medical bills, health insurance
As all who know me know, I've been suffering with several diseases and have gone through over a dozen surgeries, and countless procedures, over the last 12 years. I have severe chronic pain in my abdomen & pelvis, caused by severe Endometriosis, Interstitial Cystitis, Pelvic Organ Prolapses, Hiatal Hernia, Giant Cavernous Hemangiomas, breast masses, redness, swelling & tenderness, & internal Adhesions everywhere, the worst of which are wrapped tightly around my Liver, squeezing it & gluing it to my ribs, Diaphragm, & abdominal wall. the Endometriosis has spread everywhere, & possibly even into my skin, because I am covered with Petechiael Hemorrhages & Purpura from head to toe. During one of my "Major" surgeries, the surgeon told me beforehand that there was no need for me to do a pre-op bowel prep because she "had never nicked a bowel before". I'd only had "minor" surgeries up till that point & didn't know any better, so I followed her instructions. This surgery was my Hysterectomy, & I was scared, but trusted my Doctor. Woops! When I woke up in the post-op ICU, my Dr was as pale as a ghost & her hair was tousled like she'd been running her hands through it over & over. She completely down-played what happened, & told me that while she was removing a dense Adhesion connecting my Cervix to my Rectum, she had "made a minor defect on my Bowel". When I read the surgical report, I found out the truth; that she had nicked my Bowel & the contents had spilled into my abdominal cavity! The hospital's chief surgeon was called in to repair the damage, stitch & wrap the Bowel, and dump antibiotics directly into my open abdomen to flush out the toxins she had spilled. I was also put on IV antibiotics, required more painkillers, & had a longer hospital stay because of her arrogance. It also may have spread the Endometriosis through my bloodstream, spreading it further than it would've gone if that hadn't happened. Since then, I've had many more surgeries & procedures, from Colonoscopies & Upper Endoscopies, to catheterization several times a week for Bladder instillations, & having needles inserted into the inner sides of my feet by my ankles & attached to a T.E.N.S. unit to send electrical pulses up the nerves into my Bladder! I'm continually seeing specialists, trying to get help with all these concurrent problems and trying to reduce my pain, and I'm working with several excellent doctors now... but it's very expensive! Our health insurance premium is over $1,300 a month, plus copays, prescriptions, etc, as well as the cost of living (food, gas, etc), and our only income is from my husband's job, which pays $12.75/hour. I am still waiting for my SSDI application to be approved, but it's an extremely long process (3 1/2 years & counting)! We are seriously struggling financially & are constantly worried. We also owe thousands of dollars for most of my surgeries, tests, and procedures, and the bills keep adding up, with many more to come. If you can possibly help us, even a little, that would be a huge help! We need all the help we can get! Thank you so much for reading this, and please feel free to contact me with any questions or comments! Much love to all of you!
I have some pics from some of my surgeries, including 4 pics that were taken during my first surgery ever, in 2002. The Dr found & removed these Adhesions between my Uterus and Abdominal side wall. The fact that there were Adhesions in there before I'd ever had any surgery was a clear sign of Endometriosis, especially when combined with my other symptoms... but it took a different Dr doing my second surgery to find a ton of Endometriosis implants, & it was confirmed through pathology! I had previously posted these pics here, but the website removed them because they may be too graphic for some. If you would like to see any of my surgery pics, or if you have any questions at all, please feel free to contact me! :-D Thanks again for taking the time to read this, & for any help you can give us! ♡♡♥♡♡
I have to go to my appointment with the surgeon this Tuesday at City of Hope Hospital to get 2 MRI's, & to schedule the necessary major surgery ASAP... Especially since this thing I have can turn into Cancer. We were counting on this money, and now we're gonna be around $200 short!
If anyone can help us at all, PLEASE help us with a donation... I AM BEGGING for your help!!
Thanks everyone... I hope to have some good news to share with you soon, instead of always having more bad news!! I'll try to keep my smile!
Michelle & Zach
My current diagnoses are: Stage IV Endometriosis, Diverticulum of Urethra, Fibromyalgia, Interstitial Cystitis, Pelvic Organ Prolapses, Chronic Fatigue, Adhesion Disorder, Hiatal Hernia, Liver Mass/Hepatic Hemangiomas, Levator Spasm, Chronic Mastitis, Hypertonicity of Bladder, and a few other more private diagnoses. I also have had several positive ANA tests, and the Rheumatologist thinks it's possible that I have Lupus as well... We'll hopefully find out very soon!
Unfortunately, I have been suffering with a LOT more pain in my entire pelvic region over the past year, and it keeps getting worse. I constantly feel EXTREME pressure, sharp stabbing pains, cramping & deep spasms, searing pain (like boiling hot water is filling my pelvis), constant nausea, and a lot more symptoms that I can tell u about in private messages (please feel free to ask!)... all in addition to all the chronic, severe pain, fatigue, nausea, vomiting, etc etc etc that I've been dealing with for the past several years.
One of the specialists I've been seeing at City of Hope Hospital just diagnosed me with a Diverticulum of the Urethra... An excruciatingly painful, large, tender mass, which requires a complicated surgery, both to remove it, and to repair the damage around it. It is a rare thing (of course), and it's often missed &/or misdiagnosed for a long time before finally being recognized... which is what happened in my case. My surgeon is having an MRI done in just over a week, and that same day, he'll review the MRI findings, give me info about the surgery, and get it scheduled. All I know so far is that it's a complicated surgery, and that the post-op is a long, painful, difficult one, usually requiring a catheter for at least 10 days afterwards~OUCH!!
I'm also really scared because it can turn into Cancer, especially if it's taken a long time to get the proper diagnosis and treatment. My blood tests keep coming back with really high White Blood Cell counts, and my Anion Gap came back low on my most recent tests, along with an elevated D-Dimer, so I'm more worried than usual. I am hoping and praying that there's no evidence of Cancer, but of course I'm going to worry until we know for sure! But I feel confident that I'm being treated in the best hospital, by the best surgeons, and they deal with difficult cases like mine all the time; so if there's any evidence of Cancer, that's the best place to be!!
I also had surgery there about 6 months ago to attempt to slow or stop the growth of a GIANT mass in the left lobe of my Liver. There are 2 benign masses there, and they've been growing very slowly over the last decade or so, but then the bigger mass suddenly started to grow SERIOUSLY FAST... It jumped from around 6+ cm to 10+ cm in under three months!! The surgeons at City of Hope did an Arterial Embolization, where they used tiny spheres to block the blood flow to the mass. After 3 months, it was only a little bigger, so it did slow down the growth, but it's still hurting, and they're concerned that it may have already found a new source of blood, so they may have to repeat the procedure, or do major surgery to remove that part of my Liver. Also, there are still those very dense Adhesions all over the outside of my Liver, squeezing it and gluing it to my Diaphragm, Ribs, and Abdominal Wall again. These will have to be removed again at some point, but we're hoping to wait until they can do it while they're doing another abdominal surgery.
This latest development of a Urethral Diverticulum is another problem that is found more often in women who have already been diagnosed with Endometriosis. Also, my diagnoses of Interstitial Cystitis, Pelvic Prolapses, Fibromyalgia, Chronic Fatigue, Adhesion Disorder, and other autoimmune disorders are commonly found to coexist in women with Endometriosis. It truly is a TERRIBLE disease!
Many people don't know this about me, but before pain became so bad that I had to stop working, I was an incredibly active person! I took surfing lessons, went to concerts, swam in the ocean, walked everywhere, spent time with friends, and even took sailing lessons... all the way from basic sailing (in what was basically a bathtub with a sail), all the way up to advanced sailing on a J-24 Keelboat, and even got my sailing license; I would regularly rent a boat for the day and take my friends sailing around Mission Bay in San Diego! My disabilities have taken all of this from me. I now can barely sit up in a chair, let alone stand out walk for more than a few minutes before having to lie down because of the severity of my pain.
I'm still waiting for my Disability to come through; my case is supposed to finally go back to court in about 5 months, I hope and pray that I finally get some good news!! After more than 6 years, we need it SO BAD!!
In the meantime, we could use all the help we can get!! We are barely scraping by on Zach's income alone, and it's getting more and more difficult... Especially with things like our insurance no longer covering certain medications, and monthly expenses going higher and higher. If you're able to help us with even the smallest donations, we would appreciate it so very much!! Even $10 would help us SO MUCH right now!!!!
Thank u for taking the time to read my update, and I am grateful to have so many supportive family members and friends sending me all the positive energy and healing thoughts and prayers!
Michelle Baranek (Shell)
I'm sorry it took me so long to write an update... I'm nauseous so often now, it's hard to type on my phone for more than a few minutes at a time.
On July 1st, I went to the ER for chest pain that felt like a horrendous pulled muscle, although I hadn't done anything that could possibly cause a pulled muscle. After an EKG made sure that my heart was ok, the Dr took blood, did a Chest X-ray, and brought me in for a CT Scan of my chest and abdomen. He was concerned because my blood work showed an elevated D-Dimer, which can mean there's a blood clot, and since I was having chest pain, he wanted to check my lungs for a possible Pulmonary Embolism. Fortunately, they didn't see any blood clots in my lungs, and diagnosed me with Costochondritis, which is a painful inflammation of the cartilage that attaches the ribs to the breast plate / Sternum. It takes 6 weeks or so for it to get better; in the meantime, it just takes time, ice, and management of the pain. That was the GOOD news.
The bigger and far more serious problem is these 2 tumors that were found in my Liver 10+ years ago. They were growing very slowly over the years, but suddenly, they've started growing EXTREMELY fast; the larger tumor went from 6.8 cm in mid-March of this year, to 9.8 cm × 9.1 cm on July 1st... only 3 months later!! It's GIANT!! And the second tumor, that was always around 1.7 cm, suddenly jumped to "at least 2.5 cm". The Dr's think they're probably benign "Hemangiomas", but those normally don't suddenly start growing extremely fast. It's been causing a LOT more pain, swelling, hot flashes, and intense daily nausea. Zach brought me to a Dr at City of Hope last Friday, and the Dr said that I need to be EXTREMELY careful because once they're this big, they can spontaneously rupture at any time, even without any trauma to the area!! He also instructed me to be very careful when riding in cars, being around kids and pets, and I'm absolutely not allowed to lift anything heavy at all! If I have sudden severe, sharp pain, or if I'm even in a minor fender-bender, I have to go to the ER immediately or call 911! Also, both of the tumors are in my Liver's Left Lobe, which is much smaller than the Right Lobe, and the outside of my Liver is also completely covered in Adhesions (again), which is putting extra pressure on those masses. I'm usually pretty good at keeping calm and trying not to worry, but this has me absolutely terrified!! I'm so scared it's going to burst in the middle of the night! I'm also really scared to have this major surgery, even though I know I'll be in the best hands at City of Hope...it's such a frightening situation!!
The Dr I saw last Friday referred me to a Hepatology Oncology Surgeon at City of Hope ASAP to discuss the surgery to remove the tumors (and probably remove part of my Liver, since both of them are in the Left Lobe). The good news is that the Liver regenerates...so mine should heal afterwards, it just takes a while. However, the complications caused by the severe adhesions on the outside of my Liver make it an even riskier surgery, since they're wrapped all around my Liver and gluing it to my Diaphragm, Ribs, and Abdominal Wall! Aaack! The Liver is so very vascular, and the risk of excessive bleeding is already high just to remove the Adhesions, so it's gonna take a very competent surgeon to do this right.
My Dr had the lab take blood to look for tumor markers to make sure it's not Cancer or anything else scary! He also ordered a special Liver MRI to get a better look, and they're getting the original images from the CT Scans in March & July to compare with the upcoming MRI.
Unfortunately, they weren't able to get me in for the MRI on the same day as my appointment with the Hepatology Oncology Surgeon, so we'll have to drive down there at least 2 more times in the next 2 weeks, and then again for the pre-op appointments and the surgery itself. It's about a 3 1/2 hour drive; more with traffic, and unfortunately our car is in need of extensive repairs and can't make it that far, besides the fact that it doesn't have A/C or a radio, so we have to rent cars for every appointment. We would love to trade in our older vehicles for a newer one that will be reliable and comfortable, but we need some serious help with the down payment and financing, since I'm still waiting for my Disability claim to be approved (going on 6 years now), and we're scraping by on Zach's income. If we can come up with at least $3,000, we can probably get a newer vehicle that will be comfy and reliable for all these long trips to the Dr's, and not have to keep spending money we can't afford on rental cars. I can't stress how important the comfort part is, since sitting in a car for more than 15 minutes at a time causes my pain and nausea to go through the roof!!
If you're able to make a donation, any amount would be very helpful!! We are so grateful to everyone who is reading this; all the kind, positive words and prayers are so helpful as well! ❤
As for my "usual" issues, the Dr's also believe I have more Adhesions on my Bladder, and it's possible that the Pelvic Mesh is causing problems as well. With my severe Endometriosis, and a really bad case of Interstitial Cystitis, they will remove the Adhesions as necessary when they become problematic (like if they cause obstructions or twist my bowels again)...but otherwise, it's pretty much at the point where all we can do is try to manage the severe, chronic pain. I had an unsuccessful pain pump trial in January, which caused severe spinal headaches from the Cerebrospinal Fluid leaking, and I ended up needing an Epidural Blood Patch at the ER (after trying to tough it out for 2 weeks...ugh, I always do that!)... But they're gonna try again, using different medications, and they're gonna do an Epidural Blood Patch when they put in the spinal catheter for the 2nd pain pump trial to try to prevent the spinal headaches this time... The trial lasts for a week, with an external pump in a kind of fanny-pack, with a catheter leading into the epidural space in my spine, where it will deliver pain meds directly into the epidural space. The pump is a bit scary too... I'm not sure if I want to go through with it, as there have been a lot of cases of serious life long problems from them... while some people have been helped greatly, others have been injured very badly, and some have even been paralyzed from the catheter tip breaking off and floating around in the spinal canal forever!! To anyone out there who has a pain pump, or knows someone who does, I would really appreciate any advice or feedback!
Thank you for taking the time you read this, & if anyone out there wants to ask me anything at all, or if you just want to say hello, please don't hesitate!
Love to all,