My Medical Trip Back to the Mayo

Hi guys! Unfortunately, I got even more bad news this weekend, and need to head back to the Mayo. Soon. Even more unfortunately, I can't afford it anymore. I maxed everything out getting there this first time. As I was leaving, they were trying to get me in for more diagnosis - they had just found spots on my liver, an enlarged spleen, lymph nodes on my abdomen, and now a hole in my heart.

The money will be used to pay for a vacation rental or hotel, (turns out hotel is cheaper) food, laundry, prescriptions, gas, visits from Doug, and anything else I run into.. I plan to leave Nov. 30 and return Jan 7, so this is a long time. The Mayo requires you to be within a short distance of it, and they are in Jacksonville Beach. Very expensive. They're prefer you stay at the two hotels on their campus, which charge over $200/night!! Where I stayed was the cheapest within a ten mile radius. This requirement is in case an appointment that you're on standby for opens up, or a new, dangerous result occurs, or simply if a doctor orders a lab and they can fit you in that morning.

I will likely be heading out this Sunday - they wanted me starting liver labs this last Friday, but of course I was in Georgia. After all the diagnostics are completed, they'll work closely with Emory to get me into treatment and continue care, only seeing me every few years. However, while we've gotten some findings, only a few have actual diagnosis. 

For instance, my lymphocitic colitis, bone degeneration, spots on the liver, spleen, abdomen lymph nodes, and hole in the heart still need diagnostics and tests.

After the last four years of misdiagnosis, I can't trust local doctors anymore. They've taken my money (in huge amounts) and found NOTHING in the time it took the Mayo to find so many things in just 2.5 weeks.

It would mean the world to me if you can chip in. I am 37, and systems secondary to my sarcoidosis are affected. I don't want Gabe to grow up without a mom. I want to feel healthy again. 

My current diagnosis and findings are:

1. Lymphocytic colitis - cause unknown
2. Sarcoidosis - extremely aggressive and stage III
3. Tubular adenoma - (pre-cancer) in the colon, removed, but a concern for the future. 3 benign masses were also found and removed.
4. Several spots on my liver - cause unknown
5. Bone degeneration - cause unknown
6. Hiatus hernia (pushing up into my chest - needs removed for flute playing reasons)
7. Enlarged lymph nodes on outside of my abdomen - cause unknown
8. Enlarged spleen - cause unknown.
9. Patent foramen ovale (hole in the heart) - caused in the womb. I actually had another one that was caught in 82 and closed.

They were still planning on tests elsewhere - and they KEPT finding things. I can send medical document images if anyone doubts, but not on this forum. I would be eternally grateful.

I'd also be happy for a camper, or any other suggestions. A vacation rental may not work for those long dates.

** Update: They have found sarcoidosis in my heart, which is the most fatal form.