I am seeking some SOS help as I just received some unexpected news that in order to go back onto my hospice program when I am discharged from the hospital, I need to pay them $6000 coinsurance. Apparently, I have gone over a year without knowing that not all parts of hospice are covered by my insurance, which I pay $1000 for a month just to stay insured. This is all on a disability check that not only is small but also did not come with any backpay as I was one of the quickest approvals they have ever made. Sometimes it can take years and you receive back pay for those months/years; well, since mine was under 5 months, the backpay I counted on did not happen!! I HATE to ask for help but I don’t know what I will do if I can’t get back into my hospice program. For those of you who don’t know my story: it’s a long and sad one that isn’t going to have the happy ever after but will still end with eternal love and happiness.

To sum it up, in 2020 I woke up one day very ill and couldn’t eat without feeling sick for hours and hours. Every day went the same way and within the first 8 months, I had already lost 100 pounds. I had tests, labs, more procedures, and doctor appointments than I could ever count. Then the stomach surgeries started. After each stomach/intestine surgery, I became more ill. Then my gallbladder gave way and all the bile reflux started. I had yet another bowel surgery which again made things worse. I got down to a scary weight for my height and soon they were putting in feeding tubes into my intestines only to have SEVEN, yes SEVEN, fail and recoil back into my stomach. I was put on indefinite lifelong TPN in 2022 when I stayed in the hospital for over 3 weeks! After that, I proceeded to have more and more complications with blood clots, holes in my central line to my chest, SVT, falls, and coded after a major lung bleed. I entered hospice last July as things just became progressively worse and there is no cure or anything else that can be done to improve my quality of life other than management of symptoms.

In November 2024, I started having kidney issues and confusion, blood in urine, and having to urinate every 30 minutes. One night I went down fast where I could all of a sudden no longer talk or walk and my fever spiked to almost 104. My husband carried me to the truck and we were in the ER within minutes where I was diagnosed with septic shock. I was in ICU for several days where I was found to be in stage 4 kidney failure with a GFR of 11; it was over 90 up until then. I have been on antibiotic after antibiotic since then—ones by mouth, shots in the butt, IVs, you name it—but the infection always came back. Last week I went in with severe abdominal pain and was found to have acute pancreatitis, but not only that, the ER doctor called me early the next day and stated I had 4 positive blood cultures! I guess one is typical, but 4 and they are questioning how you are still alive let alone talking. I guess I didn’t realize how serious it was but after some push, I agreed to come in. I had to go to the ICU since I had sepsis with mega bacteria-resistant organisms and was put on one of the strongest antibiotics. I am stuck here until October 2nd having the antibiotic three times a day for three hours at a time. It has thankfully cleared up the infection that I have been unknowingly battling since November.

When I was admitted into the hospital, I had to be discharged from the hospice team and yesterday was told I needed to come up with the coinsurance. I don’t have much time and I don’t even know if payment plans would be an option as this was all laid out for me late on Friday night. The invoices they “sent” me came from Florida, which to my understanding was an error from when we visited Florida and I gave it to the hospice team who also told me to disregard. When this was questioned, apparently they came from Florida because that’s their headquarters. Anyways, I am in desperate need to stay with this hospice team as they are treating me as a hybrid patient while offering me optimal pain control all while still treating what they can but allowing me to live my life to the fullest I can while I can. I have until October 2nd and am desperate or I would never ask! So many, too many, of you have already given and by no means do I want more donations but if you can even share, I would greatly appreciate it so very much! I would never type this on my own but since I am on such a time crunch I don’t have many options.

The first pic is a pic of my decorated room I have had/will have for the next couple of weeks. My great TPN bestie came and decorated it! My first and only visitor with a heart of gold! What will I do without her and her giant heart! The second pic is Axel cuddling in my hospital bed with me wearing an isolation gown. He has had to visit more hospitals than any child should have to and you know what, he is always so intrigued and making sure they are taking good care of me and that I’m okay. I have no doubt he will do something in the nurturing job sector someday.

Anyways, this was long but I hope it gives some context and you can also feel free to text me, Facebook me, or email me if you have further questions about my healthcare journey. I am an open book as I try to create awareness around the awful trifecta of Gastroparesis, POTS, and EDS. There is next to no funding for this disease and therefore there is a lack of any understanding from the healthcare organizations and medical teams. I never thought my life would look like this, that I would find myself in this situation surrounded by the greatest support team. We may be virtual but we are mighty and you all give me the strength I need to fight. Please let me know if you have any questions and or reach out if maybe you or someone you know has gone through this and I might be missing something. In advance, I thank you even if it’s $1.00 or a share. My heart will remain grateful forever and always!