What does ASAP really mean? I know what it stands for, As Soon As Possible, but for who?
I received a phone call on Wednesday morning from the nurse at my dialysis center. She told me to go to the ER ASAP because my hemoglobin was extremely low and I may possibly need a transfusion. I packed a bag, called my sister, woke my mom and off to the hospital we went, ASAP. When we arrived at the hospital I was taken into the emergency room where my ASAP wasn’t necessarily theirs. Don’t get me wrong, the nurses and doctors at this hospital are fabulous. Things take time in hospitals and there are more important ASAPs than mine. A few hours later I was told that my hemoglobin increased and I didn’t need a transfusion. Off to dialysis I went.
Fast forward to Friday, I was at dialysis and my nephrologist (Kidney Doctor) was doing rounds. We were trying to figure out why my hemoglobin drops every so often and I mentioned my menstrual cycle and that the older I get, the heavier my flow. Maybe my hemoglobin runs low when I menstruate so I may need a hysterectomy. He wants me to see my gynecologist ASAP! There are those 4 letters again. I immediately call the Gyno because, in my mind, this is an emergency situation, ASAP right? Their first available appointment is in 3 weeks. THREE WEEKS?? That is not ASAP!! I was planning on seeing the doctor AND having a hysterectomy before that!!
Again, what I feel is ASAP is not everyone else’s ASAP.
(This entry is a long one but Mom deserves it)
I woke up this morning feeling very emotional. I am not too surprised, I am always emotional these days. Today was different though, my emotions were about my mom. Today is her birthday and so I thought I would dedicate this entry to her.
Growing up I was a pretty quiet child. I didn’t cause too many issues. I didn’t get in trouble in school, I had good friends and tried to make my parents proud. I grew up in a loving home and my house was the hang-out house. My friends were always over and many times you would catch them sitting around the kitchen table talking with my mom.
So, as I sit here and rehash my past in my mind all I can think of are the times when my mom was there for me… Marriages, Divorces (yes plural), packing and moving more times then I care to discuss.
After my first divorce, I moved in with my parents. I drove down to their house one day and literally could not step foot out of their house for weeks. I was experiencing my first bout of anxiety and none of us knew how to handle it. I could not eat, I physically could not put a grain of rice in my mouth. I remember Dr. Bernstein calling and threatening to put me in the hospital. I would try to drink an Ensure a day and even that was impossible. I barely showered and my clothes began to fall off. I was afraid of sleeping. My mom would stay up with me until all hours of the night. I would start to fade on the couch and she would tell me to go to sleep but when I would tell her I was awake she would continue to sit with me. I was so afraid of everything and she was always there. I would finally go to my room and sleep with the light on. I would wake up in the morning dry heaving and she would wake up and start her day just being there for me.
Those months were the scariest of my life. I lost who I was and did not know how to find my way back. I don’t think I did for many, many years.
And so began my journey with kidney disease. Mom was at every doctor appointment, every test, sitting and waiting for results with me. You name it, she was there.
I remember certain conversations like they were yesterday. The realization that I would never have the opportunity to have my own children was probably the hardest pill to swallow. I remember walking outside of Congregation Beth Am with her and my niece, Kiley, who was a baby and we had been trying to get her to sleep. I think that was the first time I actually had clarity about God’s plan. I was not well enough to raise my own children. It wouldn’t be fair to me or to them. It suddenly became clear and I was okay with that. Mom just listened, as she continues to do so well. There was nothing she could say to make me feel better and she knew that. All I needed was her presence.
When I had my transplant in August of 2013 mom basically moved into my townhouse with me. I was living in Wesley Chapel at the time so yes, she picked up her entire life and moved across the state for me. She helped me through my surgery and was there as I tried to rebuild my life after another failed marriage.
Fast forward to recent years. I have been back and forth between Lake Worth and Tampa trying to figure out where I belong. I am still not sure, but now I reside on the East Coast of Florida. I do not plan on moving far anytime soon. There is something to be said about being home. Mom continues to go to every single appointment with me. She is at very surgery, every procedure and is constantly rallying behind me. I know that I do not always say it or show it but I am blessed!!
My mother has listened to me talk about school, students, parents, men, dates, doctors, procedures…
God knows we don’t always agree but man, does that women have my back.
I was fiddling around on Facebook the other day and I came across the original letter I wrote when I first learned I would need a transplant many years back. I decided to post it with an update
Many of you received an email back in 2007 stating that I had suffered from kidney disease since childhood. Fortunately, I was able to maintain function with medication for many years.
When I moved to Florida I found a wonderful nephrologists at The Cleveland Clinic to continue monitoring my kidney function. I was advised that given my numbers, either a transplant or dialysis would be necessary within 1-3 years and in my case, the choice between dialysis and a transplant were based on healthy lifestyle and quality of life.
Plan A was a transplant, which would allow me to continue teaching and maintain a somewhat normal quality of life. Plan B would be dialysis, which would completely change my life due to treatments 3-5 times a week for 3-5 hours per session.
While I had passed the 1-3 year mark my doctors projected, my kidneys had finally had enough and I needed to find a living donor as soon as possible.
Thanksgiving of 2012 Lee , my brother-in-law, and I announced the news that he was a match. All was right with the world!!!
As luck would have it, in September of 2012 I contracted C-Diff (Clostridioides difficile is a bacterium that causes diarrhea and colitis (an inflammation of the colon) and doctors would not transplant me until I was cleared by an infectious disease doctor. For almost a year I was put on every single medication created to cure C-Diff; pills, liquid antibiotics , pic-lines, and fecal transplants. Yes, Fecal transplants. Two to be exact.
Tampa doctors didn’t know what to do with me so I headed to the Mayo Clininc. Mind you, by this point my kidney function had reached below 15%, therefore, I needed to get a fistula and start dialysis.
The Mayo Clininc told us to try The Cleveland Clinic where we met a remarkable doctor who sat and listened to my entire sob story and then wholeheartedly preceded to tell us that the FDA no longer allowed medical professionals to do fecal transplants.
SERIOUSLY? I could not catch a break! I can actually remember sitting there dumbfounded with tears rolling down my face. My mom looked at me, helpless and all I could do was stare back at her.
As we sat in disbelief, anger, sadness, until the doctor finally took pity on us and decided to fight for me. If we could get the FDA to approve my procedure, she would perform it.
With calls to the FDA we were able to get it approved and I finally had a successful fecal transplant in May of 2012.
After almost a year on dialysis, this speed bump was cleared and on August 1, 2013 I received my new kidney.
Smooth sailing, right? Please!! I rejected 5 days after surgery and went back into the hospital for about a week. The doctors blasted my immune system with plasmapherisis so that I would not reject. Thank goodness they were able to save the kidney and so started my war with prednisone.
During the summer of 2018, I woke with a fever and wasn’t feeling well so I went to the emergency room. I was admitted and tests were being ordered. Based on a biopsy, I was rejecting the kidney all over again. On July 5, 2018 I was driven to Tampa General Hospital by ambulance and didn’t return home until July 18th. I was an outpatient enduring plasmapheresis, IVIG and Rotuxin treatments every other day. Unfortunately, I was losing the kidney.
March 2019, I began dialysis again and 7 surgeries later I am here looking for another hero.
This letter is my effort to spread the word, again, that I am seeking a living donor who might be a potential match.
If you are interested in more information about how you can help, please contact Tampa General Hospital at 813-844-5669 or email@example.com. All communications are completely confidential.
I am often asked by total strangers if it is ok for them to pray for me. My response is always the same; I am appreciative of any and all prayers. I have been part of prayer circles in school cafeterias, the local jewelry store, on sidewalks, in temples, and churches. I have been told that people are praying for me all over the world. Today, I was touched when over 50 Hernando County teachers said a prayer for me.
I spent my entire life going to Hebrew school. I grew up on Jewish values. I did what was expected of me; I went to college and married a nice jewish guy. Or so I thought…
So, as I got older and life happened I started to question my faith and I wondered where God was in my life. I began to turn towards people I had lost, my grandfather, in particular.
I spoke to him and looked to him for help and guidance. I look in my rearview mirror for Ellen and confide in her as if she was there, listening. I continue to do this now but I have also allowed God back in. I am not sure what role he plays yet because I am constantly seeking the wisdom to figure out what my purpose is.
I do look towards God for that answer and so no matter who or what we pray to I will accept any prayers to help guide me through this life.
I never really thought about being an organ donor until I became the person who needed an organ. The teacher in me is coming out and I feel the need to inform people of the importance this one decision can make.
Over 95,000 U.S. patients are currently waiting for an organ transplant; nearly 4,000 new patients are added to the waiting list each month.
Here are some facts from kidney.org:
• 37 million American adults have CKD (Chronic Kidney Disease) and millions of others are at increased risk.
• Early detection can help prevent the progression of kidney disease to kidney failure.
• Heart disease is the major cause of death for all people with CKD.
• Glomerular filtration rate (GFR) is the best estimate of kidney function.
• Hypertension causes CKD and CKD causes hypertension.
• Persistent proteinuria (protein in the urine) means CKD is present.
• High risk groups include those with diabetes, hypertension and family history of kidney failure.
• African Americans, Hispanics, Pacific Islanders, American Indians and Seniors are at increased risk.
• Two simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.
The thing with kidney disease is that you never know if you will be affected. I was not diagnosed until I was a teenager, almost in my 20’s. The doctors are not sure what caused my kidney infection, however, from the information they were able to gather, they feel it was from Chronic UTI’s as a child. Why am I sharing this information in a public forum? I want to educate parents of young children. If I could give any advice I would say:
1. Keep ALL your child’s medical records. After a while it is hard to get your hands on that kind of information. (Especially when you need it and you’re 48 years old).
2. If your child suffers from Chronic UTI’s ask the doctor not only to prescribe an antibiotic but to also keep an eye on your child’s kidney function.
I saw Dr. Jan today and we talked about a plethora of topics… family, love, relationships, death… just to name a few. It amazes me when I think about the number of different thoughts that run through my head at any given time. And I guess that’s why I’m starting this blog because I need to get these thoughts out and maybe they will even help someone else.
Believe it or not today we spoke a lot about other illnesses and My heart goes out to anyone who is dealing with any sort of illness. Not only is it hard on the patient it is hard on the caregivers as well. I can’t imagine what my family goes through. I know they feel helpless.
So, as I sit on Dr. Jan’s couch crying in anger I realize I am annoyed at how much attention other illnesses get as opposed to Kidney Disease. When you walk into a room you can often tell if a person is battling cancer but the truth is, you wouldn’t be able to pick out the person suffering from kidney disease. People see me and tell me how fabulous I look and although I appreciate the compliment, I wish people could see my insides. I have three kidneys now and none of them work. I am dealing with a disease that ultimately could take my life. My left arm has permanent bumps due to the fistula and bruises that come and go depending on how dialysis goes. I wake up dry-heaving and vomiting in the middle of the night so bad that I pop blood vessels under my eyes. I need to make sure to watch my fluid intake, nausea has become a part of my daily existence. These are only the physical side-effects. I haven’t even touched on the mental effects.
I brought this up with Dr. Jan because I feel guilty about the anger I have towards the lack of attention CKD receives. Chronic Kidney Disease (CKD) effects an estimated 37 million people in the U.S. (15% of the adult population; more than 1 in 7 adults) and approximately 90% of those with CKD don’t even know they have it. 1 in 3 American adults (approximately 80 million people) is at risk for CKD.
Currently, there are over 93,000 people on the kidney transplant waiting list. The wait for a deceased donor could be 5 years, and in some states, it is closer to 10 years. Patients are prioritized by how long they’ve been on the waiting list, their blood type, immune system activity and other factors.
I know I still have a voice. I know there has to be a reason that I am enduring this hell. Maybe it is my “job” to blow up social media and talk to people about CKD.
I decided to start this blog because I needed an outlet for the hundreds of thoughts I have at any given moment. Why go public instead of keeping a personal journal? Because right now I am living a personal hell and thought that maybe, just maybe while getting my thoughts out I could also help someone who is going through difficult times. I am not 100% sure what is going to be written here but I can tell you it’s going to be from my heart. I cannot guarantee that you will agree with my thoughts but please understand the intensity behind my words.
I have Kidney disease. I have dealt with this for most of my life but I found out about 9 years ago that I needed a transplant. That was when Lee, my brother-in-law decided to get tested to see if he was a match. Fortunately he was a perfect match. After a year of dialysis (I could not be transplanted because I had C-Diff) I was finally cleared for my surgery and Lee gave me the gift of life. My body rejected the kidney 5 days after the transplant and I was back in the hospital so that doctors could basically blow up my immune system so that my body would not reject. I was lucky enough to get 6 years added to my life. Unfortunately, My body rejected the kidney and in 2018 I spent the summer living in a hotel across from Tampa General Hospital. I was receiving plasmapheresis every other day in hopes of saving the kidney. It did not work and in March of 2019 I started dialysis again.
After my first transplant failed I didn’t think I could go through asking someone to donate again. I am now listed at Tampa General Hospital and working on Cleveland Clinic. It could be anywhere from 4-6 years before I receive a kidney from the transplant list. Transplant is also more difficult the second time around for me because I have built up antibodies. After speaking with my doctors it was consensus that my best option is to look for a living donor again.
According to kidney.org, “Our immune system naturally forms antibodies as a protective response against bacteria and viruses. In the context of transplantation, antibodies are good when they are ready to attack foreign invaders that can lead to illness, but antibodies can also be ready to attack foreign tissue – such as a new kidney transplant.”
I have 99 out of 100 antibodies. This makes finding a match very difficult. How did I get antibodies? Anti-HLA antibodies are formed by the immune system when you are exposed to proteins that appear similar to tissue types. This most commonly occurs in the setting of previous transplantation, pregnancy, or blood transfusion. Occasionally the cause of anti-HLA antibody formation is not known. Unfortunately once you have anti-HLA antibodies, they do not go away on their own. Antibodies can be difficult to remove from the body, although different treatments have been tried. One of these treatments is plasmapheresis. I underwent six weeks of plasmapheresis last year. Unfortunately it did not work.
I was never one to really ask for help but recently I find myself doing it more and more. So here it is… I need help finding a donor. I know that this is a lot to ask. But I guess what I’m asking is that if you’re reading my story, please share my story. The more people that read my story the better my chances of receiving a kidney.
I am finding this entry very hard to write because I don’t want anybody to read it and think that I take this lightly. I know that what I am asking of somebody is huge and I know that there are many things to take into account. Miracles happen every day and I have to believe that my miracle is out there..
Here’s the cool thing about transplantation, Someone can choose to donate for me and if they are not a match for me then they will match us with another transplant patient and donor.
If you are interested in learning more you can contact the Cleveland Clinic or Tampa General Hospital and they will give you any information that you need. Everything is confidential. I do not find out if people call to get tested for me until they decide to tell me themselves.
I am excited for what the future holds for me. No matter what comes my way I will continue on this journey. I will continue to do dialysis three days a week for four hours a day and I will continue to blog and hope that someone else out there finds comfort in my words.
I am so appreciative for all of the support that I continue to receive.
Again, I am asking that you please share my story and please ask your friends to share my story. Social media is a powerful thing!
If you would like to be tested or know someone that may be interested you can contact the Cleveland Clinic at ccflorida. donorscreen. org or Tampa General Hospital at 813-844-5669 or firstname.lastname@example.org