Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Keir is about Day +108 post transplant now (I'm losing count) and as far as we can tell all is going quite well. On Monday I took him to Loyola to have his dressing changed on his Hickman catheter port and the nurses were not happy with the condition of his skin - looked like it might be getting infected.
Since he'd had it inserted at Rush (not Loyola) Rush needed to take it out and they couldn't do it until June 17. But the nurses at Loyola were adamant that it must come out immediately so they told me to call and TELL, do not ask, Rush this. I did, and he had it removed on Monday and though we are still waiting for culture results, he has no fever or pain and is very glad to be without his port for the first time in nearly 10 months. He sees his doctor every other week now and has bloodwork at that time.
Like some of you have mentioned, I've found the transition both a relief and anxiety provoking. Every sneeze, cough, etc., and I panic a bit. Since I quit school and my job to care for him, I am also trying to figure out what to do and when to do it in terms of life-rebuilding, as is Keir. One thing I am keen to do is to try and modify his diet to one that is more immuno-supportive. But his appetite and tastes are tricky so I want to make gradual changes - any suggestions?
You all remain in my prayers and I thank you all for the support and prayers for Keir. I have just begun to see a therapist to try and get a handle on this anxiety and PTSD. Going into hospitals is very hard for me right now - had to go to two on Monday and I come home and am so wrung out emotionally that I'm not much good for anything - not an ideal situation. Keir is more concerned about rebuilding his life - finding work eventually, finding new friends (very few of the people in his life before AML remain, sadly) and such. So we are both at a strange point - grateful for the way things have gone and all the good things, but unsure how to go about life right now - a strange dilemma indeed!
Since he'd had it inserted at Rush (not Loyola) Rush needed to take it out and they couldn't do it until June 17. But the nurses at Loyola were adamant that it must come out immediately so they told me to call and TELL, do not ask, Rush this. I did, and he had it removed on Monday and though we are still waiting for culture results, he has no fever or pain and is very glad to be without his port for the first time in nearly 10 months. He sees his doctor every other week now and has bloodwork at that time.
Like some of you have mentioned, I've found the transition both a relief and anxiety provoking. Every sneeze, cough, etc., and I panic a bit. Since I quit school and my job to care for him, I am also trying to figure out what to do and when to do it in terms of life-rebuilding, as is Keir. One thing I am keen to do is to try and modify his diet to one that is more immuno-supportive. But his appetite and tastes are tricky so I want to make gradual changes - any suggestions?
You all remain in my prayers and I thank you all for the support and prayers for Keir. I have just begun to see a therapist to try and get a handle on this anxiety and PTSD. Going into hospitals is very hard for me right now - had to go to two on Monday and I come home and am so wrung out emotionally that I'm not much good for anything - not an ideal situation. Keir is more concerned about rebuilding his life - finding work eventually, finding new friends (very few of the people in his life before AML remain, sadly) and such. So we are both at a strange point - grateful for the way things have gone and all the good things, but unsure how to go about life right now - a strange dilemma indeed!
So good to here from you today as I was wondering how Keir and you were doing. I am sure he was happy to have his port removed and I am happy to hear that you are getting some help.