- Get up at 7:15-7:30AM
- Take Vital Signs and Log for Transplant Coordinator (Weight; Temperature; Blood Pressure)
- 2-3 times a week check Blood Sugar
- Use my Spirometry Device and record outcome; need 3 successful tests (the machine talks to you so if you don't blow hard or long enough, it tells you your tests was unsuccessful and you must do it again) - my torture device!
- Anti-Fungal Nebulizer (takes about 1/2 hour) - Awful tasting and makes me cough!
- Shower and change Wound Bandage; while in the shower, I must sit on the shower chair and my Mom must scrub the wound, and run the hot water over it to get it clean and healthy; put on new wet to dry bandage once out of the shower - yeah, that's fun.
- Take Nasal Spray
- Take Daily Morning Medications (11 different pills just in the morning; 33 pills total for the day)
- Take the one Medication that is a Suspension Liquid - Disgusting doesn't begin to cover it!
- I am required to wait one hour after I have taken my pills before I can eat my breakfast.
- Get Dressed and check the clock; can I eat yet? Usually take pills at 8AM, so breakfast can be at 9AM. Oh look at that; it's taken so long to get all this done, it's actually 9:30AM and yes, I can eat breakfast.
The morning ritual takes about 2 hours. None of it can be skipped and all of it must be recorded for my Transplant Coordinator to review when she sees me.
On the days I go to Rehab I have to make sure I get it ALL done, including breakfast so I can get out of the house by 10AM to head off to Rehab. By the time Rehab is over and we get home, it's noon and it's time for more medication and lunch.
By now I need a nap. My wound is sore from Rehab and I'm usually worn out from the exercise, so I have my lunch and take a nap.
Before you know it, it's 4PM and time for more medication. I finally have some time for getting on Facebook, maybe working on my Blog, Twitter or trying to talk to friends.
And then the before you know it it's dinner time. 8PM is time for my final round of medications. I try to stay up until 10PM so I don't go to bed too early and then wake up too early. But my sleeping is all over the map. If my cough wakes me up, usually that means getting out of bed and coughing for two hours.
Sometimes, like the other night, I was in pain and couldn't sleep. I have pain medication, but if I take it I'll be a zombie in the morning and yesterday's morning routine had to start early because I had a doctor appointment and couldn't be running late because I overslept. So I sat up from about 1:30AM until 3:30AM before trying to go back to bed and fall asleep.
Most nights something wakes me up several times a night. My IC bladder is often one, so if it isn't transplant related, it's my IC. I know many can relate to the sleep problems; it's not fun for sure.
And the whole thing starts over again the next day. Tuesdays and Thursdays are always Rehab. This week I have a doctor appointment on Monday, then Rehab on Tuesday and Thursday and the Wound Care Nurse down at Loyola on Wednesday. So I have an appointment every day but Friday. This is typical. The same thing is on the calendar the next week. 4 out of 5 days I have either Rehab or a doctor appointment.
Then there's the side effects of all that medication that has to be dealt with. Having a transplant is like having a full time job. They told us it would be like this. They didn't lie or exaggerate that's for sure!
Yes, it's a lot of work. Saturday or Sunday I must fill my pill box for the week and that takes about an hour to fill the 28 slots in the box. But it's worth it. I am here, I am alive and I am blessed and lucky. But getting a transplant isn't easy and takes a lot of dedication from not only the patient, but their support system as well.
The daily ritual is time consuming and often feels like a job. But it is work well worth doing and I am grateful to be doing it!