Good evening, friends! First of all, I have to say that I am SO sorry that it has taken me so long to write an update. Spring is notoriously crazy and busy around the Hoyhtya household, and with me not knowing how I'll feel on a day to day basis, it makes things even more crazy. Fortunately, I have had more good days than bad the past couple of weeks. This has really been a huge blessing since I am the party planner of the household (and I tend to like to throw a party!) and Isabelle's birthday party was the 6th and Aunna's is a slumber party this coming Friday (pray for me! ;).
Anyway, I know I left you all hanging, and again I apologize. Besides life being crazy, I just didn't get what I was hoping to get out of the rheumatologist (as in, a diagnosis!), and I needed time to process and regroup. I'm trying to figure out how to explain this all in a way that it will make sense. We know that the symptoms that I have been having and the particular organ involvement/blood irregularities are all signs of Lupus. There is a list of 11 diagnostic criteria that is followed in order to identify that a person has Lupus. You have to have at least 4 out of the 11 criteria to be diagnosed. Well, for some reason, the rheumatologist that I was seeing said that he wasn't going to take into account any of my labs from the hospital or directly after, that he would only diagnose based on my labs that were done at my original appointment with him. This really boggled our minds as we knew I was coming out of a flare and that my labs of course would most likely be normal, or at least close to it, and of course they were. This doctor gave me a copy of the diagnostic criteria at my original appointment. It specifically says that you have to have these very specific abnormal labs, at least twice, to be diagnosed, which I have had those same specific EXTREMELY abnormal labs way more than twice! So anyway, since my labs were normal the day that he saw me, he said he couldn't diagnose me with Lupus, therefor couldn't treat me for Lupus, and sent me on my way with only a diagnosis of Fibromyalgia which he admitted was not the only thing going on (OBVIOUSLY). Please don't get me wrong here, it's not like I WANT to have Lupus. But upon going over the diagnostic criteria, it seemed so obvious to us that it was most likely the culprit here! Which was very frustrating because Lupus is very serious and I shouldn't be sitting here untreated, especially when I have major organs involved (like many with Lupus do)! Whew, I think you can probably feel my frustration at this point...
SO anyway, I had an appointment with my primary doctor last Thursday to have all of my labs checked again (blood count, liver function, peripheral smear [for abnormal cancer cells, have to keep checking I guess], B12 level, iron level, folate level, and possibly more, I can't remember!), and to talk about my rheum. appt. Well, I came prepared with the information that he gave me and my doctor and I went over it together. She thought it was ridiculous that he didn't review or consider all of my previous abnormal labs. As we went over the diagnostic criteria together for Lupus, I have 7 out of the 11 criteria (remember you need FOUR to be diagnosed). She then gave me a diagnosis of Lupus herself, HOWEVER, we aren't starting any treatment until I see a rheumatologist that knows her stuff! About a month ago, we had discussed a stellar rheumatologist in Oklahoma City that specializes in Lupus. However, I already had my appointment set with this other guy (who was the only rheum. in Tulsa in our insurance network, that's why I had to see HIM), so we agreed to give this guy a try first. Well, been there, done that, and now I'm being referred to this other woman that I'm REALLY hoping will take me. She works at the research hospital and you have to be diagnosed with Lupus already, then referred, apply, and be accepted! Everything has been set in motion so PRAY that she accepts me as a patient, because I really need to see an excellent specialist to get me headed the right direction for treatment!
Now on to more news, I had my appointment with the GI specialist this past Friday (yes, two days in a row of doctors!). She was super nice and knowledgeable, hooray! My doctor sent me to her since my liver has been enlarged and my enzymes elevated, because of my B12, iron and folate deficiencies, as well as some other symptoms. After going over everything, she wanted me to have a CAT scan of my liver, as well as an endoscopy with biopsies. My CAT scan is tomorrow already at 2:30! They said to expect to be there until 4:00, yikes. I also can't have any solid foods after 10:30 tomorrow. My endoscopy is scheduled for May 2nd at 10:30, and the doctor said to expect to be at the hospital for about 3 hours. While they are checking things out in there, they are also going to take some biopsies for testing. I then have my follow up appointment on May 16th.
Whew, this has turned into a novel, but now you are all up to speed! If you could continue to remember these days and tests coming up in your prayers, as well as pray that I am accepted by the Lupus specialist in OKC, I would greatly appreciate it! Thank you so much for your continued prayers and support!
Tuesday, April 16, 2013
Wednesday, March 27, 2013
Rheum. Appt. Update
Good evening friends. Sorry it has taken me so long to get back here today to post an update! First of all, last night I didn't sleep well at all! I felt so yucky, couldn't stop getting up to go to the bathroom, couldn't shut my brain off, etc. Then once I finally fell asleep, I woke up several times drenched in sweat (this has been going on for months off and on), and then ultimately woke up at 5:30 with a migraine. I got up to get something to drink and take an Imitrex, but then I never got back to sleep! As the early morning went on I also realized that my throat was sore, my stomach was nasty and my whole body hurt. Last night my temp was 99.7 but never got higher than that. I honestly didn't know if I could muster up the strength to make it to my appointment! But I have been waiting for over a month for this, so I had to do it! It's always ironic to me whenever someone feels the sickest is of course when they DON'T want to go to the doctor because they feel too horrible to move! I wish doctors still made house calls! Doesn't that just make sense?
Anyway, we got to the doctor's office at about 10:20. The doctor was very nice. He walked us through the different possibilities of what we could be dealing with. He asked several questions and did an exam. After that he said that as of today he is certain that I have fibromyalgia, but that fibromyalgia can go hand in hand with a lot of other things as well, and that is certainly not the only thing going on here. We then talked a lot about Lupus and the diagnostic criteria and where I stand with that. I already fill several of the criteria and the rest are shown through lab testing. He ordered several tests and set me up to come back next Wednesday morning to discuss the results and decide if I indeed have Lupus or not. He said that it is extremely important that we get this diagnosis correct, because if I DO have Lupus, one of the treatments is immune-suppresion therapy, which has big risks when I already am dealing with low white blood cell counts. So he wants to be VERY sure before he gives me that diagnosis and starts a treatment plan. SO, in terms of testing today, I got to have 15 MORE TUBES of blood drawn (!!!), a urine test, and x-rays on my chest, knees and hips.
We walked out of the office at 1:30, 3 HOURS later! Yikes! By that time, I was starving, my head was pounding (again), and I was exhausted. As soon as I got home, I threw myself into bed and slept for 4 hours! This seems to be a trend as I did the same thing after my hematology appointment. I guess these appointments just exhaust me! After I woke up I was still feeling crummy though, so we'll see what's going on. My throat is sore, so I don't know if I'm just getting a bad cold (with bad body aches) or what. I'll be praying for that and nothing worse!
I also wanted to mention that I have an appointment to see a GI specialist on April 11th. Since I am so anemic, my doctor thinks that I could possibly be having an absorption issue. She also thinks I am showing symptoms of an ulcer, too. I've had stomach issues since childhood and am supposed to be careful about taking anti-inflammatory drugs, and when I was in the hospital I HAD to have them, so I could have developed an ulcer from that (plus the stress!!!). It's been a few years since I've checked in with a GI doctor, so all in all, with everything else going on, it will be good to have all of that checked out too.
So, that's it for now. Before I go, I want to give a shout out and a big thank you to our friend Bekah for taking such wonderful care of Ethan today! He LOVES his time with you and Will! :) I will let you all know what we find out next Wednesday (the 3rd). If you wouldn't mind, please pray that whatever this yuckiness is that I am currently feeling gets better soon! Thanks so much!
Anyway, we got to the doctor's office at about 10:20. The doctor was very nice. He walked us through the different possibilities of what we could be dealing with. He asked several questions and did an exam. After that he said that as of today he is certain that I have fibromyalgia, but that fibromyalgia can go hand in hand with a lot of other things as well, and that is certainly not the only thing going on here. We then talked a lot about Lupus and the diagnostic criteria and where I stand with that. I already fill several of the criteria and the rest are shown through lab testing. He ordered several tests and set me up to come back next Wednesday morning to discuss the results and decide if I indeed have Lupus or not. He said that it is extremely important that we get this diagnosis correct, because if I DO have Lupus, one of the treatments is immune-suppresion therapy, which has big risks when I already am dealing with low white blood cell counts. So he wants to be VERY sure before he gives me that diagnosis and starts a treatment plan. SO, in terms of testing today, I got to have 15 MORE TUBES of blood drawn (!!!), a urine test, and x-rays on my chest, knees and hips.
We walked out of the office at 1:30, 3 HOURS later! Yikes! By that time, I was starving, my head was pounding (again), and I was exhausted. As soon as I got home, I threw myself into bed and slept for 4 hours! This seems to be a trend as I did the same thing after my hematology appointment. I guess these appointments just exhaust me! After I woke up I was still feeling crummy though, so we'll see what's going on. My throat is sore, so I don't know if I'm just getting a bad cold (with bad body aches) or what. I'll be praying for that and nothing worse!
I also wanted to mention that I have an appointment to see a GI specialist on April 11th. Since I am so anemic, my doctor thinks that I could possibly be having an absorption issue. She also thinks I am showing symptoms of an ulcer, too. I've had stomach issues since childhood and am supposed to be careful about taking anti-inflammatory drugs, and when I was in the hospital I HAD to have them, so I could have developed an ulcer from that (plus the stress!!!). It's been a few years since I've checked in with a GI doctor, so all in all, with everything else going on, it will be good to have all of that checked out too.
So, that's it for now. Before I go, I want to give a shout out and a big thank you to our friend Bekah for taking such wonderful care of Ethan today! He LOVES his time with you and Will! :) I will let you all know what we find out next Wednesday (the 3rd). If you wouldn't mind, please pray that whatever this yuckiness is that I am currently feeling gets better soon! Thanks so much!
Tuesday, March 26, 2013
Rheumatology Appt. Tomorrow
Hi everyone. Tomorrow is FINALLY my long awaited rheumatology appointment. My appointment is at 10:30 and the paperwork says to expect to be there for 2-2.5 hours. Please pray that I get some answers. We know that the testing so far has pointed to Lupus, but it all depends on what this doctor thinks. I'm feeling so weary right now just thinking about it. I JUST went through this whole process with my uterine issues for almost a year, and it is exhausting. It was an endless cycle of scan, appointment, wait, scan, appointment, wait....all while in pain daily. Finally, a second opinion lead to the surgery that I ultimately needed to relieve me from the pain I had been having. I just had my hysterectomy in November. I need a break! I also went through this whole thing with my blood cells and infections just over two years ago, and saw a specialist then and went through the same cycle of non-stop testing and appointments with no answers. Now it's gotten even more serious and I NEED an answer so that we can DO something about it. So please pray that this long drawn out process will be fruitful!
Sorry for being a downer. I'm just having one of those days. My kidneys have been hurting and my liver is still hurting. My kidney hurt so bad that it was hard to sleep last night. I woke up this morning feeling achy all over and just plain sick. So far no fever, but I keep feeling like it's coming. And if it does, I have to go to the ER. And it means infection again. And probably a hospital stay. And that I'm not getting better. I don't even want to think about it. If you could remember me in your prayers, I'd appreciate it. Please pray for a successful appointment tomorrow that I can feel positive about. And please pray for my spirits to be lifted as I go through this journey. Thanks everyone.
Sorry for being a downer. I'm just having one of those days. My kidneys have been hurting and my liver is still hurting. My kidney hurt so bad that it was hard to sleep last night. I woke up this morning feeling achy all over and just plain sick. So far no fever, but I keep feeling like it's coming. And if it does, I have to go to the ER. And it means infection again. And probably a hospital stay. And that I'm not getting better. I don't even want to think about it. If you could remember me in your prayers, I'd appreciate it. Please pray for a successful appointment tomorrow that I can feel positive about. And please pray for my spirits to be lifted as I go through this journey. Thanks everyone.
Tuesday, March 12, 2013
Appointment/Ultrasound Results
This morning I met with my primary doctor to basically just have another check-in about everything that's going on. First of all, my blood pressure is slightly better, but not totally, so she's upping the new blood pressure med from half a pill twice a day to a whole pill twice a day. We still don't know what caused the sudden huge jump in my BP. I'd love to not have to be on BP meds, so hopefully we'll figure out the cause sometime soon and be able to eradicate it.
Second, as soon as I got there I said that I have been having symptoms of another UTI. I knew if I had one this would pretty much be a nightmare scenario, but I was 99.9% sure that I did. AND, sure enough, I have another UTI. I just finished my IV antibiotic therapy on Feb. 28th and I have one again already. I am going to need some MAJOR prayers from all of my prayer warriors regarding this. Since a UTI is a bacterial infection, I had to have my blood drawn to check my white blood cell count to see if my number is good enough to fight it or not. I should hear back soon. If my number is not good, I will be back in the hospital, if my number is REALLY bad, an infection like this could be life-threatening. THIS is why it is SO important that I know my body and catch these things as fast as possible! Since we did, and assuming for now that my WBC count is normal, my doctor is putting me on the closest thing to the IV antibiotics that I was on before that is in a pill form that she could find. She gave me the highest dose possible and then added 3 extra days onto the course. It's going to be brutal on my GI tract, so lots of probiotics. And I'm to be super vigilant about my symptoms...if I have ANY back pain or ANY fever, off to the ER I go. Yes, this is my life now. Hopefully it won't be this way forever...please pray for this.
Third, we went over the results of my ultrasound. Overall, things turned out pretty much how I expected it to. My liver and spleen were both still enlarged (not good), and there was a cyst on my right ovary (so now I get to have a follow up on that too, yay). Everything else they scanned looked fine though, including my kidneys, so that was good news.
So I think that's it for now. Please remember me in your prayers and pray that this new infection goes away much more easily this time.
OH, I DO need to mention that it is my sweet Isabelle's 6th birthday today! I actually made it to her school to share lunch with her today, and I'm hoping to make it out for dinner too! These are my first non-doctor related outings since I went into the hospital! Can't miss these precious moments! Happy Birthday, beautiful Isabelle!
Ok, NOW I'm done. I will make sure to keep you all posted, thanks everyone.
Second, as soon as I got there I said that I have been having symptoms of another UTI. I knew if I had one this would pretty much be a nightmare scenario, but I was 99.9% sure that I did. AND, sure enough, I have another UTI. I just finished my IV antibiotic therapy on Feb. 28th and I have one again already. I am going to need some MAJOR prayers from all of my prayer warriors regarding this. Since a UTI is a bacterial infection, I had to have my blood drawn to check my white blood cell count to see if my number is good enough to fight it or not. I should hear back soon. If my number is not good, I will be back in the hospital, if my number is REALLY bad, an infection like this could be life-threatening. THIS is why it is SO important that I know my body and catch these things as fast as possible! Since we did, and assuming for now that my WBC count is normal, my doctor is putting me on the closest thing to the IV antibiotics that I was on before that is in a pill form that she could find. She gave me the highest dose possible and then added 3 extra days onto the course. It's going to be brutal on my GI tract, so lots of probiotics. And I'm to be super vigilant about my symptoms...if I have ANY back pain or ANY fever, off to the ER I go. Yes, this is my life now. Hopefully it won't be this way forever...please pray for this.
Third, we went over the results of my ultrasound. Overall, things turned out pretty much how I expected it to. My liver and spleen were both still enlarged (not good), and there was a cyst on my right ovary (so now I get to have a follow up on that too, yay). Everything else they scanned looked fine though, including my kidneys, so that was good news.
So I think that's it for now. Please remember me in your prayers and pray that this new infection goes away much more easily this time.
OH, I DO need to mention that it is my sweet Isabelle's 6th birthday today! I actually made it to her school to share lunch with her today, and I'm hoping to make it out for dinner too! These are my first non-doctor related outings since I went into the hospital! Can't miss these precious moments! Happy Birthday, beautiful Isabelle!
Ok, NOW I'm done. I will make sure to keep you all posted, thanks everyone.
Thursday, March 7, 2013
Ultrasound
Thank you everyone for your prayers for my ultrasound today! I managed to get through the morning without getting dizzy, even though I couldn't have anything to eat or drink after midnight. I must say though, my stomach was killing me when I woke up and didn't eat (my body is very trained to eat breakfast right when I get up)!
The ultrasound was painful, as I expected, which pretty much confirms that there are still issues going on in my organs. The tech scanned my liver, spleen, pancreas, aorta, bladder, ovaries (no uterus anymore to scan!), and where my gallbladder used to be (nope, I don't have that anymore either!). I have never had so many things looked at during an ultrasound. By the end I was completely covered in gel! Fun fun. I have an appointment with my primary care doctor on Tuesday, so I'm guessing that we will go over everything then.
I want to say a special thank you to our friends Liz & Bryan for letting us drop the kids off at their house as the sun was still rising this morning, for getting our girls off to school, and for watching Ethan so Luke could be at the scan with me! We have amazing friends!
The ultrasound was painful, as I expected, which pretty much confirms that there are still issues going on in my organs. The tech scanned my liver, spleen, pancreas, aorta, bladder, ovaries (no uterus anymore to scan!), and where my gallbladder used to be (nope, I don't have that anymore either!). I have never had so many things looked at during an ultrasound. By the end I was completely covered in gel! Fun fun. I have an appointment with my primary care doctor on Tuesday, so I'm guessing that we will go over everything then.
I want to say a special thank you to our friends Liz & Bryan for letting us drop the kids off at their house as the sun was still rising this morning, for getting our girls off to school, and for watching Ethan so Luke could be at the scan with me! We have amazing friends!
Wednesday, March 6, 2013
Appointment Update
Well, today was an interesting day, to say the least. I had a hard time falling and staying asleep last night, just as I had pretty much expected. This morning when I first woke up I seemed to be doing ok. I ate some cereal, did the girls' hair, and kissed them off to school. Then I got in the shower and was doing ok at first, but all of a sudden I felt a weird sensation when I was trying to breathe. A huge dizzy spell came over me, and I felt really weak and my legs were shaking. I sat on the floor of the shower and bent my head forward, but it wasn't helping very much. Then, of course, from being so dizzy, I also started feeling like I was going to throw up. I barely made it the few feet over to the toilet and collapsed on the floor. I wasn't totally out but was very close. I just sat there with my forehead on the cool wall for several minutes, trying to take really deep breaths. I was finally able to get up and go lay down in our bed. I looked in the mirror and I was pale as a ghost. I had nothing in me what-so-ever and my legs and hands were still shaking. I gave up on being "ready" for the day, and about 20 minutes later I left the house with wet hair and not one bit of makeup on for my appointment.
So here is the gist of what we found out today. I DO NOT HAVE CANCER!!! It has now been ruled out and I am SO SO relieved! My WBC counts also seem to have rebounded for the time being, so this means as long as I'm feeling up to it, I can be around people more (I especially miss church!!!). The only thing that he found was that I am VERY anemic (well, that explains this morning). I have severe deficiencies in vitamin B12, iron, and folate (folic acid). What kind of bothers me, is that the cause is of it wasn't really pinned down. =/ The doctor agreed along the lines of Lupus/autoimmune disease, but said he couldn't speculate much more than that since that's not his specialty. Unfortunately, my appointment with the rheumetologist isn't until the 27th, so that means more waiting...=( In the meantime, I have to start giving myself vitamin B12 injections every day, and also got prescriptions for iron and folate.
As we were getting ready to leave the doctor's office, I was standing at the desk, scheduling my follow up appointment, when I started to get dizzy all over again and almost passed out! I had to excuse myself and go sit down and Luke said I was super white again. Luke ended up wheeling me out to our car in a wheel chair. When we got home, I went straight to bed and my body just collapsed into it. I fell asleep in about one second and slept for 4 hours!
So all in all, it has been a very interesting day. Thank you so much to everyone for your prayers, and I will keep you posted any time there is news to report. Oh yes, and I have my super long ultrasound early tomorrow morning, so if you could pray for that and pray that I have more strength for that tomorrow, that would be great. I found out that they are doing it on the entire abdomen, and that is why I have to fast and why it's going to take an hour. I will let you all know when I get the results. Have a good night everyone.
So here is the gist of what we found out today. I DO NOT HAVE CANCER!!! It has now been ruled out and I am SO SO relieved! My WBC counts also seem to have rebounded for the time being, so this means as long as I'm feeling up to it, I can be around people more (I especially miss church!!!). The only thing that he found was that I am VERY anemic (well, that explains this morning). I have severe deficiencies in vitamin B12, iron, and folate (folic acid). What kind of bothers me, is that the cause is of it wasn't really pinned down. =/ The doctor agreed along the lines of Lupus/autoimmune disease, but said he couldn't speculate much more than that since that's not his specialty. Unfortunately, my appointment with the rheumetologist isn't until the 27th, so that means more waiting...=( In the meantime, I have to start giving myself vitamin B12 injections every day, and also got prescriptions for iron and folate.
As we were getting ready to leave the doctor's office, I was standing at the desk, scheduling my follow up appointment, when I started to get dizzy all over again and almost passed out! I had to excuse myself and go sit down and Luke said I was super white again. Luke ended up wheeling me out to our car in a wheel chair. When we got home, I went straight to bed and my body just collapsed into it. I fell asleep in about one second and slept for 4 hours!
So all in all, it has been a very interesting day. Thank you so much to everyone for your prayers, and I will keep you posted any time there is news to report. Oh yes, and I have my super long ultrasound early tomorrow morning, so if you could pray for that and pray that I have more strength for that tomorrow, that would be great. I found out that they are doing it on the entire abdomen, and that is why I have to fast and why it's going to take an hour. I will let you all know when I get the results. Have a good night everyone.
Tuesday, March 5, 2013
Hematologist/Oncologist Appointment Tomorrow
Good evening everyone. I wanted to ask to please pray for me for a restful night's sleep in anticipation of my appointment with the hematologist/oncologist tomorrow. Also, if you could pray that my appointment goes well and for me to be strong, I would really appreciate it. The appointment is in the Cancer Center of the hospital, which is always a nerve-wracking place to visit. I am supposed to be there at 10:00.
I also got a call today letting me know that my ultrasound of my liver and spleen is going to be Thursday morning at 7:30. I am not supposed to eat or drink anything after midnight, and they said to expect the scan to last an hour. I have never heard of fasting before an ultrasound OR one taking so long. I'm not really looking forward to it as I have been consistently having pain and fullness in my upper abdomen, and it is painful when they do the scan. So if you could pray for this as well, that would be wonderful.
I really have no idea how tomorrow morning will go...I'm not sure if I will find out anything, if there will be more testing, if he already knows what's going on or doesn't yet, etc. I'm really scared that he is going to want a bone marrow biopsy and aspiration, but I'm trying not to worry about it until I know for sure. I want to say a special thank you to our friend Bekah for watching Ethan while Luke and I go to the appointment. I will update tomorrow at some point. Good night, and thank you for your prayers.
I also got a call today letting me know that my ultrasound of my liver and spleen is going to be Thursday morning at 7:30. I am not supposed to eat or drink anything after midnight, and they said to expect the scan to last an hour. I have never heard of fasting before an ultrasound OR one taking so long. I'm not really looking forward to it as I have been consistently having pain and fullness in my upper abdomen, and it is painful when they do the scan. So if you could pray for this as well, that would be wonderful.
I really have no idea how tomorrow morning will go...I'm not sure if I will find out anything, if there will be more testing, if he already knows what's going on or doesn't yet, etc. I'm really scared that he is going to want a bone marrow biopsy and aspiration, but I'm trying not to worry about it until I know for sure. I want to say a special thank you to our friend Bekah for watching Ethan while Luke and I go to the appointment. I will update tomorrow at some point. Good night, and thank you for your prayers.
Saturday, March 2, 2013
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
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
Subscribe to:
Posts (Atom)