Be There For Juliann

As most of you know, my baby sister Juliann Winfree (Friel) is experiencing severe medical challenges. She has been repeatedly admitted to the hospital in Alabama over the last year. Her colon was removed in November and had an ostomy bag placed. She hoped this drastic move would allow normalcy to return. However, this only brought new challenges and side effects. She has been plagued with acute adrenal failure, severe dehydration, infections, high heart rate/low blood pressure. She even required a mediport be placed in her chest to allow for home iv therapy. She requires 20 different medications to manage her symptoms, suffers from severe pain, and is facing further surgery. The most recent hospitalization lasted 2 weeks but she was readmitted after 48 hours at home.

She is still inpatient now.

Her doctors are working with specialists around the country leaving no stone unturned, trying to determine the reason (or reasons) for these severe symptoms which are “outside the box”.

We are praying for answers. 

As you can imagine, this chronic illness has placed a tremendous financial burden on Juliann & Will. Her copays are required upfront at every appointment, admission, and pharmacy purchase and she has missed a lot of work fighting this illness. 

I am starting this Go Fund Me on her behalf. 

Every little bit will be a blessing for Juliann & Will! 

My heart is breaking for Juliann. She is fighting hard and trying to keep a positive attitude. Thank you so very much for your prayers, messages, and financial contributions. 

With Love, 

Shawna (Friel) Sayler

Below is a conversation with Juliann with some more details about her situation and how this campaign will help her and Will. 

Can you tell me a little bit more about how your illness has progressed over time?

While I have struggled with digestive issues for over 10 years, the past three years has been especially concerning. I was originally told my pain and diarrhea was from irritable bowel syndrome [IBS] and could be treated with a better diet and less stress. I always knew something more intense was happening in my body, so I changed hospital systems and found a new doctor. The process to find an accurate diagnosis was still slow. On colonoscopy, my new physician found polyps and agreed something much more intense than IBS was occurring. Although that colonoscopy did not show macro-degenerative changes of my bowel, he believed I had an Inflammatory Bowel Disease [IBD]. He decided to complete a biopsy of my colon to test me for a rare type of colitis unable to be detected by the human eye, known as "microscopic colitis". It was a shot in the dark since almost all documented cases were in women over 50. Despite the rarity, I was positive. From there my case progressed quickly. I had an ileostomy placed in November of 2018. I have since suffered from “high-output ostomy”, which means nutrients go through my system at an alarmingly fast rate. It causes severe dehydration and the need for frequent IV infusions and over 20 medications to regulate.

It seems like the intensity of your symptoms have increased or have required more frequent hospitalizations. Is that accurate? If so, what have the last few years looked like?

In 2017 I was hospitalized inpatient five times, that increased dramatically to eleven times in 2018. As of today in 2019, I am on my fourth inpatient admission. My current length of stay is at 17 days total, with no known upcoming discharge date. While the ostomy did help in many ways, it has remained a challenge to control the amount of diarrhea I have. 

What are some of the hardships you have experienced as a result of battling this?

These diseases and disorders have drastically changed my life. Although I was able to complete my masters degree, I have been unable to consistently work since graduating. I had what I considered my dream job, but lost it due to too many sick days. Since September, I have attempted to work part time, but even those 15-20 hours a week can wreak havoc on my body. That's on the days I am even well enough to get out of bed to go to the job! A frustrating part of "chronic illness management" is that it is nearly impossible to manage! The greatest strain has been my inability to maintain consistent work. As much as I want to be employed, I am sick so often I cannot be reliable to bring home money. With medicines costing nearly $300 a month and each hospital stay costing thousands, it is impossible to survive right now. 

What impact does this have on Will and your daily lives?

I feel especially bad for Will. While he has never complained that his duties have changed, and grown exponentially since we’ve been together, I know it is stressful on him. Of course being the sole bread-winner is challenging financially, but it is compounded with the stress of not being able to take off time to be with me at the hospital. He has to make a daily decision to either help/support me or go to work to support our whole family. I am proud that he continues to work and am never angry if he misses a medical test, but it would be freeing to know he could afford a day here or there to be with me if my symptoms progress. 

What does your average hospital visit look like? (length of visit, number of tests, recovery time, etc.)

This hospital stay has been an anomaly, lasting 17 days so far. However, even shorter, average visits are disruptive. Anywhere from 3-7 days at a time I am in the hospital, then require several days at home to regain my strength. For this hospital stay, my doctors are recommending I stay off work for a month in order to fully heal. Plus to give me time to follow up with all the specialists and receive home-health.
 
Now that the doctors are doing such extensive testing, do they have a better idea of what future treatment looks like? If so, what options are they exploring?

Once I become hemodynamically stable, I will require a proctectomy. This is a surgery to remove the rectum. It will require an inpatient hospital stay, physical therapy, and home health after. The date of this surgery is unknown at this time, since I am not stable enough for that currently.

How will the funds raised help you and Will specifically? 

The funds we receive will immediately help with copays. As stated previously my medications cost $300 a month. Plus I have six different doctors I must follow up with after discharge and they will all require a hefty copay. The money will also be a buffer, so if Will determines he needs to take time off to be with me we won’t be at jeopardy of losing the house. Lastly, it will help us catch up on bills we’ve become delinquent on while managing my health. 

I know you have documented your journey so far in a few places. Where can people go to get updates and see some of your older posts? (social media profiles, blogs, etc.)

I have detailed the day to day process on my Instagram account (@chronically_juliann). But I have a much more in-depth history and account of my situation at my blog site (chronicallyjuliannblog.wordpress.com ). 

Is there anything else that you want people to know or anything else that you want to include?

Any amount of money received will be a blessing and take a lot of stress off Will and I. It is hard enough to be stressed about the actual medical conditions I have, without also fearing how we are going to pay our bills.