I am so grateful for the second chance at life that I have been given, as it is so precious.
My name is Sarah. At the time of my illness I was 25 years old, on my way with a great career, going to school to get my Graduate Gemologist degree, and recently engaged to my boyfriend. For three days my new fiancé was battling with the flu, or so we thought.
The day was May 29, 2004; I went to a Padres game after work with work associates and I noticed that my urine was brown. Thinking nothing of it, as 3 months earlier I had a UTI that caused my urine to turn brown, I thought I was getting another UTI. The following day was my day off and my fiancé and I went to see a movie. Walking from the parking lot to the theatre, I got a weird sensation in my legs and felt like I would faint. I had a headache, and since I suffer from migraines, I took some Excedrin and enjoyed the movie. When I got home I called my mother for advice, as she was a nurse practitioner. She had recently had surgery on her foot and was bedridden and was not expected to walk for about 6 months. I explained my symptoms of having a migraine and brown urine. She said that it sounded like I was dehydrated and to start downing water to re-hydrate my body. I followed her orders and went to bed early as I was tired.
I woke up the next morning and got ready for work. It was May 31, 2004. I felt shaky and my kidneys had started to hurt, I also noticed that bruises covered the entire backs of my legs. I arrived at work and thought maybe I needed food, so I got a breakfast sandwich and some orange juice. Settled down at my desk and my co-worker looked at me and asked if I was alright, I didn’t know it at the time, but I guess I was really pale and looked horrible. I said I was fine and that I had a headache and maybe a UTI, no biggie. I took one swallow of my orange juice and immediately ran to the bathroom to vomit. There was blood in the vomit and I was scared. In shock I walked back to my desk and told my co-worker.
He immediately called my boss and explained the situation and I went home. Upon arriving home I called my mother, as I was scared, I had never felt that way in my whole life, tired, drained, and shaky. She said to get to the ER immediately. My fiance drove me, and we arrived at the emergency room around 9 in the morning and we waited. I was finally called into triage and my blood pressure was way out of whack. They took me into a room and asked lots of questions. The nurse then asked for a urine sample; when I provided it, the nurse had the audacity to say it wasn’t urine and it didn’t come from me, as it was soda pop-brown. I explained that yes, that was my urine, and that was the reason I was there. Tons more question and some blood drawn, more blood pressure tests.
They finally moved me to the hallway not allowing me to eat or drink, as they didn’t know what was wrong with me. About 8 in the evening the nurse informed me that they were transferring me to a hospital closer to my primary care doctor as they still didn’t know what was wrong with me. I arrived via ambulance to the other hospital around 10 at night. Three eager residents greeted me and settled me into my room and we started another round of questioning. I was very worried that they would think my fiance was beating me from the amount of bruises I had, which he would never do, and they separated us during the questioning. About 2 in the morning on April 1, 2004 the residents informed me that I had a disease called HUS caused by E. coli O157:H7, but I was very lucky because the head of nephrology was a specialist in HUS and that he would be in first thing in the morning and did I have any questions. I asked if I could eat because by now I had a raging migraine. They said yes and brought me a tray of food and the nurse said that they were waiting for blood to arrive as I was to have a blood transfusion, but the blood bank didn’t have my blood type available and it was being delivered as soon as possible.
They had sent my fiance to the ER to run a slew of tests on him since he had suffered from the E. coli O157:H7 the previous 4 days and not the flu as we previously thought. I finally slept. The nurse came in some hours later and had my blood. I noticed it had arrived from Tucson, Arizona; my birthplace and where my parents and brother lived. I also like to believe that since my brother was a regular blood donor, that maybe it was his blood I received, it was a small sense of peace in my time of desperation.
At 5am on April 1, 2004 I was woken to a blood draw where they took a ton of blood for tests. So much in fact, the tech was scared as she had never drawn that much blood from one person at a time. Shortly after she was done, a team of cardiologists came in to place a dialysis catheter in my groin. The doctor said that setting everything up and sterilization took about 50 minutes but the actual insertion of the catheter would only take a few minutes. So my fiance went to the cafeteria to get some food. Unfortunately, the doctor and another cardiologist could not get the catheter in. They poked and pushed and tried for 45 minutes. Finally, an ultrasound tech came in to try to find the artery and even Dr. King (the HUS specialist) tried to put it in. I’ve never felt such pain in my life as they don’t use medication, since it was supposed to be a quick needle poke. After an hour they finally succeeded in placing the catheter. A 5 pound weight was placed on my groin to keep me from bleeding out and was told I could not move. The bruises left from their administrations are the worse I’ve ever had in my life. My thighs, groin, and stomach were covered for weeks with bruises.
I was then moved to ICU where a flurry of activity happened. I was set up with IVs, Morphine, a Foley catheter, and dialysis started. I remember my nurse well; she was wearing a t-shirt with a monkey on it and scrub bottoms. She was incredibly nice and took the time to explain what was going on and to make sure I was comfortable as I could be as I couldn’t move. There was a window in my room and it was bright. When my first dialysis session was finished I started my first plasma aphaeresis treatment. I could not imagine a more horrible treatment.
I don’t really remember all the details of my stay in the ICU as I was on morphine and only remember specific things. I remember a nurse coming into bathe me and we talked and she mentioned having a daughter my age and how horribly unfair it was for me to be there. I said something like it was okay or it was going to be okay and she had to leave the room as she started to cry. I remember the horrible pain in my back from the 5 pound weight and not being able to move for about 2 days. I also liked having the TV on all night because I would drift in and out of sleep.
I was taken down to the OR to get a dialysis catheter placed in my chest, in the artery that goes up my neck, and to have the catheter in my groin removed. Upon reading my medical records they moved me to a room closer to the ICU nurses station so that they could monitor me more closely as I was going downhill. In talking to my parents, I learned that my doctor called them and said if they wanted to see me alive, they should get there within the next 24 hours. My father and uncle came, as my mother could not walk from her surgery but my mother and I talked every day on the phone. My father was driving from Tucson and the nurses would give me updates on my family’s arrival; for example, the nurses would tell me, “they are two hours away.” My platelet count was down to 2 where most people are between 100,000 and 350,000. I was still receiving blood transfusions.
My family finally arrived. It was so good to see them and have them near me. I was finishing up my second plasma aphaeresis treatment when I started to have an allergic reaction to the plasma. My face started swelling and a bunch of the staff was called in and I was taken off the dialysis machine. I was so scared I just stayed very still and kept my eyes closed as I didn’t know what was happening or going to happen. I don’t know what the medical staff was doing, they did usher my family out of the room and started yelling at me to open my eyes and to keep looking at them. They were yelling at each other and there was a lot of movement. I wanted it all to stop. Then everything was getting quiet and peaceful, nothing hurt, and there was no sadness or fear. A white light appeared and a being that was floating and beautiful came to me and said, “This is not how you go, this will not hurt you.” I understood. I don’t know how I understood, but I understood so much more at the moment. I knew that from that time on, through all my treatments and no matter how bad anything got, that I could handle it. I understood that if I were to die, it wouldn’t be bad.
I guess you could say that I “came to” or woke up. Everything was loud again, someone was yelling at me again to open my eyes, but she was watching a monitor or machine, not actually looking at me. Someone was behind my bed checking plugs. Reading my medical records, they did not say that I died, but that there were blips on the machines and were equating it to faulty power or monitors. I don’t really know what happened next, I think I went to sleep. I was on morphine and drifted in and out. I don’t remember when it was day or night. I know that some people came to visit me and that my father was there. I remember at one time crying and wiping my eyes on a wash cloth and the cloth turned yellow. I had jaundice. I also noticed that none of my friends would touch me, but one. When he did I realized I was orange.
One other horror I suffered was I was afraid I would have to shave my head. I have very long, thick hair. By laying down and not being able to move, my hair started to mat. One nurse in the ICU came in and tried her best to brush it out with a small hospital issued brush. I couldn’t brush it myself, as I couldn’t move and when I did, I had tubes coming out of IV’s in each hand and arms, my chest and groin and in my nose. I guess you could say that “life went on” for me in the ICU. I had plasma aphaeresis every day and dialysis every other day. After 7 days I was moved into the regular hospital. I had blood draws every day, plasma aphaeresis every day, and dialysis every other day. I was still on IVs and oxygen and receiving blood transfusions when I needed it.
Seven days later, I was released from the hospital and I got to go home. I got to go home to sleep at night. They said that patients did better if they were able to go home at night. I still had to go to the hospital every day, check in, and receive plasma aphaeresis and hemodialysis. Plasma aphaeresis is something that I would not wish on my worst enemy. I usually got sick during plasma aphaeresis. I was cold all the time from the frozen plasma; I was tired and groggy from medications, and sick on top of it. Many times the nurses did not make it in time with the emesis basin.
After a few weeks I was able to go to a dialysis center for my hemodialysis. It was tricky because I was still going to the hospital for plasma aphaeresis. Many days I had to wait for hours for the plasma to arrive. Some days, we were so lucky if the plasma was available as I needed 3 liters a day. I also got sick from the hemodialysis. I remember a nurse saying to me later when I was better, “Geez, you thought we were trying to kill you the way your body reacted.” I feel bad for all the other patients in the room who had to watch me get sick. Personally, if I see a person vomiting, I’m a joiner. Often times I would have to pull over on the way home to vomit on the highway. I was on plasma aphaeresis for 4 months and being on hemodialysis, I was limited to only 2 liters of water per day. This included all fruit, soups, vegetables, etc.
Eventually, I was transitioned to peritoneal dialysis. I was doing well on that type of dialysis until I contracted a rare form of tuberculosis at my exit site on my skin and had to have the catheter removed in emergency surgery. This was about a year after I first showed up in the emergency room. They also had to remove quite a bit of flesh around the exit site. My tummy is very heavily scarred because of this. During this time I had another catheter placed back into my chest so that I would be able to be on hemodialysis again.
My fiance left me at this time, as he could not accept what was happening to me. I was also fired from work and lost my medical benefits even though I was on the Family Medical Leave Act. After many months of healing and being on heavy antibiotics that made me very sick, to treat the tuberculosis, I was able to try peritoneal dialysis again. During this time I also lost a lot of weight. I’m 5 ’10” and weighed about 165, but I dropped down to 145 pounds and my doctors told me to start eating or they would put me on appetite stimulating medications.
Because I was on peritoneal dialysis I was able to start working part-time. But it was very difficult to have any type of a life because I had to be attached to the dialysis machine every night for nine hours. Many mornings I would wake up sick from the dialysis, but I still had to be into work by nine in the morning. My doctors had decided that I was doing well enough to go forward with a kidney transplant, about 2 years from the time I originally got sick. We went forward with testing for a donor and plans for a transplant, I was even put on UNOS waitlist and had a pager. But the HUS reared its ugly head again and the transplant was canceled. I was heavily watched; meaning back to blood draws every day, and did not have to go on plasma aphaeresis again.
My doctors and I waited about six more months before trying to go forward with a transplant again. But unfortunately, the same thing happened again. So, we watched and waited. I tried to live as normal a life as I could. But many, many exceptions had to be made. One was camping. I was not allowed to do that anymore. Another was my doctors allowed me to drain the peritoneal fluid for one day so that I could go to Disneyland (so that my new boyfriend could propose to me, unknown to me) and ride the rides without getting sick.
I couldn’t go out at night as I had to be in bed, attached to my dialysis machine in time to get up in the morning and go to work. I didn’t know what size clothes to wear, as my stomach would grow throughout the day collecting more fluid until I could do dialysis at night. Towards the end of June in 2006 I contracted Peritonitis and had to be in the hospital for 3 days receiving antibiotics and morphine. My kidney transplant had been once again scheduled. I was so worried that my transplant would be canceled for the third time. I must have asked my doctors about 50 times if the Peritonitis would interfere with the transplant. They assured me it wouldn’t as long as I got better.
I was lucky enough to have a kidney transplant on July 18th, 2006. From start until then had been about four years. My donor was my older and only brother. So far it has been successful. I am on many medications and about half of the medications I am on are to counteract the side effects of my anti-rejection medications. One side effect of the anti-rejection medications that I am on is HUS. So my doctors monitor me very carefully and I am constantly on the lookout for symptoms. I also had to relearn about my body and what it is doing and how it is feeling. My husband and I (we got married two months after my transplant) have decided not to have children as the anti-rejection medication causes severe deformations to fetuses.
So far I am doing fine and trying to return to a normal life. My donated kidney will not last my lifetime, and I will be on dialysis fighting for my life once again. But that is a long way off. I am so grateful for the second chance at life that I have been given, as it is so precious. I thank all my doctors and all the nurses who I met and got to know through my illness. I hope that no one goes through what I have gone through.