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rainbows and glitter,
Every transplant is different but I can try to answer your questions based on my own experience. My experiences from years ago may not be as relevant these days so I hope you will get some more useful information directly from the NIH.
I think that a caregiver should be someone who can listen to the doctors and nurses and take notes. For example, if the doctor comes in to check you and tell you how you're doing, but you're conked out at the time, your caregiver can listen and write it down. Your caregiver can keep track of questions you have and remind you to ask them or ask on your behalf. He or she can help you call for a nurse if you need one. They can talk to you when nobody else is around. They can find the slippers that disappeared under the bed, keep you steady as you walk around, help you deal with hospital bureaucracy, make sure you fill out your meal menus on time, help you stay connected with the outside world, or deal with other situations that come up as they come up.
Your caregiver doesn't have to be a nurse and doesn't have to help with bathing or dressing or the bathroom. They don't have to be there 24 hours a day, but the more time they can be there during the day, the better it is for you. Some people go it alone in the hospital, but I think that having another person there with you helps immeasurably. It's often a spouse, parent, sibling, adult child, or a very close friend.
What the caregiver does depends on who it is and what your relationship is. The two of you can work out the plan so you both have realistic expectations. I hope there's somebody who can help you this way.
Chemo affects hair, and some patients lose it all right away, but that's not always the case. My wife's hair just got thin after she got chemo and radiation. Either way, your head can get cold.
Most patients sleep a lot, and many feel icky some of the time. Medicine can help. Side effects differ from patient to patient and case to case, and sometimes you just have to roll with the punches. You might have a rash one day, an upset stomach another day, and feel pretty good another day. Or you might be fine the whole time.
NIH is a bargain (free!) but you still have bills at home. Patients should check if they qualify to go on state disability. Some employers may support other arrangements, such as the use of paid vacation, sick, and personal time. Another consideration is what to do about expenses of the caregiver. It's not uncommon for patients to rely on their family members to help with expenses.
If people at the hospital are implying that every single transplant patient survives every transplant, that's incorrect. Most patients get through their transplant, but a minority do not. A transplant can save the life of someone with a potentially fatal disease, but sometimes the disease has progressed too far, and the transplant procedure itself has risks. Whether the survival rate is 70%, 80%, or 90%, you are always taking a chance with any treatment for a life-threatening disease. But if they were talking about "their protocol" (whatever that means) then that's presumably something more specific. If the doctors who know your specific situation are showing confidence, that should give you confidence too. Given your young age, lack of excess blasts, and multiple donor matches, it seems to me that you have a lot going for you.
Not everyone admits that they are freaking out when they face something scary, but any sensible person would be worried about the possibilities. The best you can do for yourself is to establish a working relationship with the doctors and nurses, ask lots of questions until you know more about what you're up against, let that knowledge build your confidence, and go forward.
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