The Whole Story

Welcome friends and family. I thought I would start a blog as an easier way to keep everyone updated on everything that is going on with our family. Particularly, to keep everyone updated as we learn more information on what is going on with my health. I will post on Facebook to let everyone know when there is a new entry. On the blog I feel like I can be more personal, and this way, only the people that want to see updates will see them!

I apologize as this first entry will probably be somewhat a novel, as I will try to recap the best I can to get everyone up to speed. As most of you know, I have been dealing with a lot of health issues the last couple of years, but to try to keep things simple, I will just update on what is most relevant. In December, 2010, I went to the doctor because I had horrible fatigue, my hair was falling out, and I kept getting bruises that didn't have any explanation. Other than that, I wasn't "sick" at that time. My doctor ordered some blood work to check for anemia and a few other things. I got a call from him that same evening to inform me that there was a major abnormality in the results. My white blood cell count came back dangerously low. In fact, out of the 5 types of white blood cells, the type called the neutrophils came back at a level of zero. The neutrophils are the cells that are responsible for fighting off infections in the body, and make up the highest percentage of the 5 types of white blood cells (WBC). This finding is EXTREMELY rare and dangerous. My doctor assumed that it was a lab error. He had me come in for a repeat blood test the next morning. Unfortunately, our fears were confirmed when the test results came back the same way the next day. To make a long story short, this started a 3 month cycle of having my blood drawn every Tuesday and Friday, visits to a hematologist/oncologist (which meant trips to the cancer center in the hospital), and TONS of testing. I had x-rays, CT scans, and tons and tons of blood tests done. The scariest part was not knowing if and when my WBC count was going to be good or bad, so I never knew if I got an infection if my body was going to be able to fight it. With a low neutrophil count, even usually minor, everyday bacterial infections can end up being fatal. Much to our dismay, all of the testing came back inconclusive. There was nothing to show WHY my neutrophil count (from now on I will refer to this as my ANC - absolute neutrophil count) was wiped out. At my last appointment with him, the hematologist said that it was a huge blessing as the majority of time when results like that come to him, his patients end up being diagnosed with cancer. While I was glad there was nothing more serious found, I was left with a very uneasy feeling (to put it lightly) about never knowing if or when it would ever happen again.

Now lets jump forward to today. In January, I got a pretty severe throat infection. The strep test and culture came back negative, but it was definitely bacterial because after 10 days of a nightmare sore throat, I finally got relief after 1 day of antibiotics. About 2 days after I finished my antibiotics, I caught influenza from Isabelle (despite being vaccinated) and was put on Tamiflu. Before I even took my last dose of Tamiflu, I was suffering with a whole different ailment - tons of abdominal pain, crippling lower back pain, I couldn't sleep from the pain...it was awful. I saw the doctor and was quickly diagnosed with a UTI and put on another antibiotic. Eight days later (Feb. 9th), I woke up feeling really really ill. I was weak and had a fever and just felt sick all over. I tried to take a shower but couldn't even stand up long enough. I tried to rest but as the day went on my fever just got higher and higher. This started to become more and more concerning as I was already on antibiotics, and about 2/3 of the way done with them already. When my fever hit 102.6, Luke took me to the ER. When we got there, we found out that my UTI had now turned into a full blown kidney infection, again, despite being on antibiotics. They decided to admit me to the hospital so that I could be put on IV antibiotics. Unfortunately, my body didn't respond to those antibiotics either, and I was still having fevers. The doctors were doing cultures of my urine to try to figure out exactly what bacteria was causing the infection so that they could attack it better. When the culture came back, my doctor said that it made things more complicated as there wasn't one single bacteria, but a whole bunch of different bacteria that was found. He switched me to a broader spectrum, very strong IV antibiotic. It was that same night that the doctor also talked to me and told me for the first time that my WBC count was really really low. He also examined me that same night (after telling him I had soreness in my upper abdomen), and discovered that my liver and spleen were both enlarged. He ordered an ultrasound for the next morning, and the enlargement was confirmed. Some good news started the next day, as the new antibiotic seemed to be working on my infection. The following day, when I spoke to the doctor again (my case had been switched over to a different, female doctor at this point), she said that since the antibiotic was working, that I should be able to go home that day, they just had to find a similar antibiotic in pill form that I could take at home. She said that I also needed to start seeing the hematologist that she was going to refer me to. After 3.5 days in the hospital at that point, I was elated at the idea of going home that day. Literally 10 minutes after she left the room, she informed me that she had spoken to an infectious disease specialist about my case. He had said that since I didn't respond to 2 different antibiotics, that it made things really complicated. Since they were the go-to antibiotics for kidney infections, AND since my WBC count was so low, that there wasn't anything else I could take other than the same IV antibiotic that I was already on. My doctor then said that there was a possibility of doing IV therapy at home, however the chance that my insurance would cover it was very slim, and then she said that it was also a 14 day course. So she pretty much had just told me that I would most likely be spending 2 more weeks in the hospital. I called Luke and was totally broken and sobbing. Then, a few hours later, to complete the roller coaster cycle of the day, someone came in and told me that my insurance had approved the request for home IV therapy, and I was going to be able to go home soon. However, I would need to have a PICC line put in for the administration of the antibiotics. The PICC line was put in that night. The whole process of getting it put in really freaked me out, but I just kept focusing on getting to go home to my kids. On Valentines day, after 5 days in the hospital, I was discharged home and started IV antibiotic therapy with the help of an amazing home health nurse and my amazing husband who learned how to do everything himself and did a great job.

Now this is where everyone who has been following on Facebook needs to pay attention because things have changed slightly since my last posts. Since my discharge from the hospital, I have been resting at home, but have not been feeling well. My blood pressure for some reason has gone through the roof (usually it's great), and I have been dealing with pinched nerve-like pain in my neck and shoulders. On Monday, Luke was on the phone with the doctor's office trying to get me in for my pain, and the person on the phone told him my test results had come in and that I tested positive for Lupus and that they were referring me to a rheumatologist. Needless to say, our heads were spinning with this information. While we weren't exactly surprised, the news was a HUGE blow. I couldn't see my doctor that day, but did get an appointment for the following day. On Tuesday, I went in to see her. Needless to say, the first thing we did was ask about the Lupus diagnosis, and she said that it's not 100% for sure until I see the rheumatologist. Ummm...well THAT makes a bit of a difference to me! Note that our doctor is awesome and she had put that same thing in her notes, the person on the phone just apparently failed to read the ENTIRE note to Luke. And the roller coaster continues to roll....

Thursday was another eventful day for my emotions. I got a call in the morning from the doctor's office letting me know that my doctor had spoken to the hematologist (who had reviewed my charts in anticipation of my upcoming appt. this Wednesday, the 6th), and that she had orders for my home health nurse to take blood work from my PICC line, and that he also wanted me scheduled for a ultrasound on my liver and spleen (current lab tests had shown that my liver is still a mess). That night, my wonderful home health nurse came by with 15 TUBES for the different tests for my blood. I found out then that all of the tests that the hematologist/oncologist had requested were all highly specialized tests and that all 10 of them were oncology (cancer)-related tests, including tests for staging current leukemia. Needless to say, this was pretty upsetting. Not only that, but I KNOW that my liver and spleen are still enlarged as I have still been having pain and tenderness in my upper abdomen. To make matters worse, my PICC line decided that it wasn't going to give my nurse ANY blood at all. I was able to get the PICC removed that night, which was very nice, but that meant I had to go to a lab the next morning to be stuck once again. Friday morning I gave up 15 tubes of blood. Again, I meet with the hematologist/oncologist for the first time this coming Wednesday.

So, now Saturday night, I sit here, updating you, trying to keep calm, holding onto my faith and trying to be courageous. At this point we are literally taking everything day by day. My emotions can turn on a dime from feeling courage one moment to being in tears the next. Ethan even said to me one night as I was putting him to bed, "Mommy, I don't want you to die." I just about lost it. He is only 4 years old. Every time I think of that I get choked up and want to cry. I just want to be a mom to my kids, a wife to my husband...I just want a "normal" life. I have been praying constantly, reaching out to the One who knows my heart the most, and trying to find comfort in His promises.

I want to thank everyone who got this far reading all of this. I can't say thank you enough to everyone who has reached out and helped us. Whether through a Facebook post or message, helping with the kids, a meal, a gift, a gift card, flowers, a visit, a phone call...when it feels like our hearts are breaking you have been there to fill them up again with your love and kindness. And at this point, the biggest thing to me is you have made me feel so much less alone in this journey, and that means everything to me. So, while I am terribly behind on getting out thank you notes, please know how much I truly appreciate each and every one of you.

So that's it for tonight. Thanks again for reading, and I will keep you posted throughout the week...

Love,

Lindsay