Doug now "looks good on paper" -- his counts are coming up and his ANC is now 1376. As far as the numbers go, he could be discharged by now, but he has to get in better physical condition before he can go back to outpatient status. He is still having fevers but they seem to gradually be lower temps. His chest CT came back -- no infection! He does have some lung changes and some fluid but that should improve as he is able to breath more deeply and get more active. Last night they had to up the oxygen to 3 liters but today he was able to take off the oxygen. He had another red blood transfusion last night -- that might give him a bit more energy since the red cells carry oxygen to the body. His electrolytes continue to be all screwed up and are being replaced by IV daily, but once he is able to take in some food -- I'd be happy with even more Ensure at this point -- that too should improve.
His kidney and liver values are stable and the docs are not worried about that.
I had a meltdown this morning -- tears, racing pulse, could hardly talk etc -- my first anxiety attack. Guess I've been going too long on little sleep and a lot of stress. I was a physical and emotional mess. I called one of the outpatient transplant social workers that we had met and within ten minutes she had sent the inpatient social worker to the hospital room. We went out into a quiet place and I vented and told him about how I just couldn't cope -- he said all that is normal for transplant caregivers. He recommended that I go on drugs temporarily - he said the majority of caregivers are on some kind of drug to help them. So I did call and got two prescriptions, one an anti-anxiety drug and one is an anti-depressant! Never thought I'd be doing that! I thought I was holding up okay but just reached the place where I could hardly function. And since I *must* be healthy and strong for Doug, I'll do whatever it takes.
I got lots of help today -- the social worker also called the psychologist, the chaplain (wonderful woman) and the massage therapist! The massage was great, and she did some Reiki on my shoulders too - first time for that kind of healing touch and it was very calming. And the social worker also arranged a meeting in Doug's room of our nurse, the doctor and nurse practitioner. This was so we could get a better understanding of what is happening with Doug. All these people are on the transplant team -- the social worker really called in the marines! The whole team is there to support us. They will not do a transplant unless each patient has a full time caregiver, so they know they need to support both patient and caregiver.
I had been trying to not let Doug know of my stress but for the last few days I would fall apart when I left the hospital. The team all said not to hide my feelings from him. So now he knows and it doesn't seem to upset him. He's on so many drugs he won't remember anyway!
Some things the doctor said: there is no "normal" with this disease or treatment - the course of recovery can be very different for each patient. Also don't look ahead more than 12 hours because things can change. Some patients have a very long slow recovery and some faster. He also said "there is nothing natural about what we did to you".
I have taken my 'happy pills' and hope for a good night's sleep. God is providing and watching out over us.
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