This is written the first year of dialysis 2005:
I was 22 years old when they discovered that I had problems with my kidneys. I was pregnant in my first trimester when I started to have preaclamtic symptoms which was unusual for someone to have twice this being my second pregnancy. They discovered that my right kidney was smaller than the left. They wouldn’t be able to do any type of testing until I gave birth. The duration of my pregnancy seemed pretty normal.
My pregnancy was high risk and I decided to stop working but I continued my last trimester of school. I was being closely monitored and everything seemed to be going good. I graduated with my AAS degree in Computer Software Applications in the beginning of July 2001. I had planned to really take it easy for the last trimester of my pregnancy.
A week after my graduation I had went to a normal follow-up appointment, come to find that my creatinine levels and blood pressure were real high and it was dangerous for the pregnancy and I was immediately hospitalized. After almost 2 weeks on bed rest my creatinine levels worsened and they made the decision for me to induce labor. I delivered emergency c-section, to my youngest Marquez Anthony at 30 weeks gestation, 2 months early weighing at 2 pounds and 13 ounces. My kidney function immediately became better. At the time my main focus was my miracle baby. It was very hard to see your baby so tiny fighting for their life. With many prayers and full faith he did real well and was able to come home after a little over a month. For the next couple years I was overseen by a kidney specialist, “nephrologist” .
They tried to do several test but it was challenging having one kidney smaller than the other. They didn’t want to do biopsy on the good kidney with the chances of damaging the good kidney and they wouldn’t get a good biopsy on the bad kidney. They weren’t able to pin point what was going on with my kidneys. It seemed that my creatinine levels & blood pressure was stable.
So I continued to live a pretty normal life. I worked full-time and was managing a household and raising a family. The nephrologists and doctors continued to oversee me periodically and thought I was in great health. I watched just about everything I ate and started to make lifestyle changes. They never talked about dialysis or even the chances of my kidneys totally failing. So that was something I just didn’t even think about or could ever imagine happening to me. Than in 2004 at the age of 24 years, I started to get kidney infections which put me in the hospital several times. They noticed my good kidney started to lose its function. This became a pattern.. Getting hospitalized with a kidney infection abnormal labs with high creatinine levels.. Get treated.. and my health stabilized. This went on for the whole year. It was a very tough year.
It put a lot a stress on me and my family and especially my husband who would have to work, manage the household and tend to a wife in the hospital. He had to rush me into the hospital a total of 5 times just in a year.. Each time being hospitalized 3 days to up to a week. These were the hardest times especially with 2 young sons. It was hard for them just to see me getting hospitalized over and over again. A lot of uncertainty and I had once again came to point in my life where I was face to face with my life and spirituality. I chose to fight and not let the sickness take over. I know this was what prolonged my kidney function.
In February 2005 we moved into a house. It seemed like a whole new beginning, a fresh start. We were moving into a bigger space and I was going to only be minutes away from work. During the move I started to get sick. I went to see my doctors and they noticed my blood pressure was real high so I was put on blood pressure medicines. I still continued to feel sick and this became a day-to-day struggle. I would go back and forth to my nephrologists and doctors and they continued to tell me it may be the side effects of the medicines or all these other things but not my kidneys. My labs would come back normal. I didn’t know if it was from the stress of moving and getting settled into a new place, managing family life with work.. I thought of everything but my kidneys failing. Still something that I didn’t think of even at that point.
Than just a little over a month.. I woke up and I had pain all throughout my lower back. I called the an advice nurse and they told me to take Tylenol and to see if that would help. I remembered that weekend I just continued to do as normal.. I went to family parties, went to work… But the pain just started to get worse and I remember talking to a coworker and he mentioned that I should really go to the doctors.. So I called in for an appointment and insisted to be seen. When the doctor examined me. He started to tell me it could be some type of syndrome. Even as I mentioned my kidney history they gave me this other classic text book diagnosis. He prescribed pain meds, gave me a lab slip and sent me home. That same day my sister came down for my uncle’s wedding.
I remember that night.. It was what would be considered my last night of normalcy. We went out for take out, went to a couple of stores came home and watched a movie. The next morning I received a phone call.. It was my kidney doctor (nephrologist).. We all heard the message off the answering machine saying that I needed to go to the emergency right away. He told me my labs shown that my kidneys were shutting down. My creatinine was at 8.5, my red blood count & hemoglobin count was dangerously low and I would need a blood transfusion right away. I remember that day so clearly. I couldn’t believe what was happening. I just knew that my life was going to forever change from that moment on. I was hospitalized for almost 2 weeks. The doctors wanted to see if my kidney function would come back as it did before. They ran all kinds of test. I felt at my very worst. I was nauseous and it seemed like all the sickness catched up to me. The hardest part for me was not seeing my boys. They both were sick with the flu and couldn’t visit me. After 3 days of no lab improvements they told me I needed to go on dialysis. That’s when it really hit me. I had so many emotions going on. I felt angry, sad and really felt too close to death at this point. Losing my health really felt like the life in me was being stripped away. I had a procedure to place the permacath (A catheter that is inserted into the jugular vein on the side of your neck for an immediate access for dialysis). This is when it really became real to me. This was it.. There was no turning back. Everything was going to have to change.. I had to my make some serious life changes… How can I give up so much at this age. It didn’t feel fair to have that taken away from me. I just wanted more time…. More time to learn from mistakes.. I was only 25 and this was supposed my prime age. It was really hard to accept it at first…
My first dialysis treatment was really surreal. To watch my blood going into a machine. This was going to be my life support. The only way for the toxins in my blood would get cleaned. I had to accept it! I had to accept that this was my life support. The next day I remembered waking up feeling good. I was able to eat and get up. It helped me overall to make a shift in my thinking. I needed to pick myself back up..
They decided to do a MRI scan. I was excited because this was going to be the closest I was going to get to a diagnosis for my kidney.
The MRI scan results read: Atretic renal arteries visualized bilaterally with narrowing throughout their lengths. This is most likely due to atrophy in both kidneys. This correlates well with what was seen on ultrasound with echogenic small kidneys bilaterally, right worse than left. The disease is most likely a medical renal disease otherwise known as intrinsic renal disease and this is secondarily causing the renal arteries to be atrophic. There is no beading or focal stenosis present in either right or left renal artery. The renal arteries are in fact so small that they are only seen on one reconstructed plane well. Basically the arteries in my kidneys have shrunk significantly which made it clear that I had end stage renal disease.
The doctors said the chances for my kidney function coming back were very slim however there was a small chance that the arteries can open up. But the damaged was made.. They told me if it came back it would just buy me a little more time. I had to start looking into kidney transplantation…
My sister, Maritess sent me all kinds of spiritual and uplifting books. She has always helped me turn to God especially in moments where I couldn’t understand what He was doing. I had my share of spiritual battles in my lifetime. However the days and nights in the hospital really made me come face to face with God. I felt like cursing him, I got on my knees asking him to heal me; I cried out his name, I prayed the hardest I ever had in my whole lifetime. With all this an image of His sacrifice always came in my head. It just broke me down to remember what he has done for me and for my family. This pain of mine couldn’t even compare to the price he had to pay for my sins. It came clear to me that my body is temporary. I had to reach out for more and learn how to live outside of this body. It was time for me to live through the spirit. I knew this was the only way!
I went back to work after three months and continued dialysis 3 times a week. I was actually feeling great and doing well. I had good days and bad days. Overall I truly rejoiced each day. Going to the dialysis unit became routine for me. I was one of the youngest patients and all the nurses took good care of me. In October, I had a surgery to place another access, a fistula which is on my left upper arm. I was ready to remove my permacath after having it for 9 months. I was just ready to have the luxury of taking a full bath. I was constantly scared of getting infections and had to be treated several times with antibiotics whenever I ran fevers at dialysis.
During that following winter around Christmas I started to get real weak. I had an overwhelming tiredness that I couldn’t shake. The days were getting harder and by the time I came home from work and dialysis I was so burnt out and barely was able to function for my household. My labs shown that I was losing more kidney function. My phosphorus and potassium levels were dangerously high and I started to retain lots of fluid. The first week of January I was rushed to the hospital and I had pneumonia. It was confirmation that I needed to take a step back and live life a little bit slower and it was okay. I just didn’t have that same energy to be the busy working mom/wife that I was before.
It was a good try and I wanted to be an example especially to my kids but it came to the point it was no longer worth it. So far my health has sustained. I am currently on the kidney transplant waiting list which can take up to 5-6 years. I am patiently waiting and fully prepared to have the surgery done. I don’t think I could be more ready than ever.
I trust I’ll be in God’s hands. He has always looked out for me.