It’s Alexx. Rough night but then the day got better 🙂
April 24th, 2016 Day +17
Alexx slept over last night and the boys went out to dinner. Around 1030PM the covering doctor came in and told me that I had yeast growing from the Hickman catheter, meaning I have a fungal infection. That could explain the low grade temperatures I have been having (bacterial infections tend to cause higher fevers; fungal infections are generally low grade). The peripheral blood cultures have been negative thus far, so it’s possible that just my Hickman catheter is infected/colonized.
The covering Doctor spoke with the infectious disease attending and the hematology attending and they decided to start Amphotericin, a very strong anti-fungal. Alexx called Dakota to come in and help her overnight since sometimes people react to Amphotericin. Alexx made sure I got all of the proper pre-medications (Tylenol, Hydrocortisone, and Phenegren). The kids monitored my vital signs closely and thankfully I had no issues. Amphotericin can cause issues with electrolytes and the kidneys so I will need to be monitored closely. Alexx was up most of the night researching candida and the different treatment options, and even spoke with her cousin Ian who is a doctor and her friend Will who is a Transplant ID attending at Columbia. My vitals remained stable overnight so there was no concern for sepsis.
The morning was very productive. Many different doctors from different specialties came to see me.
First was infectious disease. He thinks that it’s likely the Hickman catheter that is the source of infection but one can ever be 100% sure. Since I look well and my fevers have resolved they are going to leave the Hickman in for now and treat through it. If I develop fevers again or become unwell then they will call the surgeons in to take it out. Ideally the Hickman would be removed and I would get all of my medications through peripheral IVs, but I have so many medications and blood draws that this would be very difficult. They will continue the Amphotericin for now, make sure I can tolerate it, and follow up on the specific type of fungus and what anti-fungals it is sensitive and resistant to. As part of the work up for candidemia (meaning candidia in the blood) I will need to get an eye exam, echocardiogram, and Abd US. This is to ensure that the fungus hasn’t infected any other parts of my body. They think it is unlikely that the fungus is in my sinuses because the CT sinuses was fairly benign.
The nephrologists then came to see me to talk about my blood pressure. They think it is likely caused by the fluids, TPN, anxiety and pain. But since my volume overload is improved (as seen by improvement in my swelling and decreased pleural effusions on CXR), they are going to start Captopril 12.5mg BID.
Some of my liver enzymes are elevated. My alkaline phosphate is 432 and my GGT is 433. Also my LDH is 2077. They think these liver abnormalities are likely caused by the TPN. So they are going to hold the TPN for 24 hours. It could also be caused by the Fluconazole, which has now been stopped. The abdominal US will also check to make sure my liver is okay.
My favorite aide Hadara. She is strong yet so gentle and she gives the best showers.
My albumin has improved to 2.7. Hopefully my nutrition will continue to improve. And maybe slowly I will be able to try eating.
I still have melena, which is black stool and indicative of GI bleeding. However my hemoglobin and vitals are stable so it could be just residual from the bleed I had earlier in the week.
- Eye exam was totally normal
- Preliminary report for Abd US showed normal liver and spleen. Just slight sludge in my gallbladder which is essentially normal. Will await the official report
- I get to drink a whole Ensure today!!! Slow sips and I’ll see how my tummy handles it.
I sat in the wheelchair today and it feels amazing to be upright. Today is the first day where I actually feel good and hopeful. I know healing isn’t a straight line and that there may still be bumps in the road ahead, but overall I am finally seeing some progress in the right direction.
“I’m mobile, I’m mobile!!”
My family has been incredible. I am never alone. At least one person sleeps here every night. They hold my hand and reassure me that everything is going to be okay. They lift me up when I am feeling too down to do so.
My friend Michelle, one of my dearest and oldest friends–we’ve known each other for 50 years—is coming on Tuesday to help support us. It will be very refreshing to see such a good friend, and somebody who is fresh and not quite as burned out as my family. I’m so grateful she is coming, it will be a major help to me and my family.
Love you all! #VivaAviva