The good news: I seem to be regaining a little of my cognitive functioning. I can remember a few things now and then and I can communicate a little better.
We went to Hatteras on my antibiotic break in August with two other families and stayed in the new trailer. It was a wonderful break and a great time. We came home to start back on the antibiotics and to weather Irene. We were fortunate to have a new generator and less that a day without power. The house was fine but for the loss of a few shingles. I think the generator's presence accelerated our restoration of power. The storm shutters miraculously move the storm's path. We still have not heard if we have a trailer or not, but that is nothing compared to the suffering of others on the island and up north. They are in my prayers.
Labor day weekend I had some swelling and discomfort in the arm with my PICC line (Peripherally Inserted Central Catheter: IV line) My nurse looked at it and said to go to the ER if it got worse. The swelling seemed to go down some, so I took it easy all weekend. Sunday night my hand was quite swollen and uncomfortable and I awoke with my arm over my head. I guess I was elevating it in my sleep. I packed a little bag just in case and went to ER. I had been a few weeks earlier for swelling and the tests came back negative for clots, so I was just going to be sure it was just inflammation like the last time.
As it turned out I had blood clots in my forearm, 100% blockage at my PICC site, clots under my clavicle and in my neck. They started me on blood thinner shots and Ron brought me home. They removed the PICC line Tuesday morning and put a new one in my right arm. This is the first time I have been scared through all this. The prospect of a heart attack, stroke, or pulmonary embolism is daunting. It has shaken me more than I can describe. I cannot lift things, push a heavy shopping cart, or even stir the dog food. I am so used to being independent and now I am uneasy to be alone for any real length of time. I am so grateful for Ron, Lee and my close friends.
Last Thursday was my appointment with my doctor in DC. My niece Sabrina (Bill and Melissa"s daughter) had a clot in her Central Line ( she has had a transplant and gets nutrition and medication through her line). She had to be at Georgetown University Hospital on Thursday as well, So we had a family caravan with IVs in backpacks running the whole way up. As mom used to say, "It was an adventure!" Sabrina had her new line placed, but is now at CHKD today with an infection in her line. I can only pray for her healing and strength for Bill and Melissa.
Despite the blood clots, my doctor thinks I am responding well to the treatment and sees some improvement earlier than he expected. (That was the good news by the way.) Ron's brother, Chris, was in Northern Virginia and brought me home from Georgetown. We made it back in time for Lee's last school open house.
The new antibiotics are the strongest yet. Monday was rough, but manageable since I did not have to do anything.
I went to my Garden Club meeting yesterday and tried to pretend I was better. Marnie Morgan, who has known me since I was a young child (Mom worked for her husband for over 25 Years), called me out when I said I was doing OK by looking me in the eye and saying, " You're lying." She has a loving directness one cannot escape, and I know why Mom cared so much for her. I think Mom may have been with her at that moment. I even wore high heels, but walked more like a little girl playing dress-up in her mommy's shoes. I went home and was asleep at 5:30 did my IV at 9:00 and slept through the alarms on the pump and my phone until 7:00 AM. I wanted to see Sabrina today, but my tremors were so bad after the antibiotics, I did not feel comfortable to drive.
This week is the warm-up round, next week the regime intensifies with the addition of two other drugs and a solid week of treatment with no rest days. Dr. Jemsek said other patients have described this phase as the "sickest they have ever been". Sounds like yet another adventure!
