
Beautiful single mom in need of costly procedure
Donation protected
My beautiful and inspiring sister Joanna has been given more than her fair share of adversity in her life. A wholesome Christian raised girl, given an onset of severe health problems starting at the early age of 18, she leads her life in the space of how her health will impact the lives of those she loves the most; her family.
Her drive and dedication to life started when she homeschooled herself through high school. This foundation of independence helped her through many difficult and often lonely times; her first colonoscopy at 18 when the doctors wouldn't let mom stay with her; the day she realized her husband was abusive and still tried to help him and save their marriage; the day she lost her baby twins in childbirth; and the day her friend begged her husband to take her to the ER because she was so thin and weak only to have him to leave her alone and on her own, just to name a few. Over the years she risked her own health, in and out of hospitals, while trying to save a relationship to a man addicted to heroin and be there to raise her baby girl. Finally, when the abuse become life threatening, Joanna bravely packed up her daughter and fled in hopes of a new life.
She’s met a man that truly loves her, and who has taken her daughter in as his own. Although this has given Joanna the emotional support she needs to focus on her health now she is running out of time and her body is starting to shut down.
The doctors at Mayo are great, but they no longer have any answers and are only treating her symptoms and pain, but not the overarching problem.
Unfortunately, this means a much needed trip to Switzerland for a stem cell replacement procedure (the stem cells are harvested from her own blood and cultured and no cells or tissues from any outside sources are used). With the compounded costs of her numerous hospital stays, medicines and loss of time at work, Joanna has one last hope, that you’ll consider helping her by way of financial contribution for her treatment. God has blessed her with a wonderful family, immediate, and extended, and amazing friends. Without them she wouldn't be here today.
Joanna is still pursuing life as best she can and working to become a health coach. Her goal is to help people before they get to where she was. She wants to coach people about lifestyle and preventable diseases and yet one such preventable diseases is addiction and the loved ones the addict affects. Helping people to choose themselves first for the sake of the ones they love most.
This picture is one of Joanna's recent trips to the ER. The doctors couldn't explain why she had blood in her eyes.
If you want to know more here are the specific diagnoses of her health:
Medical diagnosis:
Ulcerative Colitis (UC) with jpouch and chronic pouchitis using long term vancomycin low dose therapy (antibiotic used for mersa)
leukocytoclastic vasculitis:
Not a disease in itself, it's a reaction to a list of items; NASIADs which she can't and doesn't take due to UC; Outside triggers, some reports of bug bites being a factor, can't prove it medically; Other autoimmune diseases. Also can affect joints and internal organs but no way to know which is which for her as all diagnosis can do that, as well as increased risk for skin and other cancers, which all her diagnosis come with that too.
Splenomegaly:
Enlarged speen, about 4x larger, goes down to belly button, due to Cirrhosis, causes low blood counts (platelets, white, red, hemoglobin all of it). High risk of rupture if force hits it, would need immediate liver transplant if that happened, aka flight to nearest liver transplant center like Mayo.
Primary Sclerosing Colanjitis with stage 4 Cirrhosis:
This is the major issue. All others (besides spleen which is directly linked to this) are ones she could live with and have a long life with little to no complications. The above are increased/worsened due to this diagnosis. This is the one in which there is no cure, no drug, no surgery outside of a liver transplant that can help. Her liver right now is stable in stage 4 Cirrhosis. She is not jaundice and has very little acites (fluid in abdomen) so she is not on the cadaver liver transplant list as you need a minimum MELD score of 15 and she's an 11. With that said she could do a live donor liver transplant (take a little less than half of a donors liver and transplant and each grows to almost normal size) right now if she decides to. However that's not without risks and her liver doctor has said the longer she postpones the transplant the better because the 5 year survival rate for liver transplants is 80% and risk of dying from PSC in five years is 0%. Also with transplants you have to take the anti-rejection drugs (steroids which she has not responded to since she had her jpouch surgery), as well as risk for PSC to come back. The other concern is that a donor liver only lasts on average 25 years, which means the need for a second or third transplant. Most of the limited research is based on patients that are males over 50 (more common in older males). The portal hypertension is the biggest issue for her now, the main portal vein is constricted from Cirrhosis and causes blood to flow backwards (upwards) causing esophageal varices which she gets banded off 2 times a year. It causes memory confusion, fatigue, pain, swelling, and insomnia. Most PCS patients deal with this until they can't function any longer and choose to do a transplant. To have Cirrhosis isn't an automatic disability, but if you have portal hypertension with Cirrhosis you are immediately approved for disability. It's on the social security black list of approval.
She also has Hepatic Encephalopathy which is the medical term for brain confusion (what we affectionately joke about her being "blonde").
Organizer and beneficiary
Jael Siekert
Organizer
Princeton, MN
Joanna Dobbe
Beneficiary