Staying here for another day, a few more test to go. Got some answers to a bunch of questions and Im having an AWESOME HAIR DAY!! Things are looking up!
Looks like I will be going home friday night or saturday morning. Im exhausted and looking forward to being home and adjusting to my new normal.
My transplant team meets on Tuesdays and it sounds like it could be a little while before they decide if they are actually going to put me on the transplant list for sure. I have to wait for the results and consults between my transplant team and all of the doctors and technicians who have completed each and every test, scan, and procedure. Optimistically I want to think that I will get listed and we go from there but I have yet to get a definitive answer so Im hesitant to allow myself to get excited. I do not like uncertainty and wondering- I like order, being prepared, and educated.
My lungs are in pretty bad shape. My body is extremely de-conditioned and weak from this very long hospital stay and fighting this virus. I want to write all about my awesome plans to get back to school and work, and life as I know it but I don’t know how to do that when so much of my condition is uncertain. I don’t know if I will be ABLE to go back to work or to continue the schedule I used to have. Rest assured that I will be physically working very hard to get strong and back on my feet. BEAST MODE..
There is so much I don’t know and there are so many questions that I simply do not have answers to.
i do know that I’m going to need help. LOTS of help. Solicited and unsolicited, whenever and however its offered- I am not too proud or stubborn to have to admit that and I warmly welcome any and all support from rides to meals and everywhere in between. I’m not really good at ASKING for help because I’m used to just handling my business and doing it myself. I am in a whole new stage of this illness and I have to accept, prepare, and manage. I will need assistance and as humbling as it is to have to admit that- it is part of this process. Thank you in advance to all of you reading this and thank you all for sticking by me. I value each and every one of you and I am so grateful to have such amazing friends and family supporting me through this life saving, life changing, experience.
Good bye for now from my micro-loft in the city and I am anxiously awaiting my return home and seeing you all very soon.
Lysa
Lysa remember what I shared with you. You are entitled to home care. A home nurse will visit you once week for as long as your insurance allows. You are also entitled to an inhome physical therapist, someone to coax you along and help you rebuild your stamina. Talk to your nurse..she can contact the Social Worker, who sets all this up. There are home agencies who do this . I have had inhome care post discharge and it does help alot.
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Thank you, i will be sure to look into it.
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