Non Cancer Related Pulmonary Embolisms & Gene Disorders
Hello! Is anyone here being treated at Mayo for non-cancer related PE's that are due to genetic conditions?
I had an incidental finding of PE during an ER visit for anaphylactic shock after penicillin exposure while traveling in South Florida. It was due to a horrific tooth infection that lasted weeks and needed a stronger antibiotic, failed root canal and lots of trauma with my tooth.
I then followed up with the ER hematologist there that is convinced it was the result of histamine release caused by amoxicillin reaction not necessarily anaphylactic and felt the PE was caused by multiple risk factors piling up together.
Further testing by him showed I have a rare genetic disorder related to the PAI-1 gene particularly the 4G variant (Serpine1 gene).
Anyway, I am now on blood thinners for life and want a second opinion as they now don't really know what to do with me.
Is it okay to go to Mayo Clinic to talk to a hematologist about this supposed genetic disorder. This happened in 2022 and in 2024 I saw a doctor closer to me in Central Florida to switch, and he felt it was all unnecessary and probably not going to happen again, didn't seem too interested in guiding me and just said "stay on blood thinners" " I don't want to be the one to determine this" and kind of blew me off.
Once and for all, I need a second opinion and was going to come to Mayo to determine what happened and don't want to go to another local doctor. The South Florida Hematologist is EXCELLENT, I just want a second opinion before continuing care with him and driving there annually. Mayo in Jax would be more convenient too.
Bottom line question-is it okay to come to Mayo for a 2nd opinion if it's not cancer related?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hello @robynlee68 and welcome to Connect. Absolutely, it’s ok to request a 2nd opinion from Mayo Clinic for a non cancer related issue. The hematology department specializes in blood conditions as well as blood cancers so that could be an excellent resource for you.
Here is a link to get the process started for requesting an appointment. http://mayocl.in/1mtmR63. Follow the prompts on the page for New Patient and take it from there! You’ll be able to select Mayo-Jax as the campus you’d like to visit.
Do you have any side effects from taking the blood thinners?