Hello everyone. Been awhile since you have heard from me last, just after my transplant. I was wondering if anyone has had a narrowing of the subclavical vein that has narrowed and caused a plum sized pocket of backed up blood in their shoulder. I doesnt hurt, but they may want to tie off my fistula to make the bulge go away. I thought it was a good idea to keep the fistula, so am wondering about it. Any help from you all would be helpful. Thanks,
Yes, I had this post tx. I had noticed it for quite some time but didn't want to say anything! I would ask my neph's nurse to check my fistula, and she always checked the actual fistula down by my elbow crease without checking my neck. Last year at my annual post tx checkup, my tx neph noticed it. You should have seen how her eyes widened! She was alarmed to the point that she insisted I go to a vascular surgeon. I first went to my PCP who referred me to the surgeon, and both quickly agreed that my fistula needed to be ligated. What I didn't tell them was that I could feel my heart flutter from time to time, like there was a big wave of blood coming through that the valves struggled to let pass. Does that make sense? Do you ever feel that?
Anyway, I, too, wanted to keep my fistula for all of the obvious reasons, but all of the medicos I talked to reminded me that these things can grow and are in a less than optimal location. They explained that my cardiac health was being compromised. I reasoned that I didn't want to succumb to some stupid, easily fixed fistula problem after going through the whole transplant "experience".
So I had the damn thing ligated, and I feel ever so much better. Ligation fixed the problem entirely.
Yes, there is the risk that another fistula may need to be created, but then maybe that won't happen. Sometimes you have to sacrifice the possible future for the definite now.