Time: 6:30am
No updated blood counts, as I haven't had labs drawn since 10.04.18. My next clinic appointment isn't until Thursday, and my team believes that I'd doing very well.
Still having trouble sleeping. I've been lying there since 4am waiting for the sun, and a respectable hour so I felt like I could get up. It doesn't help that my internal temperature gauge is all screwed up. I'm having crazy night sweats, and I wake up sweaty several times a night, even though I keep the room arctic. The care partners at the hospital used to joke that when Keith came down to stay that he would need extra blankets unless he was a penguin. I told them we're from Big Bear; we're used to the cold, but I think that I'm maybe running a little hotter than usual most of the time. (No temperatures, though, I've been checking a couple of times a day.) I think the sleep might be improving incrementally, as it's only taking me an hour or so to fall asleep, but my activity tracker recorded 2hrs 50min of deep sleep last night, and 4hrs and 26min of "light". It's still a far cry from the way I used to sleep, but hopefully as I continue to reduce some of my meds, the sleep will get better.
I'm down to 40mg of steroids a day (thank goodness) and all has been well on that dosage, so hopefully I will get to reduce further this week. I am still on a fairly high dosage of Tacrolimus, however, and the tremors and shakes are frustrating and foreign.
A lot of people have asked me about my dietary restrictions. I am no longer required to eat a "low bacteria" processed neutropenic diet. I can have fresh fruits and vegetables, as long as they are well washed, and can eat most things. My only restrictions are that I cannot have raw or under-cooked meat, eggs, seafood, unpasteurized dairy products, or any food from buffets, service deli's, any food cut or cleaned by someone else, and all cooked food must reach an internal temperature of 165 degrees. I am still eating a fairly processed diet, as Tiverton (the hotel) does have a communal kitchen, but I feel uncomfortable mixing my food with everyone elses, so we have just been using the small bar fridge in our room to store our meals, and really buying a lot of convenience foods that can just be cooked in the microwave. Still the queen of peanut butter and jelly sandwiches.
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| Tiverton House |
I've had a difficult week mentally, as my employer decided to change our health insurance as of October 1st. I was previously enrolled in an HMO plan, and as such, my selected medical group was responsible for my post transplant care up until day 90. (I was still responsible for meeting my deductible and my max out of pocket for the year, but they were responsible for covering and making sure that I got the required care that I needed.) My employer decided to no longer to offer an HMO plan, beginning on October 1st, so my medical group immediately dropped all plans of after care, and I had several departments at UCLA scrambling to try to secure emergency authorizations to keep "continuity of care" so that I could get the treatments that I immediately needed. The staff at UCLA said that they have never had this happen to a transplant patient. On top of the change from HMO to PPO, I am now again required to meet a new deductible and max out of pocket amount between now and December 31st, 2018 and then, again, beginning on Jan 01, 2019. Under my new PPO, the coinsurance on a single month of ONE of my required medications is $2765. When I went into transplant I fully expected to meet my max out of pocket for 2018 of $4500, but I didn't expect to meet that, and then have to meet another max of $6350 as well. Between appointments, and fatigue, and not feeling very well some days, I've been working on contacting the drug manufacturer for the most expensive of my medications to see if they have any copay assistance programs, researching assistance programs online, and juggling calls from the financial department, nurses, and social worker at UCLA who are all trying to help make sure that I continue to get the care that I need. It's fucking exhausting and entirely emotionally draining on top of everything else that I have going on right now.
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| IVIG Expensive but Necessary |
Antibodies are proteins that your body makes to help you fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus) that gets into your body. Over the course of your life your body makes thousands of different antibodies. IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated collection of antibodies against many possible foreign substances your body might encounter.One reason you might need IVIG is if your body does not make enough antibodies. The IVIG simply provides extra antibodies that your body cannot make on its own. The antibodies usually last for several weeks and help your body fight off a large variety of infections. If you are getting IVIG for this reason, you will need to get it on a regular schedule."
I'm a quarter of the way to Day +100 which is a really important milestone post transplant. Day +100 is when the greatest risk for critical side effects is past, and hopefully my new stem cells have engrafted and started making new blood cells.
Onward and upward.
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