Saturday, July 11, 2020
I am a little late in updating everyone with my most recent hospitalization. I started feeling dizzy, with tinnitus in ears, and feeling like I would pass out in addition to the feverish feelings that have been plaguing me lately. No appetite, no energy, chills and sweats throughout the day, and vomiting after eating any food. Hopeful that the fever would break overnight, we went to bed. Woke up throughout the night with uncontrollable shivers. Unable to get to the kitchen to get a drink of water (or even the short walk to the bathroom) because of feeling light-headed on the verge of passing out.
Sunday, July 12, 2020
I am so grateful that the transplant team returns all phone calls (even after-hours) within 15 minutes. They advised me to get to the ER because of the nausea, vomiting and fevers. Even though my breathing with fine and I did not have chest pain, I do not have an immune system to fight off anything. I debated calling an ambulance to take me to the hospital. I was fearful I could not get up the stairs and then out to the car without either throwing up or passing out.
We arrive at the ER about 10am and grabbed a wheelchair so I could get inside. Immediately we were brought to a private room- no waiting at all with everyone else! Blood pressure was low. While it is always low, it was even lower than that. I guess it is standard to start an IV when in the ER even though I have a piccline. Because I was dehydrated, and my veins are terrible, they had to stick me 3 times to be able to start drawing blood. Many cultures and samples taken. I had been taking an antibiotic called zosyn at home every 6 hours, so we made sure to bring it with us. When in the ER, sometimes it is difficult to get meds on time. We have learned we can never be too prepared. I weas able to start that antibiotic and lactated ringers fluids (this was done last ER trip in June).
Many nurses and doctors cycled through. Nick was taking notes while I just laid there with my eyes closed. My blood count was low, and they wanted to start a blood transfusion. Count was 5 today. Was normally 9 in past records (low is not good). They mention sepsis a few times. My skin tone and eyes were yellowing, and my lips had no color. They started micafungin and linezolid IVs; oral Prednisone was administered. There is a brand-new antibody in my blood that means it is taking longer for the blood bank to get the correct blood; you need the correct blood to prevent any reaction. After 3pm, started more lactated ringers fluids. Nurse did say that the lactic acid level had come down which was good.
Around 5:30, said there was a bed for me to be admitted to the hospital. Because I needed to be on all the monitors during the transfer from the ER to the hospital, I got to take an ambulance! So, this is my 3rd time being transferred by ambulance from the ER to the hospital, but this is the only time I have felt I have needed it. No pictures this time to commemorate the experience; I just kept my eyes closed and promised not to throw up. No sirens or lights unfortunately.
Nick helped me get settled into my new room and left about 10pm. He could visit in the hospital this time, which was great, because I was in no condition to talk and explain my symptoms and health history to each new person. The nurses/doctors kept calling Nick with updates all night. They believe the zosyn antibiotic has caused hemolytic anemia (red blood cells are being destroyed faster than they can be made). They will adjust my anti-rejection meds to get my liver function back up. Still trying to find blood. They are reaching out to the Red Cross because there is not a match at the hospital. Said it can take 1-2 days sometimes. DONATE BLOOD!
Monday, July 13, 2020
12:30am the doctor called Nick again. Since hemoglobin count (blood count) was still going down (probably diluted from fluids) they were going to do a type O negative transfusion where there is possible reaction, but they needed to get my blood count up. They also planned on moving me to the ICU for better monitoring. Once I got to the ICU, they started the transfusion, gave me a quick “bath,” and otherwise kept me up all night (I do not really remember, I was out of it).
9am Nick talked with an ICU nurse that said I was responding to the blood (still not the match). Blood count up to 6 from 3 (9 in previous records). I was finally able to get out of bed and sit in a chair, but I was not allowed to stand as I was still conserved a fall risk.
4:30pm I was finally moved back to the CF floor. Hematologists came in quickly after we got to the floor. They are still looking into everything. Will be taking more blood samples and sending some to a lab in Wisconsin to verify that it was the zosyn that caused the blood reaction. We still do not have answers from this additional testing, but we have listed the drug as an allergy, so we will not run this risk again.
Tuesday, July 14, 2020
Two more units of blood were given overnight with vitals being checked often during the transfusion. There is no sleeping in the hospital in case you did not know already. During rounds on Tuesday morning, my transplant doctor said my numbers were moving in the right direction and I would be discharged the following day.
Wednesday, July 15, 2020
I was given discharge paperwork after rounds about 10am. Unfortunately, when someone flushed my piccline, they did not flush it with heparin. Heparin keeps my line from clotting. I needed to wait for hours for the IV team to use alteplase to bust the clot. I did not leave until about 5pm. But, once I was home, I felt normal again. No more fevers, appetite back, no nausea/vomiting. Good as new. Who knew that once you got the poison out of your body and some fresh blood, you would feel normal again?!