One year ago today I was released from a three and a half week long stay in the hospital following endometriosis excision surgery and complications. Tim and I “celebrated” it with an (hopefully last) echocardiogram. If you’re new to following my journey, you can read more entries here. But today I want to share with you my experience of finding someone who was going through the exact same journey at the same time. No matter how rare of a situation you might be going through, you are NOT alone. I know that having the support of dear friends as we travelled together on our endometriosis journey has helped me get through some of the roughest days of my life.
Traveling for Surgery
Two years ago I had my first surgery for endometriosis. Last September I traveled from Missouri (USA) to Milwaukee, Wisconsin (USA) to have excision surgery from one of the best excision specialists in the world. During my initial excision surgery, my bowel was injured so I had to stay longer than the “less than 24 hours” I was initially told. My doctor said that I was his “benchmark” patient – that he had never been faced with such a horrible case. He told me that he was able to save about 20% of my remaining ovary (I had previously had another endometriosis surgery that took an ovary and tube) and the uterus looked healthy but couldn’t find my remaining fallopian tube. Our chances of conceiving naturally were over.
Longer Than Expected Hospital Stay
Because of the bowel injury, my stay was expected to last an additional couple of days. However, that changed the second night I was in the hospital. My husband had just left when the nurses came into my room and told me that I was being moved to ICU because they believed blood clots had formed in my lungs as a result of my surgery. I was moved to the burn unit – because that’s where they had room. About a day after being in the ICU, doctors began to be concerned about the output in my JP drain which had been left in to drain fluid after surgery. It continued to have output that was more watered down than it should have been. I didn’t know it but one of the doctors had sent the fluid off to be tested. It turned out to contain urine.
I was sent for a CT scan and my ureter injury was discovered. A stent and nephrostomy tube was placed in the radiology department under local anesthesia. The plan was to leave the nephrostomy tube there for a couple of days to see how it healed.
I continued to be monitored for all of the new issues. It was decided after a week of the nephrostomy tube and more x-rays that the leak was still there and I would undergo another surgery and if that surgery was successful I could look forward to leaving the hospital as soon as they felt we had a plan for treating my blood clots and I was up to the drive home. My initial surgeon was out of the country (likely doing Joanne’s procedure) at this time so his partner, my urologist, and other gyn team members were present. They removed scar tissue and cleaned up some other areas during this surgery in addition to working on the ureter.
Unfortunately that second surgery didn’t repair the ureter and I was told I just needed to give it time to heal itself. Recovery from this second surgery was MUCH harder than the first. Despite the complications, I felt pretty good after the initial surgery. This time I was miserable – I think most of it was that I was an emotional mess! I remained in the hospital for another week and a half or so to see if the ureter injury had healed. It did not.
I was in the hospital from 9/17/2015 through 10/10/2015 and was sent home with a nephrostomy bag attached to one leg and a foley catheter attached to the other. I remained at home for the rest of October. It was during my time off that I found Joanne who had posted on another endometriosis support Facebook group about a ureter injury. I don’t even think she mentioned her doctor in our initial conversation on that board. It was when we started chatting over messenger that the similarities started sticking out – I’ll talk more about that later.
Teaching With Bags
I teach Kindergarten – 5th grade music and returned to work with the bags for the month of November. I found a local urologist and an interventional radiologists about 90 minutes away from me who I visited a couple of times – with the end result of “it’s still leaking.” The local urologist and I kept in touch with my Milwaukee team throughout it all. Everyone still said, “it will probably heal on its own…it just needs more time” but I needed my “normal” life back. The initial surgeon in Milwaukee insisted on being there for this procedure. It was scheduled for November 30, 2016 and I was told that I should be well enough to conduct my Christmas musical at school on December 10. I came out of the surgery wonderfully…and bags weren’t needed anymore! The stent remained until mid-January where it was removed and a follow-up CT scan was performed in April. I also was able to discontinue taking blood thinners in April as my pulmonologist (and rheumatologist) had run enough tests to determine that there was no reason to believe there was a genetic reason for my blood clots. I have (hopefully) one remaining appointment with the pulmonologist and if my most recent echocardiogram is normal, I will be released from her care.
A Friend On The Other Side Of The World
When I came across Joanne’s post in late October 2015, I couldn’t believe that there was someone else out there who was going through the same thing. Then when we chatted some more and found out that – despite being across the globe – we had had the same surgeon, close birthdays, supportive husbands, and fur babies to take care of. If I was having to go through the roughest days of my life…so was she. I wouldn’t wish this experience on ANYONE but to know that there WAS someone else out there was godsend. I knew that if I wasn’t able to sleep because I was in pain or uncomfortable, Joanne was just a message away…and was usually awake as well because it was daytime in Australia. Joanne was there to constantly tell me how strong I was. When I worked – and conducted a concert with bags on my legs – I was in warrior-mode and powered through. I saw no other choice. If I didn’t work, I didn’t get paid. I had used up all of my sick leave that I had saved up during my 3 ½ weeks in the hospital and still had recovery at home and the third surgery, recovery, and follow-up appointments to get through. Luckily, my coworkers were willing to donate days that they had saved up to me and I was able to take the days that I needed.