A Personal Journey To Find A Cure

Terry asked me to continue this, and what's interesting is I don't remember a lot about when my platelets were low and I was starting to bruise.  I do remember the night Terry took me to the hospital and Dr. Moran did the bone marrow test for leukemia.  I was told to be as still as possible-not to look at the needle- and to help calm me,  Dr. Moran spoke to me in Spanish.  Mighty professional of him, I must say.    I remember everyone breathing a sigh of relief that the results showed I did not have leukemia and then more tests were ordered.

Dr. Moran pulsed me and put me on a "wonderful" drug called prednisone to try to help raise the platelets.  He then looked at what food was in my room and said "you had better start limiting sweets like that."  Little did I know he really meant it.  80 mgs of prednisone later and the walls were looking pretty good to eat.  A few days later, after my platelets were hovering around 30,000 (normal is 150,000) Dr. Moran agreed to let me out of the hospital and set up an appointment with a local rheumatologist .

I wasn't sleeping at all, I was trying to teach, and my platelets were falling even while I was on the prednisone.  Terry can testify that our house has  never been more clean than when I was on so much prednisone and couldn't sleep, but I was depressed.

I met with the rheumatologist who took a complete medical history and he told me that he believed I had systemic lupus.  I am pretty sure he said lots more after that, but that's all I heard, and since I had never heard of it before, I thought I was going to die.  He ordered blood work and as soon as I left the office I called Terry, told him what I had found out, and then called my dad and just started crying (which sounds really pathetic now).

Two weeks later, I had another appointment with my rheumatologist, who told me that I did indeed have SLE.  I consider myself lucky because there are so many other people fighting for a diagnosis.  Unfortunately during this time my platelets continued to fall.

I remember being tired. I remember dreading the phone calls from my Dad or from the doctor's office saying it was time to get "pulsed". Many times I had to go to the Island Health Pavilion right before work and have blood drawn. The lab tech was wonderful- always had a smile on her face at 7:30 A.M.- until she saw the platelet count and all I would hear is "Oh Laurel, Laurel, Laurel."

There is a time when you just get sick of it and my family and I got to that point. We all sat down, discussed our options, and decided that a splenectomy was the way to go. We met with Dr. Sisily (what a lifesaver) and he agreed to do the surgery.

I have to admit that I was nervous. There was the slightest chance it wasn't going to work, but the odds were in my favor. I showed up to the hospital and to my wonder, my Aunt Carol from Fairfax, Virginia, had come to be with me (talk about a boost in confidence when you have such a wonderful nurse at your side!).

I remember waking up after the surgery and not being able to move very well. There was a tube that I believe was in my nose, showing horribly colored body fluids coming from it. Whenever a visitor came by I wanted someone to cover up the tube as best he could.

  My family was a WONDERFUL support to me while I was in the hospital. I tried my best to be a good "host", but very often I fell asleep and they were stuck looking at the walls. I remember Dr. Sisley coming by and checking on me and informing everyone that it had been quite a task finding my spleen. In fact, someone said "sawed her in half" and that's all I wanted to know. I was handed an interesting contraption in which I was supposed to blow air to try and hold a small plastic ball afloat for as long as possible.  I was told to do this at least three times a day. "How hard can that be?", I remember thinking. Very hard! Especially if you have been sawed in half.

Soon I was given the orders by Dr. Sisley to try to walk a little bit. I remember his saying that the more I walked, the faster I could get out of the hospital. That's all that he had to say. At first it was a bit difficult, but I was soon lapping the floor and making records with my swift I.V. machine at my side. I remember Dr. Segerberg, Dr. Sisley's partner at the time, having to chase me down for rounds. I just wanted to go home.

Finally I was released and I am proud to say that as of today I have about 400,000 platelets. I also have an ugly scar, but I don't plan on doing any belly dancing any time soon, so I am not too worried about it.

Terry and I had a wonderful wedding on November 14, 1998. The stress from everything was a bit much, but I had people on my side trying to help and make sure I got enough rest.

In November of 1999, we found out that I was pregnant. Usually this is something that everyone rejoices about, but we knew that both of our families were going to be concerned. My lupus was not in remission and most studies and experts suggest that a woman should be in remission before getting pregnant.

I was referred to Dr. Margaret Goodman, another lifesaver of mine who laid everything out for me and took great care of Terry, "whozit" (our nickname for the baby) and me. At first everything was going great. I was tired, exhausted even, but I believe that most women are like that during pregnancy. Then I began to get really bad joint pain and horrible ulcers in my mouth that made it impossible to eat. Instead of gaining weight, I was losing it. I was miserable. I also had to make very regular visits to Dr. Goodman so she could monitor my blood pressure, kidney function and good ol' "whozit".

In June of 2000 I was the last patient to see Dr. Goodman for the day. I was put on the fetal monitor (which I loved listening to) and then someone took my blood pressure. A few minutes later Dr. Goodman came in, checked me out, and then just asked me to stay there for a bit. She never once hinted that something was wrong. In the meantime, she snuck off and called my husband as well as my father to let them know that my blood pressure was way too high (I can't remember the numbers) and she wanted to send me to Memorial Hospital in Savannah. About ten minutes later Dr. Goodman came back into my room and told me that I had two choices: ride in an ambulance to Memorial or have my husband drive me. I felt like things were totally out of my control and I was scared. She helped calmed me down as much as possible and a few hours later Terry drove me to Savannah. Little did I know I was going to be there until the end of July.

I was admitted and put on the Labor and Delivery floor. The nurses were wonderful and I always had a parade of doctors coming in my room. Most of them were neophytes and it was like I was on show- "Let's all look at the pregnant lupus patient." I was given an absolutely horrid drug called magnesium sulfate. I felt bloated and too hot the whole time I took this. Of course, everyone else in the room was freezing, but it was my room and they could wear a parka.

Eating was another adventure. None of my food could be salted (I feel for everyone who has to be on a low to no sodium diet) and there were many times I could not keep my food down. My blood pressure was not getting any better and I was not sleeping very well at all. I was uncomfortable, and even though I had visitors and phone calls, I was becoming depressed. I wanted to go home, I wanted to be with people and the walls were closing in on me.

My veins began to collapse from all of the I.V. drips and it was always a painful adventure when a nurse had to start a new line. They meant well, but there are only so many times a person can be stuck with a sharp needle and hear "there we go...oh wait, nope. That one's collapsing."

Finally the doctors said that "whozit's" lungs were mature enough for him/her to be born and they scheduled July 8 th as the day we would welcome a new Mergl to Georgia. I was moved to a delivery room the night before and was told to get a good night's sleep. That didn't happen.

Around 7:30AM the doctors began to induce labor and I was told to just get comfortable-it was going to be a while. Terry was there, hoping to grab a shower some time before his child arrived and then to my surprise my mom showed up. Things seemed to be fairly 'routine' until the pain began to get worse. I asked for pain medicine (I know...I'm a whimp. I'm proud of all of you who did it without.) and the anesthesiologist was called.   H e didn't come and the pain worsened. The doctors were worried about "whozit's" heart rate because it was dropping and things seemed to go downhill from there. I don't remember a lot of this part- I do remember someone saying "stat" and then the nurses pushing my bed into the O.R. where I was knocked out and they delivered the baby in no time flat. I am very happy to report that Christopher James Mergl scored a 9.9 on his APGAR and weighed in at 5lbs and 1 ounce. Pretty good for someone thrown into the world 5 weeks early.

While I was in the hospital I gained over 35 pounds. In hindsight I know this was due to the medication and it put horrible stress on my body. I couldn't breathe and lying flat as impossible. Many times the nurses wanted me to lay flat on one side to see if they could get my blood pressure down, but that caused me to fight for breath.

After Christopher was born, my blood pressure did not improve and breathing was still a chore. No one seemed to know what was wrong with me and the more people poked, the more frustrated and depressed I became. Christopher got to go home before I did and I would receive phone calls from St. Simons and hear his crying in the background or hear people making a fuss over him and my insides ached to be there with him and my family.

Finally one day the rheumatologist who had been taking care of me at Memorial said that I could go home. Even though I felt horrible and moving caused me to lose my breath, I got dressed and was bound and determined that I was going home. No one was going to stop me- except my husband. I hated him then, but he saved my life. I believe this is what happened because I was waiting patiently in my room with my bag packed while he was doing this. He called my father and told him that I was not doing well. Dad informed my mom that he was going to Savannah (she wasn't allowed to come). When he arrived he saw that I was dressed, but I was hunched over. The only way I can explain it is that was the best way for me to breathe. If you heard me speak, it sounded as if I had lost my voice and then I would cough. The next thing I knew my dad was making his presence known in a very calm, but assertive way and I was taken to another floor. A lung specialist came in, talked to Dad and Terry and then I was sent to the ICU. What has been explained to me is that I was basically drowning in fluid.

The nurses in the ICU were wonderful but I wasn't much help. When they stood me up I almost fainted, but they dressed me, got I.V. lines started and I was given something to sleep. I remember Terry and Dad coming in to say goodnight and I felt like crying- I believe I did cry- because I was terrified. Terry later told me that the rheumatologist had painted a very dim picture for him about my recovery. (Little did he know I am very stubborn and have lots to accomplish.)

I remember waking up the next morning feeling 50% better and then feeling guilty that I was in ICU. There were people in there who were very ill and I felt like I was taking up space. A day later I was sent to a room but then the doctor wasn't happy with my blood pressure and lungs so he sent me to the CCU. I was very depressed and very tired of the hospital. Finally the doctor agreed to release me and I got dressed. The drive home was like freedom. I still didn't feel like " Laurel " and I was developing the butterfly rash on my face, but Dorothy was right- there's no place like home.

My blood pressure was still high so I was on two types of medication for that as well as a diuretic. I went to see my rheumatologist in Brunswick , who ran blood tests on me and he didn't like what he saw. He was very concerned about kidney involvement and he brought up treating me with chemotherapy.

I absolutely did not want to do it. I had to be talked into it. I had returned to school to teach and I wasn't sure what this was going to mean for me job or family wise. Terry and I sat down with my parents, talked about it, and we decided that it was for the best to try it.

My first round of chemo was not what I expected. I taught the whole day and then showed up to the hospital. I entered the "chemo room" and instantly felt out of place. All the people around me had cancer and I felt like I had no business being there.

The nurse started the I.V. line and per orders things moved very slowly. I had arrived at 3:30 and I didn't get home until almost 1AM. I didn't feel sick at first, but the next day I felt horrible (it was a Saturday, so I got to rest). That Monday I went to work, but my hair had begun to fall out and I was very shocked by that.

That weekend my mom and I went Jacksonville and ordered a wig. The following weekend I went to a local hairdresser who cut my hair very, very short. The wig was a lifesaver, even though it seems very vain.

I endured chemo for close to two years. Finally enough was enough. My rheumatologist wanted me to continue, but I was done. I needed a break. I was tired of being sick and everything was centered on my having lupus. My rheumatologist informed me that he could no longer treat me since I was being stubborn, and I accepted that.

 

I'll continue later......