Help a Maine Farmworker Receive Surgeries in GA

Hi, I’m Izzy Ruffin and I am a Maine farmworker and Ag service provider for the state. I was born in Maine and have lived and worked full time on farms in Maine for 6 years now — most recently the last few years on a wild blueberry and flower farm (Lost & Found Farm in Dresden & Gray, Maine!) and a diversified dairy & livestock farm (Winter Hill Farm in Freeport!). I also spend my time as a grant manager for the Maine Farm and Ranch Stress Assistance Network — a $500,000+ for farmers and farmworkers of land, forest, and sea, focused on mental and well-being. I also recently graduated my masters program from the University of Maine this past May. My capstone project is on hold as I figure out medical stuff, but it is on Understanding the Role of Resilience in Maine Agriculture through Place-Based and Culture-Centered Methodologies (thanks to all who contributed). Resilience isn’t possible without community, or vulnerability. Hence my being vulnerable and asking for help from my community.

I’m currently facing some health challenges related to endometriosis and adenomyosis. I am also suspected to have diaphragmatic and thoracic endometriosis. I am seeking funds to help cover some immediate medical costs I have coming up for one of two surgeries I am planning to have in Atlanta, Georgia. The first surgery is in a week's time: May 22nd! Insurance will not cover this surgery so I have to do it self-pay. I have secured a loan but would like to not be in a lot of medical debt from these surgeries.

Update 5/18:

I received an additional bill that I need to pay to Northside Hospital in order to receive the surgery I need. I was under the misconception that I was to be billed afterwards from the hospital. However, that isn't the case. Because I am self-pay, it is a similar deal to the CEC. I have to pay a deposit upfront. The surgery is significantly reduced in price because I am self-pay, so that is good news, just like the CEC's. I have the option of submitting 75% deposit at $16,250 and then I have a month to pay the remaining 25% -- which would be roughly $21,666.66. My other option is to pay 65% deposit of $7,583.33 and then make four monthly payments of $3,791.66, totaling $22,749.97. Similar to the CEC, if the estimate is above the minimum, I will be billed for the rest, but then it will be on a payment plan. I was able to secure another loan for the 65% -- $7,583.33. Again, I am hoping to not be in terrible medical debt from these procedures I desperately need. And I would like the procedures done right because having a surgery in-network from a regular OBGYN is what got me here in the first place. I still have not heard what the estimate may be from pathology and anesthesia, but it isn't a bill I will owe up front, so I am slightly less concerned at this time.

Thank you so much for all of your donations and shares so far. If you are able to continue donating, sharing, and spreading the word, please do so. I am so touched and honestly, you all are the only reason I am able to do this. In many ways, you are saving my life. Thank you for doing so. I will continue to keep you all updated on this process. I was reminded today at my pre-op appt how smart of a decision it was to separate these surgeries. This is a painful surgery to heal from. The diaphragmatic and thoracic surgery is even more painful. Dr. Eugenio Colon reiterated that it was the right decision. It also makes it more likely for Insurance to cover the other surgery. So again, not ideal, none of this is. I wouldn't be here if I didn't have to be. I should've been here four years ago. I'm grateful everything / everyone pointed me in the direction of the CEC. Continually reminded that I am in the right hands. Will be back in Maine soon in between surgeries and I hope to see many of you near and far. That has been a true gift of all this -- all of the connection it has brought me and reconnection, too. Just another example of how connection is at the heart of what makes resilience possible.

Update 5/15:

I already have a number of ER bills and financial assistance forms I am trying to fill out in order to have them covered and have spent the last year dropping soo much money on my health. Right now, the estimate for the surgery is $10,500-$14,500 for Dr. Eugenio Colon's portion, which does not include the separate pathology bill and anesthesiologist bill. Because it is a private practice, there are not really financial assistance options -- self-pay is actually highly discounted. Once I know the other pathology and anesthesiologist bills, I can add them to the gofundme. For transparency, I have already paid $1,750 to the Center for Endometriosis Care -- $250 for 3x telehealth visits, $500 for an in-person visit, and $500 for a surgical deposit. On top of that, I paid $900 in plane tickets for me and a friend because I needed care at that time and couldn't travel alone and $500 to rent a car. These are just some of the costs I have already paid within about a 2 or 3-week period. I am also on unpaid FMLA with my part time job, so I have no current income. With self pay, I owe $10k by the pre-op appointment, which is Thursday, May 18th. I feel lucky to have gotten a loan, and to this time be able to drive down to Georgia, have friends meet and accompany me to surgery and post-op healing, and have some good farm family friends who are kindly lending their house for me to stay and heal. Plus, they're the best cooks, the best company, and listen to some good music. Perks. I'll take them where I can get them. :-)

This has all been a lot. Like truly so much. I’m honestly not sure how I’ve been managing or holding it, which is a question people keep asking me. I think that knowing I will have these surgeries and feel better soon is a big motivator. Another is all the people — near and far, old friends and new, strangers and kin — who have been so supportive and positive. In all the ways, small & large.

Thank you so much to anyone who is able to donate at this time. A little goes a long way as we all know. Anything over the amount will go towards other medical costs, travel costs, or to help pay the friends or family who help me out during my healing. This is primarily for the first surgery, but there may be overflow to other medical costs or to the second surgery. I will post updates here as they come in.

See below for a little bit longer story of how I got here, as well as some definitions.

Thank you again. Words can't describe how lucky I feel to know so many wonderful, kind and helpful people. I love the community I'm in and the many I've been apart of. I hope to return this summer healed and ready to dive back into some good farm work and good dancing.

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My story, as short as I can make it (what can I say I'm a person of many words):

This has been a long battle where symptoms started over 14 years ago with pain and irregular bleeding related to my menstrual cycle, as well as catamenial (meaning onset of menses) leg pain, hypertension, chest pain, difficulty breathing, and throat pain/infections. Nearly all ailments I've ever had seem to be tied back to endometriosis in some way. I was first officially diagnosed with endometriosis 4 years ago in May 2019 when I had my first laparoscopy for endometrial ablation (cauterization of the tissue), where they also removed a cyst from my ovary. This was after a year of feeling sick to my stomach and being in chronic pain without knowing what was going on. The doctors performed all the imaging they could in order to eliminate other pelvic related causes (cysts, fibroids, etc). Endometriosis does not usually show up on imaging. So once it revealed nothing and my OBGYN at the time explained to me the risks of going in for exploratory surgery, and I agreed, they did so. It's one of the harder things about this disease -- there are no guarantees, and going in for surgery is the only way to find out what is going on.

My first endometriosis surgery is one of the reasons I am in the position that I am in today. I didn't know it at the time, but I know now that ablation is considered to be an outdated practice for endometriosis and the use of hormonal therapy, which I had been on for over 13 years, does not make the endometrial lesions less likely to spread. In addition, no pathology was done, and no imaging was taken. I wish I knew then what I know now -- I was just happy to receive a diagnosis and hoped to be in less pain.

I've spent the last three to five years in chronic pain. Significantly so in the last two years and even more so in the last year. The past few months symptoms rapidly increased, day to day, week to week. I was in at times excrutiating and debilitating pain -- pelvic pain, bladder pain, sciatica pain, leg pain, neck and back pain, migraines, dizziness, having partial seizure episodes, chest pain, difficulty breathing -- let's just say it was not fun. I feel thankful to have Gabbapentin on board to help manage the migraines, partial seizures, nerve pain, and just generally keep my central nervous system a bit more calm.

My original laparoscopy was scheduled with my provider in Maine. Once it was suspected that I have diaphragmatic and thoracic endometriosis, my provider cannot help with that and didn’t know anyone who could. After many calls to many places in Maine and beyond, they all pointed me to one place: the Center for Endometriosis Care in Atlanta, Georgia; I got set up with the CEC, and my surgeon is Dr. Jose D. Eugenio-Colon. The thoracic surgeon (the only doctor in the entire country who performs thoracic endometriosis cases) is through a nearby hospital, Northside, and is Dr. John W. Gouldman.

I am looking at sciatic endo, endo of the bowel, bladder, pelvis, the diaphragm and of the thoracic cavity. Thoracic endometriosis is where the endometrial lesions on the diaphragm cause fenestrations (holes), perforating the diaphragm and the endometrial tissue is able to get into the thoracic cavity. Thoracic endometriosis cases have had endometriosis found in places like the diaphragm (from the top), phrenic nerve, lymphatic fluid, pleural space, heart, lungs, and even make its way to the nasal cavity or in extremely, extremely rare cases the brain. Most often in thoracic endometriosis cases, it is just found on the top of the diaphragm or near or on the phrenic nerve. I won't know if and where the endometrial lesions are until I'm in surgery. They will explore most areas and excise (cut out) any endometriosis that they see and send it in for pathology. They are very skilled, very thorough doctors. The best in the country. I feel thankful to have found them, just wish it was sooner.

Recent pelvic ct revealed cysts all over both of my ovaries, indicating a very severe stage of endometriosis (endometriosis on the ovaries are called endometriomas or chocolate cysts, depending on their size it is considered stage 3 or stage 4). A recent pelvic sonogram revealed that my left ovary is adhesed to the back of my uterus and that I have significant adenomyosis. Adhesions indicate a severe stage of endometriosis. Adenomyosis is where the endometrium grows into the muscle wall of the uterus. It causes a number of pain symptoms I’ve already been experiencing & contributes to infertility and people with adeno are at higher risk for so many labor and pregnancy conditions. The only cure for adenomyosis is a hysterectomy, though some pain management is possible.

Given that I would like to have a family myself someday, I chose to postpone the hysterectomy; but it is in my 2-4 year plan to have one. A decision I didn’t necessarily think I’d have to be holding at 27. I do feel thankful to have a doctor who will do all he can to make a future for me possible, and is upfront about the risks, and does not push anything on me. True patient centered care is kind of refreshing, which is a sad reality to be honest.

Right now, I’m taking estrogen to “wake up the endometriosis” in my body. It is essentially like fueling the fire. The goal of taking estrogen is to make the nodules of the endometrial lesions more visible (there is a root and a nodule). This will allow for the most successful surgery to be possible, and hopefully prevent me from being on their table again soon. Taking estrogen causes more pain. I feel thankful that Gabbapentin has kept me feeling ok right now, but pain levels are on the rise. I feel thankful I will be able to make it to the May 22nd surgery, in order to have a second surgery sometime late June. I will have that date nailed down.

In terms of my original surgery with the CEC, I was set to have one surgical time with the two different surgeons. But when the surgical scheduler called me Friday May 12th, the soonest they could fit me in is very end of June, which is a lot later than anticipated/than they said. they are working with three different schedules — Dr. Colon’s, Dr. Gouldman’s, and the hospitals surgical time — so that is why it was much later, sadly. So what I ended up doing because of that is splitting surgeries, which is an option Dr. Colon and I had talked about prior. I will go in for the first surgery May 22nd. My pre-op appt is Thursday May 18th at 9:30am. At that surgery, Dr. Colon will do the gynecological operations — look at my sciatica, bladder, bowel, pelvis, deal with my adenomyosis, cysts on my ovaries and un-adhese my left ovary (it is currently fixed to the backside of my uterus), cut out any and all endometrial lesions seen, then place an IUD. That should give me some pain relief (obviously there will be pain from surgery healing, too) but it will allow me to make it to the later date, the second surgery, with Dr. Gouldman and Dr. Colon. At that second surgery, they will perform the diaphragmatic and thoracic exploration and operation, cutting out any endometrial lesions they see. Because I’m doing this, my case is transferred to Dr. Gouldman with Dr. Colon assisting and they are going to give me a new date — it could be end of June or it might be a touch later. It’s kind of confusing but best way to describe it is that previously my case was with Dr. Colon with Dr. Gouldman assisting. Because I’m splitting it, I now have two cases. One with Dr. Colon (first surgery) and the other with Dr. Gouldman with Dr. Colon assisting (second surgery). It will be more expensive this way, but I don’t have much of a choice because with pain I could not see making it until end of June, especially with taking the estrogen and “fueling the fire” as they say. May 22nd will mark close to 30 days on estrogen so I will have almost made it to that goal and they indicated that was not an issue that I didn’t. I’ve started a gofundme for this first surgery, as insurance won’t cover it. This is because I could get the gynecological operations done in network — but at this point it would take months to weeks to get another surgery on the books in network anyway. I’ll be following up with my insurance company for the second surgery, which will likely be approved for out of network benefits. I have secured a loan for 10k that I will owe at the pre-op appt because I am self-pay. The gofundme is available to cover the cost of paying back that loan, and additional medical, travel and care costs. I received an estimate for the surgery, so I have an idea of what is required. The second surgery there is still hope insurance could cover it because Dr. Gouldman is the only doctor in the entire country who performs thoracic endometriosis cases, so my insurance will likely approve a one time case of out of network benefits. It’s not ideal how I’m doing it—it means more healing time, and more surgeries, and more expenses, but at this point I’m not left with many options, and need to be in less pain than I am in time in order to have the thoracic and diaphragmatic surgeries later in the summer. Been a rough go… And this was an option that I’d talked about with my surgeon, Dr. Colon, who I now have built a trusting relationship with. And plus, if I'm going to get the surgery, I may as well do it right, with the best doctors in the country.

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Definitions: All taken from the Center for Endometriosis Website: