I thought I was done. It's been three and a half years since the last time I wrote here. Since then I've changed jobs twice, moved once. Lost an old friend. Gained some new ones. Lost some pets, gained some new ones. Life has been mostly good. Still fatigued a lot of the time, and it seemed to be worse lately. Now we know why.
On May 28 something really weird happened - the weakest part of my big scar from the reconstruction and hernia operations blew out. I didn't know that could happen. It's been healed for over three years. The skin looked stretched out like a popped blister, I might not have known there was a hole there at all except that it leaked enough fluid to completely soak through my pants and my shirt. No blood, just clear, slightly yellow fluid. No new pain. It was Tuesday night and I felt fine, so we decided to go to urgent care in the morning. It continued leaking all night.
We spent the whole day there and they did a CT scan that indicated cellulitis in my abdominal wall, but no big pockets of fluid, just small amounts scattered around my abdomen. Since I seemed to be fine they gave me Keflex (antibiotic) and said that it should clear up the cellulitis and that might stop the fluid buildup. The hope was that it would heal over and that would be the end of it. They also referred me to one of the surgery clinics at Highland in case it didn't.
I took the antibiotics, it did slow down and then heal over. 72 hours after I finished the antibiotics the fluid built up again and the new scar blew out. This time there was some blood in the fluid and the hole was about the size of a pencil eraser. I went to the urgent clinic at my GPs office and one of the docs there poked around, literally, with one of those giant q-tip things. She didn't know what to make of it, but I had already made the appointment at Highland for July 9 and she didn't want to give me more antibiotics if we weren't sure I needed them.
Nine days later, the fluid turned cloudy and viscous, and I went back, but there's still nothing she could pinpoint. She did a culture and it came back with "scant" amounts of all the normal stuff she expected to see. So I just kept changing bandages and waiting for July 9.
Bob took the day off work so he could go with me. The surgeons there looked at my scan and said they think the mesh that was used in the hernia repair is infected and it needs to come out, and that this would be a "multi-stage" procedure. They put me back on Keflex to help keep it under control.
I mentioned that I'd also been thinking about doing a bariatric procedure (sleeve gastrectomy) and they said if I could get that done first, it would would help my recovery from the mesh procedure, which makes sense. Less weight would mean less pressure on the reconstruction, and also less risk in the bigger surgery overall. But they don't do that there. (And while they were lovely and professional, no way in hell would I want to be a patient there unless I had a bullet or ten in me.)
We all agreed that going to UCSF or Stanford would be the best choice. Both managed to squeeze me in this week, via their breast cancer and reconstruction clinics since I've been a patient at both.
Stanford was Tuesday. I really liked the surgeon. (https://profiles.stanford.edu/rahim-nazerali)
I really didn't like what he had to say - they have to cut the mesh out with wide margins to make sure they get it all. Since the muscle grows into it (by design, that's why you use it) it doesn't show up on scans. Also, there are two pieces, not just one. Apparently Sbitany used it to close main incision after the hernia repair as well. It all has to come out, which means most of the right side of my abdominal wall has to come out.
He said that due to how extreme the surgery is, he wants me to see the Infectious Disease clinic first, to see if there's anything they want to try. He also said that the first thing they'll tell me is to get the mesh out. Overall it's a long shot but better to be thorough.
Thursday I went to UCSF. That's where the original surgery and reconstruction was, but the surgeon who did those is no longer there, he's in New York now.
I've never had the experience of doing an apples to apples comparison of two doctors before - for the same specific problem in the same week. When I had the cancer diagnosis I talked to an oncologist (Wexler) and then went to the tumor board at Stanford for my second opinion. Same problem, but tumor board is very intentionally a different experience.
So, UCSF. I didn't like her at all. (https://plastic.surgery.ucsf.edu/faculty/faculty/esther-a-kim,-md.aspx) She had a student take my history. That's fine in general, to be expected at a teaching hospital, but then she clearly didn't actually read or talk through it. Her take is that it's probably just a suture left behind that needs to come out and that she'd want to just open up the scar as an outpatient exploratory procedure. But then she also said something about antibiotics and healing that told me she hadn't paid attention to what I'd told the student. And she was was just rude.
Bob was on the phone on speaker because he couldn't take the day off to be there in person, and she didn't acknowledge him, at all. It was weird.
I know it's dumb to pick a surgeon (or a lawyer, or a politician) based on who you'd want to have a beer with and I wanted to check that impression against what Bob thought. He pointed out that Sbitany (the original plastic surgeon) was a jackass, but he was thorough and he paid attention. I didn't like the guy either, but I felt he took me and my concerns seriously. She didn't.
So waste of a day, but an easy choice. I'm doing this at Stanford, and I expect to see somone in Infectious Disease this week, hopefully Tuesday.
I feel like crap, and I'm still oozing pus out of that scar even though I've been back on the antibiotics for 10 days now.
On May 28 something really weird happened - the weakest part of my big scar from the reconstruction and hernia operations blew out. I didn't know that could happen. It's been healed for over three years. The skin looked stretched out like a popped blister, I might not have known there was a hole there at all except that it leaked enough fluid to completely soak through my pants and my shirt. No blood, just clear, slightly yellow fluid. No new pain. It was Tuesday night and I felt fine, so we decided to go to urgent care in the morning. It continued leaking all night.
We spent the whole day there and they did a CT scan that indicated cellulitis in my abdominal wall, but no big pockets of fluid, just small amounts scattered around my abdomen. Since I seemed to be fine they gave me Keflex (antibiotic) and said that it should clear up the cellulitis and that might stop the fluid buildup. The hope was that it would heal over and that would be the end of it. They also referred me to one of the surgery clinics at Highland in case it didn't.
I took the antibiotics, it did slow down and then heal over. 72 hours after I finished the antibiotics the fluid built up again and the new scar blew out. This time there was some blood in the fluid and the hole was about the size of a pencil eraser. I went to the urgent clinic at my GPs office and one of the docs there poked around, literally, with one of those giant q-tip things. She didn't know what to make of it, but I had already made the appointment at Highland for July 9 and she didn't want to give me more antibiotics if we weren't sure I needed them.
Nine days later, the fluid turned cloudy and viscous, and I went back, but there's still nothing she could pinpoint. She did a culture and it came back with "scant" amounts of all the normal stuff she expected to see. So I just kept changing bandages and waiting for July 9.
Bob took the day off work so he could go with me. The surgeons there looked at my scan and said they think the mesh that was used in the hernia repair is infected and it needs to come out, and that this would be a "multi-stage" procedure. They put me back on Keflex to help keep it under control.
I mentioned that I'd also been thinking about doing a bariatric procedure (sleeve gastrectomy) and they said if I could get that done first, it would would help my recovery from the mesh procedure, which makes sense. Less weight would mean less pressure on the reconstruction, and also less risk in the bigger surgery overall. But they don't do that there. (And while they were lovely and professional, no way in hell would I want to be a patient there unless I had a bullet or ten in me.)
We all agreed that going to UCSF or Stanford would be the best choice. Both managed to squeeze me in this week, via their breast cancer and reconstruction clinics since I've been a patient at both.
Stanford was Tuesday. I really liked the surgeon. (https://profiles.stanford.edu/rahim-nazerali)
I really didn't like what he had to say - they have to cut the mesh out with wide margins to make sure they get it all. Since the muscle grows into it (by design, that's why you use it) it doesn't show up on scans. Also, there are two pieces, not just one. Apparently Sbitany used it to close main incision after the hernia repair as well. It all has to come out, which means most of the right side of my abdominal wall has to come out.
He said that due to how extreme the surgery is, he wants me to see the Infectious Disease clinic first, to see if there's anything they want to try. He also said that the first thing they'll tell me is to get the mesh out. Overall it's a long shot but better to be thorough.
Thursday I went to UCSF. That's where the original surgery and reconstruction was, but the surgeon who did those is no longer there, he's in New York now.
I've never had the experience of doing an apples to apples comparison of two doctors before - for the same specific problem in the same week. When I had the cancer diagnosis I talked to an oncologist (Wexler) and then went to the tumor board at Stanford for my second opinion. Same problem, but tumor board is very intentionally a different experience.
So, UCSF. I didn't like her at all. (https://plastic.surgery.ucsf.edu/faculty/faculty/esther-a-kim,-md.aspx) She had a student take my history. That's fine in general, to be expected at a teaching hospital, but then she clearly didn't actually read or talk through it. Her take is that it's probably just a suture left behind that needs to come out and that she'd want to just open up the scar as an outpatient exploratory procedure. But then she also said something about antibiotics and healing that told me she hadn't paid attention to what I'd told the student. And she was was just rude.
Bob was on the phone on speaker because he couldn't take the day off to be there in person, and she didn't acknowledge him, at all. It was weird.
I know it's dumb to pick a surgeon (or a lawyer, or a politician) based on who you'd want to have a beer with and I wanted to check that impression against what Bob thought. He pointed out that Sbitany (the original plastic surgeon) was a jackass, but he was thorough and he paid attention. I didn't like the guy either, but I felt he took me and my concerns seriously. She didn't.
So waste of a day, but an easy choice. I'm doing this at Stanford, and I expect to see somone in Infectious Disease this week, hopefully Tuesday.
I feel like crap, and I'm still oozing pus out of that scar even though I've been back on the antibiotics for 10 days now.
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