options of surrogacy and or being healthy enough on my own to carry a baby. Our insurance did not cover any of our IVF treatments, it was a really taxing experience on many levels. But we knew that this was the safest way to ensure our having a family and preserving my health.
The IVF treatment that we did to prepare the embryos caused my creatinine levels to skyrocket. We were not prepared for that side effect. At that point, my doctors told me I would likely need the transplant within a year, by summer 2018. In October, just three months later, I went back for a check up and was informed that it was time. I needed a kidney transplant, and I needed it soon.”
(3/7) “Are We A Match?”
“When they told me that it was time for a transplant, I had a hard time understanding. This wasn’t the plan. I was still young, they originally told me I had a long time until I would need a transplant. I had just gone through the emotional experience of IVF and wasn’t emotionally prepared to have a transplant in my mid-thirties. The doctors confirmed everything and told me I only had a few months, that I needed it done at the latest by February 2018. My whole world flipped upside down.
I had been hoping that I could get it done in the summer. No one would have to know about it. I am a principal in a school, and the kids would be out of class. I would not have to miss work. I could recover and go on with my life, without any issues.
When I began registering with the hospital for my transplant, the first thing I was asked was, ‘Do you have any siblings?’ A sibling is often a good match because we would have the most shared DNA. After that, you have your parents as another potential match, depending on how old they are and the state of their health. Before we asked my siblings, who are all also in their childbearing years, my mother asked if she could be a potential donor.
My mother was in her late 50’s at that point, and she was told because she was young and in good health, she could ‘absolutely’ be tested to become a donor for me. Studies have shown that the best match, is actually the mother to the child, which is incredible. My mom got tested. She kept testing and testing and testing. Eventually, she passed all of the tests.
While my mom was going through the testing process, they told us that if for some reason she would not be a match for me in the end with the final tests, we needed to find a backup donor. We could not be caught at a late stage before the surgery and have everything fall through without a Plan B.
My husband and I sent an email to around 60 people, that we felt comfortable asking if they would consider getting tested. Out of that 60, everyone responded with an outpouring of love. Immediately, ten people offered to get tested and did. Five of them were a potential match.
When there is a fully approved match, the potential donor is called with the results. When the donor knows the recipient, they are given the option to call the recipient and inform them that they are choosing to go forward with the donation.
In the end, it was my mom that called me with the news that she was my match.
I always knew it would be her.”
(4/7) “The Moment We Were Waiting For”
“The date of my surgery was Thursday, February 22, 2018.
One of the things that I worried about, was the fact that I work in a school with kids. I was having a major surgery, and I felt I needed to explain to my students what was going on and that I was going to be ok. I was going to be back in eight to twelve weeks.
I had been in close talks sharing my progress with the administration and the colleagues I work most closely with as the time grew closer. Two days before my transplant, I emailed the teachers to tell them what was going on, and to invite them to join me as I explained to the student body that I would be going on medical leave for my transplant. The amount of support and love I received from the students and faculty was overwhelming.
I worked until Wednesday night. The following morning was my surgery.
I did my best to get everything as much in order before the surgery as I could. I even prepared our mishloach manot so they would be ready for Purim two weeks later.
Going in I was feeling guilty, because I knew that watching my mom have to go through surgery and then an uncomfortable or difficult recovery, was because of me. Because she was giving me her kidney. It was so emotional for me. It was because of what I needed that she was being put in this position. And yet, my mother kept reminding me that she would have given me any organ she could to save my life. She also kept telling me that she simply felt like a shaliach from Hashem. Her emunah throughout this process was truly inspiring.
On the day of the surgery, they take the donor in an hour before the recipient, so they can remove the healthy kidney and prepare it for transfer. Baruch Hashem, it was all successful and went smoothly from start to finish.
The recipient and donor do not recuperate in the same area of the hospital. So my husband was running in-between wings, being there for me and my mother. My mother-in-law and father-in-law as well as my siblings were there for us too. I could not have gone through all of this without all of their support.
When we both walked out of the hospital, we were uncomfortable but we were miraculously totally fine. It was a very short hospital stay for both of us.
And then, two weeks later we both ended up back in the hospital, for minor complications. I cannot begin to describe the amount of care and brilliance of our doctors. They made themselves available to us any time to answer questions and gave us incredible care.
Three weeks after the transplant my mom was totally back to herself. But my hospital stays were not over.”
(5/7) “Get Well Soon”
“Today I have to drink two to three liters of water a day. If I don’t, I get dehydrated and my kidneys do not respond well. I ended up in the hospital three times after my transplant. Once for ten days, once for four days, and once for four weeks, just now in August 2018. As I began to recognize other patients who returned with complications like I did, I was comforted in knowing that nothing was out of the ordinary. At one point, I had gotten a virus that is common among transplant patients because of how immunosuppressed we are. It took four weeks to fight the virus. It was hard to be in the hospital for so long. It was truly depressing. I would not wear the hospital gown and only wore my own clothes and pajamas. I was allowing myself to get treatment, but I was not allowing myself to feel like a hospital patient. I needed to feel like myself, for my own emotional health.
The nurses all knew me because I had been there so many times over the eight months. They were so kind and became like friends. We would joke that I was the 14th nurse on the floor.
My husband visited me daily and was able to stay with me for Shabbosim. My family and friends were there for me the entire time, and came and visited me during my stay. People sent food for Shabbos, lunch during the day, get well soon cards, iTunes gift cards, and books. They sent me tremendous love.
But when I was alone, it was really lonely.
When I was initially out of work after my transplant, I was out for ten weeks. There wasn’t a day that went by that I did not receive an email from a teacher or student at school. It was unbelievable that I was still on the minds of these kids; they had tests, studying, home life, school life and yet they still took the time to care about, ‘Mrs. Konig’ and wanted to know how I was doing. It was so touching. They gave me so much chizzuk throughout the experience.”
“I will be on immunosuppressants for the rest of my life. The prognosis is great. Thank God, my medical team said everything went well except for those hiccups that landed me in the hospital.
My kidney is responding really well and they say that the life expectancy of a transplanted kidney can be anywhere from 15-25 years. Until then I am not going to worry about what will happen when we reach that point. I am focusing on the now. I have students that are doing science experiments on taking DNA and growing organs outside of the body. I joke that my students are going to be the ones to give me my next kidney.
I am 35, had my transplant, and can now move on with my life. We can have children in due time and Thank God, I have my health, and we can be a family.
There is so much sensitivity about IVF and infertility. But people often do not realize that there are other reasons why people do not have children. Sometimes it is by choice, and sometimes it is for other health reasons.
How many times have people asked me, ‘How many kids do you have?’ and when I respond, ‘I do not have kids yet,’ they respond in an awkward and apologetic way. Then, I find many people make assumptions about why I do not have children. Do not make assumptions about my fertility. You do not know why I do not have kids, and to be honest, it is none of anyone’s business.”
“I am the oldest of four kids, and my parents got divorced when I was nine. Life has always thrown curveballs at me and I truly feel blessed with a positive disposition which has enabled me to persevere regardless. I have the capacity to pick myself up from hard times and keep going.
When anyone would ask me ‘Aliza, how are you handling all of this?’ I would respond, ‘Things are serious but I have to keep my head up, keep going and live my life, I cannot let this get me down.’
I had my fair share of crying and times when it was too hard and felt unfair. There are times I was a little angry, and it did affect my davening. But after every step I would say, ‘Be’ezrat Hashem, I will get better’ or ‘Thank God, this is just a small bump in the road.’ I feel tremendous hakaras hatov that my mom was willing and able to be my donor, this meant so much to me on so many levels, and that I had additional donors lined up to help me. You meet people in the hospital who are on dialysis for years because they do not have a donor.
There is no pushing things off for me. When something needs to be done, I just do it. I was never scared because I always felt there was a light at the end of the tunnel. I just needed to get that transplant, and then I would be ok.
There are some days when I ask myself, ‘Why does my life have to be so much harder than it is for others?’ I met my husband at 31, it took going on a lot of terrible dates before I met ‘the one.’ Now I cannot have a family easily like my siblings and friends? Why do I have to deal with all of these other health issues that come along with it?
I could be angry, or, I could move on. I am a ‘big move’ on type of person. That is how I have always coped. My upbeat attitude, mixed with faith and an intention to live the life I want to live, gives me the opportunity to move past struggles, and live my life to the fullest.
That being said, I could not have gotten through any of this without the love and support of my husband Sam. When we got married we never thought this would be how our lives would turn out. And as I look back on the last few years, I cannot imagine having anyone else by my side through this journey.
God knows that I like to talk, and that I have the ability to speak publicly as an advocate and as an educator. When I was single, I spoke about sensitivity towards singles and the ‘shidduch crisis’. Now I have gone through major health and family planning challenges. My mother gave me the gift of life twice and I want to be able to use my strength to share my story; to end the stigma around health issues in our community. I know I am not the only one going through this, and I want to help others through their own journey.”