New Experiences/ Medical Update

The last 2 weeks in May were a little hairy, to say the least. Yet God so marvelously provided, I simply can't help sharing how good He is!
April 19th was a Monday, and I was not working that day; late that evening, I was at John's house, and SO cold. My very bones were cold, and I couldn't stop shaking! This type of feeling is quite common during a certain time of the month ( which it was ), so I thought nothing of it. So I took some fever reducer and went home to bed. I woke up a few hours later sweating, so I knew that I had broken the fever.
I felt pretty good on Tuesday, so I went to work. Fortunately, all Tristan wanted to do was sit in the playroom and play cars, and their hunting video game. After work I went to John's to clean for Bible Study, and was worn out very quickly, cleaning took about twice as long as it normally does. Once John got home from work, he made me check my temperature- 102 degrees. So I took more fever reducer and fell asleep in his room during Bible Study. My fever had broken by the time everyone went home, so I left as well and went to bed. I had been texting my boss and let her know that it would not be wise for me to work Wednesday, in case I was coming down with some virus. I woke up late Wednesday morning, and every muscle in my body hurt, and taking just a few steps to the bathroom wore me out, and left me very short of breath. I had no saliva, and couldn't drink enough water. I felt like I had a killer case of the flu, but no other symptoms. No cough, congestion, etc. Typically I have one really bad day, and the next day I feel better, so I wasn't too worried. I was in a cold sweat all day, soaking through my clothes and my sheets, and constantly drinking water.
Thursday I woke up after a fitful night of sleep on the floor ( because I had sweat ed through my clothes and sheets ), feeling much worse. At this point I was a little worried. I couldn't stand long enough to take a shower, I had to sit in the tub, and then had a very hard time getting out. More cold sweats, and aches. about 3 pm I started getting worried. I called my momma a couple of times, but she was working that day and didn't answer her phone, so I left her a message telling her I was going to have John take me to the hospital. John left class early to come get me, and called his brother Jamey on his way home. Jamey and his wife Lucy know a good deal about my medical history, and know a bit more about Scleroderma than John did, so he was asking Jamey how worried he should be, etc. Jamey told him that, as I'm not one to complain about pain, or feeling sick, if I thought I needed to go to the hospital, he needed to take me!
So John came and helped me gather things together to get to GMH, he had to carry my down the stairs to the car....that was little humiliating, but I didn't really have a choice. We met up with Jamey at Church St and followed him to the correct ER entrance. He was able to park and wheel me inside while John parked his car. Lucy met us just in the door, got me registered and right back to a triage bed, in about 5 minutes. Withing probably 10 minutes, I had seen a doctor and was getting IV's and blood work started, and got hooked up to a heart monitor. My heart rate upon entering the hospital was 145 bpm, and my respiratory rate was about 135. So even though I was lying still in the bed, my heart was pumping as though I was running a marathon. I was having a very hard time getting enough oxygen, I felt like I was slowly suffocating. Jamey and Lucy got me hooked up to some oxygen, and that helped some. It was so funny to see Jamey teasing her about putting it on wrong, telling her to move aside and let the nurse work! I had been there maybe an hour when my parents arrived, so it was a crowded triage room! :) Lucy stood back and watched the doctors examine me, and then suggested a CT scan on top of the X-rays they were going to take of my chest. She told me that she thought I had Pericarditis, the swelling of the pericardium, which is the lining around the heart. A short while later, the ER doctor came in and told me the same thing, Lucy was excited at how ingenious she is:)
My CT scan revealed some abnormalities on my lungs, which they later discovered were cysts of scar tissue, formed on my lungs because of Scleroderma, an auto-immune disease I had been diagnosed with at the age of 16. I believe I was in the ER about 4 hours, and then I was taken upstairs to the Cardiac Care Unit. Blood work was done every 4 hours, I had 2 IV's pumping me full of fluids(about 5 liters total), and antibiotics, in case I had some bacterial infection that caused all the hoopla. They gave me 3 different antibiotics; the first one for 2 hours, than another for 2 hours, then another for 2 hours, and the cycle repeated itself. It was an almost sleepless night, as the lab vampires came in every four hours, doctors were in about as often, nurses every hour, and my blood pressure cuff went off every 30 minutes.
Friday morning, the dear little resident came in and informed me that they were insert a Foley catheter to be sure my kidneys were functioning properly, as I had yet to go to the bathroom despite the fluids they were giving me. I told him it was merely because my body needed all those fluids, and I hadn't caught up yet-but to no avail!! My nurse came in to put it in, and I'm convinced there is nothing that I have ever experienced as awful as that! My momma told me later that she had "had a catheter with a couple pregnancies....but she had an epidural"....Yeah, I didn't! About an hour and a half later, the resident, the attending, and another doctor came in to check on me and review on the the many labs done that day. I very sweetly, and very matter-of-factly suggested that, since it was clear that my kidneys were functioning properly, it was well past time to remove the catheter! They agreed that it would be ok, and I told the resident that the other two doctors were now my favorites...he thought I was kidding, but I was completely serious.
Jamey and Lucy stopped in that morning as well, and took a look at the bruises forming on my arms from the frequent labs, and commented on how they should be using pediatric tubes on my, which means that they draw the blood up in a syringe, and take far less blood. So he talked to the doctors about it, and they put a sign on the door for the lab vampires to see. That evening they decided I had stabilized enough to have labs done just once a day-at 4 AM. They do that so that the lab results are ready when the doctors start rounds at 6AM....Ungodly hours if you ask me! One particular draw was awful; the tech decided to go in the same place everyone else had been going in, which had turned in to a giant bruise. I don't know that she could even see the vein. And once a vein has been hit numerous times, scar tissue forms, so it's even more difficult to get the needle INTO the vein. So she dug around a couple times. At this point I was exhausted and so tired of having blood drawn; my arms were sore, and the tape was removing my skin in chunks. John was holding my other hand, and I was determined NOT to let this tech see me cry, so I waited til she finished. And seeing me cry made poor John cry. It was a very frustrating 5 minutes, and I'm thankful for the restraint of the Holy Spirit, because that tech was in danger of a broken nose by my sweet fiance.
They started giving me Ambien at night to help me sleep, so when the lab techs came in, I was barely coherent enough to hand them my arm. I think I was asleep as soon as the initial stick was over. The fluids started to build up in my hands and my feet and they swelled ridiculously. John had brought in 3 of his dress shirts, and my momma brought me comfy pants, so I was able to still be hooked up to the monitors, but I was much more comfortable and more modest:)
Mom Pachter came and stayed with me Friday evening while John and my momma went to work, cleaning the office buildings that John and I had been cleaning. She was very sweet and supportive, especially when the vampires came to get blood. I am very blessed to be getting such a sweet lady as my mother-in-law! She also stayed with me Monday night, and she and Uncle Gary and Aunt Suellyn helped me move down to a regular room.
John stayed with me day and night, he took off work on Friday and Monday, and only went home for about an hour to get showered at night. John is a very heavy sleeper....usually takes me a half hour to get him awake if he falls asleep on my parents couch. But every time I stirred, he was at my side, asking if I was ok, offering me water, making sure I was warm enough. My parents were very thankful to see him taking such good care of me. My daddy told him before we started dating that we were unsure of how scleroderma would affect me, that it could get rough, and asked if he had considered that possibility. So for my parents to be able to see how he responded when things got rough for me was a blessing for them, and it made my momma cry.
Saturday I had just about had it with sponge baths, but there was no shower in my room. So y nurse talked to my doctors and they told me that if I could get my BP above 90, they would let me take a shower. So John watched the clock, and about 1 minute before I started kicking my legs and marching in bed, and we got my BP up to 102:) Simple things like showers were truly a gift from God. Other gifts God blessed me with: friends that came to visit, and to sing with me. Aaron Higgs came up 3 or 4 times, and it's always good to see his smiling face!
One medication they put me on IV for a very short time was Potassium phosphate.....That was more painful than 13 labs done in 48 hours!! It started with a burning ache at the IV site that woke me up from a drug induced sleep. The nurse came in and cut the dosage drip in half, hoping that would help. About 20 minutes later, the burning ache moved up my arm and into my shoulder, and woke me up again. By this time my doctors were starting rounds, so they came in and assured me that it was a pretty typical reaction to that drug and that they could just give me the potassium via K-Phos pills.
Monday afternoon I was sent for an MRI, overall, not a terrible experience, but the contrast dye felt a little funny shooting through my IV.
Monday night I finally moved to a regular room, which was considerably smaller, but I had a my own bathroom and shower! Thank you LORD...That was the last night John stayed with me; after sleeping in a small vinyl covered recliner for 5 nights, he was ready to get into his own bed! Tuesday he went back to work, and Alana Chev came to visit me for a while, My housemate/BFF/sister separated at birth, Alicia came for a bit after Alana had left. My momma was able to bring my brother and sister for a visit as well, since I was out of the CCU. So that day passed fairly quickly. That day I had my two IV's taken out of my left arm, and a clean one put in my right forearm, just in case.
Wednesday morning the first thing I asked the resident at 6AM was if he was carrying my discharge papers. He laughed and promised to work on it. Later that morning the resident came back with the attending and the other doctor-I think his name was Dr. White- to discuss my MRI results. I asked him if he had my discharge papers, he smiled and told me it was very likely that I would be discharged, but he needed to confer with the cardiologist. Lucy came by about 10 Am and as we were talking, the attending, Dr. El-Ibiary, came in. We stopped and just stared for a second, and I asked if he had good news for me, and he told me he had just dropped off my discharge papers. Lucy and I cheered, and he blushed a little...My nurse informed me that realistically, it would probably be close to 2PM before the paperwork was finished and I could actually leave. So I got up and started organizing my belongings, and getting decent to leave. I got my IV taken out, and just sat with my momma and waited. Once we got my stuff on a cart, picked up my meds from the hospital pharmacy, and got to the truck, it was about 2:10. Home by 2:30 PM on Wednesday, April 28th.
6 days in the hospital, 4 days in the CCU, and what did God teach me? That I have much to be thankful for. In the midst of this storm, I don't recall doubting God's sovereignty, I was overwhelmed by the love pured on me by my family, John and his family, friends, and my nurses. Jamey and Lucy made sure I got the best cardiology team and internal physicians, God gave me the sweetest nurses, who took wonderful care of me. He gave me hilarious nursing students to amuse me in the room downstairs. I got to shower twice:D My boss has been so completely understanding; occasionally texting me to see how I'm doing, telling me how much they love and miss me, but assuring me not to hurry back to work before I'm ready.
I have been benefiting from my momma's cooking, and the swelling in my hands is gone, taking with it the pain I had in my hands the last 3 days I was in the hospital, and I can see my ankle bones. I was able to go to church Sunday morning, and fellowship with my church family. Saturday I was talking with my momma, and she was marveling at how well God provides when we need it. When Nathan needed hospital care, he got the best neurosurgeon, the best nurses, etc. And God gave me his best too.
My greatest desire during my hospital stay was to, by God's grace, maintain a joyful, uncomplaining spirit. And the LORD made that very easy, as he continuously showed me how gracious and kind he was being. God is good regardless of my circumstances, and he was much kinder than I deserved during these particular circumstances!