I'm going active on the transplant list on Monday. There are only thirteen candidates on the list and my allocation score puts me near the top of the list. I don't expect a long wait. In the meantime, life goes on. Joe will keep working and keep up his travel schedule. If I get 'my call' while he is traveling, Alex will take me to the hospital and Joe will travel to Minneapolis ASAP and will be there before I'm out of surgery.
I will spend about a week in ICU learning to use my new lungs. I expect to spend 2 - 6 weeks on the unit on 6C, in a private room, getting some strength back, making sure my new lungs work, and generally recovering. I will have a feeding tube for three - four weeks and I hope that comes out and I will 'learn to eat' again. I will be doing pulmonary rehab under special monitoring conditions: walking on a treadmill with O2 and an oximeter to make sure I stay oxygenated. I won't have any high pressures in my lungs preventing blood flow and oxygenation of the blood; however, I will probably need O2 for exercise for at least a few weeks.
Then comes the challenge and joy of returning home. I know I will be so happy to get back to my house and some routine. Joe will be over the moon to not have to drive into the city everyday. When I return home the big challenge will be: I cannot be alone, for even 5 minutes, for the first 3 months. I will not be able to drive. I will be able to tend to my basic grooming needs and be independent enough to take care of myself. I plan on being able to cook, to sew on my quilts and take care of my plants. During this time, Joe is going to attempt to continue to work; it should be fairly easy – he works from home in his dungeon most of the time. His traveling is sporadic. But here is where the village comes in.
Joe and I will need some help to get through those 3 months. The poor guy needs a break from me once in a while, to play tennis, workout, to get his work done without worrying about me.
I will need:
Rides to Pulmonary Rehab
Rides to Clinic
Someone to stay with me for short periods during the day so Joe can play tennis or just get away.
Someone to stay overnight in a comfortably appointed suite at Chez Auzenne/Levitch when he must travel.
Alex will be available for overnight stays on occasion; however, he is in school (finally!) and that takes priority for his daytime work.
I will work smarter, not harder, for things that I can: I am accustomed to shopping online for everything from groceries to household supplies to shoes and clothing so that should not be a problem - I will plan to continue that. So I would only need help getting groceries into the house and put away.
Joe's idea of cooking is opening a can of soup. I had to teach him to add water to condensed soups; but I think we have that under control. I love the idea that I will be able to cook again, but I know that will take some time, so we will need some meals that can be easily prepared.
I will spend about a week in ICU learning to use my new lungs. I expect to spend 2 - 6 weeks on the unit on 6C, in a private room, getting some strength back, making sure my new lungs work, and generally recovering. I will have a feeding tube for three - four weeks and I hope that comes out and I will 'learn to eat' again. I will be doing pulmonary rehab under special monitoring conditions: walking on a treadmill with O2 and an oximeter to make sure I stay oxygenated. I won't have any high pressures in my lungs preventing blood flow and oxygenation of the blood; however, I will probably need O2 for exercise for at least a few weeks.
Then comes the challenge and joy of returning home. I know I will be so happy to get back to my house and some routine. Joe will be over the moon to not have to drive into the city everyday. When I return home the big challenge will be: I cannot be alone, for even 5 minutes, for the first 3 months. I will not be able to drive. I will be able to tend to my basic grooming needs and be independent enough to take care of myself. I plan on being able to cook, to sew on my quilts and take care of my plants. During this time, Joe is going to attempt to continue to work; it should be fairly easy – he works from home in his dungeon most of the time. His traveling is sporadic. But here is where the village comes in.
Joe and I will need some help to get through those 3 months. The poor guy needs a break from me once in a while, to play tennis, workout, to get his work done without worrying about me.
I will need:
Rides to Pulmonary Rehab
Rides to Clinic
Someone to stay with me for short periods during the day so Joe can play tennis or just get away.
Someone to stay overnight in a comfortably appointed suite at Chez Auzenne/Levitch when he must travel.
Alex will be available for overnight stays on occasion; however, he is in school (finally!) and that takes priority for his daytime work.
I will work smarter, not harder, for things that I can: I am accustomed to shopping online for everything from groceries to household supplies to shoes and clothing so that should not be a problem - I will plan to continue that. So I would only need help getting groceries into the house and put away.
Joe's idea of cooking is opening a can of soup. I had to teach him to add water to condensed soups; but I think we have that under control. I love the idea that I will be able to cook again, but I know that will take some time, so we will need some meals that can be easily prepared.
Alex has volunteered to take Sydney for as long as I need him to. She is a wonderful snuggler, but until I am able to take her outside, she will have to stay with him.
And that is the purpose of this blog entry comes: I am doing something that remains very difficult and awkward for me: I am trying to ask for your help. I'd like to have a list of willing volunteers who are able to help me out, what they are willing to commit to, so when I do ask for help, you probably won't say "No." I think that is what one of the main reasons I don't ask for help: I'm afraid you'll say no.
If you are willing and able to commit to anything from a couple of hours every other week or up to an overnight stay on occasion, please let me know. I'd like to compose 'a plan' that I can put in place when I return home. A friend asked if there was someone I trusted to coordinate it all – so if you are out there, I will trust you.
A summary of tasks that I will need assistance with:
Rides to Pulmonary Rehab (Bloomington to Southdale) 3x a week usually around the noon hour.
Rides to clinic (Bloomington to UofM various times and days of week.
Help with groceries (once a week, usually Monday or Tuesday)
Meals for Joe & Vikki
Staying with me for a few hours any day of the week. If you play cribbage, it's a bonus.
An occasional overnight stay in a comfortable suite at Chez Auzenne/Levitch -- I may need help with changing the sheets.
Rides to Lifetime Fitness (106th & Morgan to 98th St & 35W)
Help with laundry
Any other ideas I haven't thought of?
Thanks in advance for your help and support – we couldn't |
do this without you.
Rides to Lifetime Fitness (106th & Morgan to 98th St & 35W)
Help with laundry
Thanks in advance for your help and support – we couldn't |
do this without you.
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