So much has happened that it’s hard to know where to begin. I guess the logical starting point for me is after my post-op doctor appointment. To reduce my leg swelling, and therefore the pain, the doctor recommended to spend more time on my back with my leg elevated on three pillows. I started following that Monday night after getting home from the appointment. So, Monday night, Tuesday, and Wednesday I spent considerably more hours flat on my back with my leg high in the air. I really believe that this is what started the problem. It did such a good job of getting more lymph fluid out of my leg, but I think it was too much fluid too soon with no where for it to get processed out of my body. No doctor confirmed this, even though I repeated this story, but that’s what I think was the determining factor. Who knows. . . maybe it had already begun before Monday; I don’t know, and the doctor never checked my abdomen or bypass incision. Why a drain wasn’t inserted during surgery was never asked or answered, but it might have avoided this 8-day setback.
So, what happened is that I started feeling sick late Wednesday afternoon, and got worse through the night. When Bill came downstairs in the morning, I was feverish, had a bad headache, and felt nauseous. I didn’t feel as though I could move off the sofa. The really ironic thing was that my leg felt the best it had in three weeks – almost zero pain when moving it down off the pillows. Bill called the Visiting Nurses and was told to either take me to urgent care or the ER. We decided on the ER, and then eventually realized that calling 911 was the best option. So, I’ve now had my first ambulance ride. I pray it’s my last.
We got to the ER by 9:30am, and I was checked head to toe – they were quite thorough in their testing. They found an abscess in my abdomen, and started me on strong, broad spectrum antibiotics. I was admitted to the hospital late afternoon/early evening, but wasn’t moved out of the Emergency Department until close to midnight.
Friday, Saturday, and Sunday were spent with the Hershey team trying to communicate with my U Penn surgeon. With every doctor holding a cell phone today, I still don’t understand why it took three days. Anyway, U Penn finally released my medical records, and I had an accordion drain inserted on Monday. I think they removed 60 cc’s of fluid (compared to a football). All of the testing also found a pulmonary embolism, so treatment was started for that too. The next few days were a challenge as I really did not feel well at all. My abdomen was full of fluid, and I guess the organs were basically floating out of place – it felt that way too! Tuesday, a visit by neighbors brightened the day, but then I found out that I had to be moved to a different room (I was in a specialized room in the Cancer Institute that was needed for a transplant patient). The move was rough on me. The new wing was noisy, and the narcotic I was on had me feeling quite scared that night. I hit a wall on Wednesday – I wasn’t feeling any better, and I felt as though all the doctors were concentrating on was pain, and not doing anything to help me feel better. I was upset, emotional, scared, and starting to lose hope. The medical solution for that is Atavan – a “happy” pill. It zonked me out, and Wednesday became a blur. Thursday I was ready to fight again, and I decided to stop all pain meds. I needed a clear head. The morning made a turn for the better after a visit by the Occupational Therapist who helped me get cleaned up (bird bath), walk to the bathroom, and get myself settled into a chair. Finally some progress! I surprised all of the doctors by my change in attitude and appearance. I was most happy to surprise Bill.
Although the doctors thought I wouldn’t go home till the weekend, I was ready by Friday. I was able to walk with a walker, and my biggest challenges were the complete lack of appetite and nausea that continued. My nurse thought it might be from the antibiotics, and suggested taking Zofran half an hour prior to each meal. While we didn’t start that quite soon enough to make a difference on Friday, it served me well yesterday and I was able to actually put a little food in my mouth. I was released mid-afternoon with a ton of discharge instructions. My parents had visited at noon, which was another bright spot, and our oldest son came home to help out, which he REALLY did. It was so helpful having our daughter work at the Med Center, and having her close by. We had other friends and family visit, and more who wanted to visit, but I just wasn’t up for it. I almost never felt up to a visit, but it was always a positive, nonetheless.
So, it’s a new recuperation. I’m still on two antibiotics, and have to give myself a daily injection of Lovenox for the pulmonary embolism. I’m not so great at that yet, but I’ll get the hang of it. My entire abdomen is still quite distended and feels as though organs continue to find their way back to where they belong. I’m learning how to eat again (avoiding feeling nauseous; chocolate Ensure has been a huge help, as well as my Mom’s turkey pie!), walk without the walker (no walker use today, and I even walked outside!), get up and move occasionally (washed my hair at the kitchen sink), and stay positive and strong. I’m so extremely thankful for my family and friends – this is NOT something a person can do alone.
It will be a different kind of Christmas, but it’s times like this that remind you of what’s most important, and it’s not about the gifts and decorations. It’s the chance to gather together and be thankful for the love that you share and the day/days that you get to celebrate as one.
Isolated Limb Perfusion: My Experience 