Hi everyone,
I’m hoping to get some insight or hear from anyone who’s had a similar experience.
Late last year, I was diagnosed with a pulmonary AVM after incidentally finding on a CT scan whilst getting imaging of my kidney. A few weeks prior they had found a small tumor on my kidney, also found incidentally while getting imaging of my liver as I had increased liver enzymes. My GP says I’m the king of incidentalomas.
As you can imagine this has been a lot all at once. In December I had a partial nephrectomy to remove the cancer from my kidney, thankfully it’s stage one and surgeons seem happy. The laparoscopic surgery went well
The surgery leaves you fatigued, I was told 4 weeks off work minimum. About two weeks after the surgery, I had a sudden episode where I lost feeling in my hands and legs and couldn’t stand up, felt really dizzy almost like I was having a panic attack and found it hard to breathe. It sounds dramatic but it felt like I was fighting to stay awake and if I passed I would die. Paramedics called and admitted to the ER. They ran a bunch of tests but didn’t find a clear cause but kept me for 2 days obviously concerned it was something post surgical. Since then, I’ve been dealing with chronic fatigue that’s really been affecting my day-to-day life—despite getting good sleep, eating well, and staying hydrated.
I’ve also have a lot of abdominal pain, I’m seeing a phisiotherapist and that’s helping, but it’s a long road ahead and my kidney doctors have no clue as the scans are all fine. I’m back to work part time but some days I’m completely wiped out mentally and physically.
I’m trying to figure out if this fatigue might be connected to the pulmonary AVM, a lingering effect from the renal surgery, or something else entirely; my liver enzymes are still elevated but not as bad as they were. The liver doctor was going to biopsy but as they’re coming down he’s waiting another couple months.
I’ve been able to work through the various doctor referrals and get a bubble study echo, It showed I have an interpulmany shunt (grade II). I have HHT genetic testing booked for a couple weeks and an appointment booked with Dr Trerotola at university of Pennsylvania hospital, luckily I live in Philadelphia! I don’t know how big the PAVM is, the scans don’t specify, but to my untrained eye it looks the size of a quarter and it’s at the bottom of my right lung. Some of my pain is there, but then again that could be my liver. My kidney surgery was on the left side which still feels sore but not so “stabby” like the right side
In November I was a perfectly healthy 48 year old guy, going rock climbing and 60 mile bike rides. Now I’m in bed a couple days a week and walking like an old man. I’m really hoping that I can get a coil put in and I’ll instantly feel fine, but I have no idea if this is just a really bad post-op from the cancer something wrong with my liver, or the PAVM, or everything!
I don’t suppose anyone else will have had the same problems as me, but I’d appreciate the support regardless as often I feel like I’m losing my mind. Therapy has helped
Thanks so much for the support.