Recovery help for rare disease called MALS
Donation protected
Hi everyone, I’m fundraising for a rare condition I have called MALS my celiac artery is compressed. Meaning that my artery is being cut off with ligaments wrapping around it. I have been to a few doctors since May when I just couldn’t bare the pain anymore.
I basically got what me and husband feel like the run around. That it’s your gallbladder but in fact it’s not really that. It doesn’t have a high function but that’s because the most recent doctor I saw on 9/28 said that when the celiac artery is cut off from proper blood flow that supplies blood to the spleen pancreas and liver (liver gives the blood to gallbladder) it can cause lower function.
On May 22 I started experiencing horrific pain and my belly button started leaking. I was losing more control over my BMs. I generally use the bathroom about 9-11 times a day sometimes even more. Anything I eat hurts and it goes through me. I have some vomiting and I am constantly nauseated all day and very weak. I’ve lost about 20 pounds during this, I’ve also have endometriosis which doesn’t exactly let you lose weight so easily. Some think oh that’s great but it’s not the way it should be happening. I stay in the fetal position most days. And can only tolerate eating once a day or so because of the pain caused and the heavy feeling in my chest. And I’m eating like a toddler. ANOTHER THING IS that it is sooooooo HARD to breathe! The compression really is debilitating. It’s invisible. You could look @ me some days and be like oh you’re fine but inside my body is like this war going on. ✔️Recently I went and seen Dr Sherisa Warren @ the Cardiovascular Health Clinic in Oklahoma City (OKC) She is on the MALS registry list. I am in Tulsa so it’s not too bad of a drive.
She is the lost absolutely amazing doctor I have ever seen in my entire life. I can’t describe the amount of compassion this Doctor has for her patients. She is literally one in a million!
She showed me how compressed my celiac artery is and it’s even more compressed than I had thought or other drs have thought as well.
She believes in me and my story and has seen all my testing. Abdominal US, plexus celiac block, gallbladder US, HIdA scan. She believes that I need to leave my gallbladder alone (for now) and have the MALS surgery.
⚕️It will be open surgery which is MAJOR because she does not do laparoscopic she would rather be in there with her hands controlling the situation. She is very very thorough yall!
I will be in the hospital for 5-7 days. Some people have stayed about 9 days because of how painful and major this surgery is. Recovery is @ least 6 weeks but can be up to 12 weeks. That means no bending not lifting even a gallon of milk. My household depends on me for a lot of things getting done. I know they will pull their weight but I also know I will need to be cared for during this difficult recovery.
Also meaning that my husband is thinking he will have to take fmla during that time. Fmla doesn’t pay either. And since end of May I’ve been off work. I’m only protected with fmla until November. And seeing how I won’t be back to work anytime soon I worry about how my household will be held up.
I will have surgery before the end of the year. I just have to do 2 test that she requires before surgery so she knows exactly what is ahead of her for the surgery. So I’ll have a stomach empty test with a GI she highly recommends and a angiogram done by her.
The funds will be used to pay for medical premiums and my travel expenses to OKC and back. And for my recovery afterwards with nobody being able to work it will be basically the source of income we will have.
I appreciate if you have made it this far into my story. I never imagined I would be facing something so serious and major in my life but once this is done everyone says it’s like LIFE 2.0
I basically got what me and husband feel like the run around. That it’s your gallbladder but in fact it’s not really that. It doesn’t have a high function but that’s because the most recent doctor I saw on 9/28 said that when the celiac artery is cut off from proper blood flow that supplies blood to the spleen pancreas and liver (liver gives the blood to gallbladder) it can cause lower function.
On May 22 I started experiencing horrific pain and my belly button started leaking. I was losing more control over my BMs. I generally use the bathroom about 9-11 times a day sometimes even more. Anything I eat hurts and it goes through me. I have some vomiting and I am constantly nauseated all day and very weak. I’ve lost about 20 pounds during this, I’ve also have endometriosis which doesn’t exactly let you lose weight so easily. Some think oh that’s great but it’s not the way it should be happening. I stay in the fetal position most days. And can only tolerate eating once a day or so because of the pain caused and the heavy feeling in my chest. And I’m eating like a toddler. ANOTHER THING IS that it is sooooooo HARD to breathe! The compression really is debilitating. It’s invisible. You could look @ me some days and be like oh you’re fine but inside my body is like this war going on. ✔️Recently I went and seen Dr Sherisa Warren @ the Cardiovascular Health Clinic in Oklahoma City (OKC) She is on the MALS registry list. I am in Tulsa so it’s not too bad of a drive.
She is the lost absolutely amazing doctor I have ever seen in my entire life. I can’t describe the amount of compassion this Doctor has for her patients. She is literally one in a million!
She showed me how compressed my celiac artery is and it’s even more compressed than I had thought or other drs have thought as well.
She believes in me and my story and has seen all my testing. Abdominal US, plexus celiac block, gallbladder US, HIdA scan. She believes that I need to leave my gallbladder alone (for now) and have the MALS surgery.
⚕️It will be open surgery which is MAJOR because she does not do laparoscopic she would rather be in there with her hands controlling the situation. She is very very thorough yall!
I will be in the hospital for 5-7 days. Some people have stayed about 9 days because of how painful and major this surgery is. Recovery is @ least 6 weeks but can be up to 12 weeks. That means no bending not lifting even a gallon of milk. My household depends on me for a lot of things getting done. I know they will pull their weight but I also know I will need to be cared for during this difficult recovery.
Also meaning that my husband is thinking he will have to take fmla during that time. Fmla doesn’t pay either. And since end of May I’ve been off work. I’m only protected with fmla until November. And seeing how I won’t be back to work anytime soon I worry about how my household will be held up.
I will have surgery before the end of the year. I just have to do 2 test that she requires before surgery so she knows exactly what is ahead of her for the surgery. So I’ll have a stomach empty test with a GI she highly recommends and a angiogram done by her.
The funds will be used to pay for medical premiums and my travel expenses to OKC and back. And for my recovery afterwards with nobody being able to work it will be basically the source of income we will have.
I appreciate if you have made it this far into my story. I never imagined I would be facing something so serious and major in my life but once this is done everyone says it’s like LIFE 2.0
Organizer
Tiffany Bristow
Organizer
Jenks, OK