We had a few good weeks at home with marketable improvement from Julie. She finished antibiotics on Saturday Oct. 24. The lung infection seemed to be at bay. Just like last time, she was able to eat more after they were done since she no longer had a wheezy stomach from the meds. Her oxygen dependence was at it's lowest in months at 2-3 lpm resting and 4 when she was up and about. Her energy was up more than ever and she was doing a lot more around the house. She was regularly walking the hill by our home without getting wiped out. In fact she was experiencing some sore muscles in that skinny little body of hers. For one reason or another she crashed last night just 4 days after the med was done. This was the same amount of time in the last post that she crashed and went to the hospital for neutropenia. Yesterday she was feeling sore from all the activity, but her lungs x-ray looked good, and she was given the go-ahead to go on our postponed family trip to Hawaii in 10 days. As the day wore on, so did she. She was tired, and then she was exhausted. At about 1:00 am she spiked a fever of 100. She continued to try and sleep and at 3:30 am she woke me up with a terrible temp of 105 and a heart rate of 150. She refused to go the the ER and took Tylenol to break the fever. A few hours later it broke and she was back to 98 by 6 am. She was feeling nauseous, and could not get comfortable. She wanted to wait and just go to the infusion clinic at Huntsman. After calling them in the morning they deferred to her transplant team. We ended up in the ER mid-morning. She was worse this trip with blood pressure of 60/30 putting extra stress on her kidneys with the limited blood flow. They started fluids to bring the pressure up, all the while putting pressure on the lungs. She was neutropenic (low white blood cells to fight infection), and her underlying infections went systemic quickly. She was septic. They admitted her to ICU and they offered a BiPAP with a face mask to give her some assistance with breathing. Her ABG (Arterial Blood Gas) CO2 level was 53; Normal is 35-45. I could see the fear in her eyes. She was breathing 40-50+ times/minute; her baseline is around 25 right now, and normal is 12-20. Once she was on BiPAP, she was able to get comfortable. Her x-ray still looks decent, but with really low blood pressure, comes a whole host of issues. Blood being backed up into the lungs (pulmonary edema), pressure on the lungs, and low kidney function to name a few. With the fluids, antibiotics, and anti-viral meds, she has improved a lot. Her HR is back to 100 (her normal), blood pressure 95/53 (better but not normal), respiratory rate down to 25-30, temp is back to 37 C without tylenol, and her ABG CO2 is down to 47. She is still on BiPAP, and will be through most the night. She hasn't eaten all day in case they needed to intubate her. By the looks of it, she won't have to go down that road. If she can continue to get rid of CO2 and get that number closer to 40 they will be more confident she won't need intubation.
In an effort to get her treated quickly for sepsis, the ER doc prescribed her an antibiotic her Transplant pulmonologist told us to stay away from. Tobramycin is really tough on the kidneys. That alone is fine, but with her anti-rejection med Prograf being tough on the kidneys, you don't want to do both, especially with low blood pressure. I asked him to verify with Dr. Cahill twice...he didn't. They gave her two bullice doses, only to have Cahill discontinue once she rounded in the ICU. Another example to stand your ground if you know where your doc stands on something. I should have refused the med for her. We were assured that pharmacy deliberated for 30-45 minutes and figured they had decided (with Cahill) that it was worth the risk. After all it works wonders against the pseudomonas bacteria she has. We weren't totally against it if they thought it was safe. Turns out they didn't consult Dr. Cahill...did I mention that...like 3 times....
Julie refused an ABG initially in the ER since she hadn't heard it from a physician that she needed it. They are uncomfortable to get. The tech who made the first attempt in the ICU looked up to see how she was doing and proceeded to prod around like an acupuncturist. True to form Julie asked him to stop and get someone else. He told her he was confident he could get it...he didn't. The girl who tried after did so without any issues. As Julie came to, and her CO2 dropped (be it just 5 or 6 points) she started to ask more questions through her BiPAP mask. She is sleeping comfortably tonight here in the ICU. This is another occasion where I am so grateful for those who practice medicine and the facilities available to us. In many ways it is a selfless service. I see the hippocratic oath carried out in my wife's behalf. They put aside personal judgement and objectively care for her. They never stop investigating on her behalf. They stay calm under pressure, and roll with questioning. The best ones, listen to our questions and aren't afraid to acknowledge what they don't know, or have forgotten. For any folly mentioned here or in previous posts, they always make up for it 100 fold. My wife is alive, being treated well, and with thoughtful care, and we live in a country where we can still access good healthcare. I am so grateful.
So what is going on? Why is it taking so long for her to recover now that the cancer is gone? Well, she's a bit of a unicorn. For one, she is fighting pseudomonas infection in her lungs, while being immune suppressed to prevent rejection of those lungs. Second she is on meds to fight CMV (cousin to Mono) and Aspergillus (fungus) in her lungs that lower her white blood count causing neutropenia from time to time. If she get's neutropenic, what ever infection or virus that in or around her, can move into her entire body. This risk is similar to patients undergoing Chemotherapy. That about sums it up in lay men's terms...sort of. It is a balancing act of several variables, and truly takes a team effort from the docs and the patient
Pray on, hope on. It's the best we have. She was doing well yesterday, so no reason why we couldn't get there again soon.