Save Jessika #sheneedsuslikeweneedher

**UPDATE** 10/16/2020  - From Jessika
This is going to be long since this is going to be the next crazy and probably biggest chapter of my life.
Today I have been diagnosed with small intestine failure due to progressive CIPO (chronic intestinal pseudo obstructive syndrome). With that being said, I will begin the process of getting a small intestine transplant.  I may seem crazy to you for being so happy for this, but let me explain the whats, whys, and hows.
CIPO is a rare, severe progressive disease which is the failure of the intestinal tract to propel its contents (a motility disorder). This disease mimics mechanical (physical) obstruction of the intestine. If this disease goes on without treatment or attention it leads to deterioration of life and increased mortality. This can come on sporadically (most common). It can happen for many reasons, such as neurological or muscle related.  In my case, my GI team suspects the cause is autoimmune related which affects the nerves and muscles. (It is unknown for now what specific autoimmune disease or other factors that have caused this for me, but will hopefully be discovered soon with pre testing for the transplant). This diagnosis can also be overlooked for years due to it being so uncommon. These episodes strike in healthy people typically, but the onset of CIPO is generally hidden with GI symptoms which follow the first acute episode. (For me this would have been the first “obstruction” I had back in May of 2019).
Nausea, vomiting, and weight loss are predominant symptoms when the functional derangement primarily affects the upper and middle parts of the intestine. Abdominal pain, distention, and diarrhea are associated with the middle to lower intestine. All of this leads to malabsorption which causes malnutrition and dehydration.
It’s typically treated with enteral nutrition/TPN (feeding tubes or IV nutrition) or medications. I unfortunately have failed the feeding tube due to not being able to tolerate and reach the minimum goal I need for a 24 hour period as well as still being malnourished and losing more weight.  Medication wise, I have been taking motility medicine for a few months with no improvement of symptoms or nutritional gain.  It’s gone downhill and I’ve had another partial obstruction since being back from Cleveland.
So, due to my body not responding to any of these things, the next step is a small intestine transplant.  Seems scary, trust me I’m scared as heck. But there are so many positives to getting a new gut.  I’ll have the opportunity to eat food again, not die within the next few years, return to doing the things I love, pursue the goals I have, and overall live a normal life again. Also, since I’m young, the success of the transplant is extremely high. Also, Cleveland Clinic is the #1 hospital for small intestine transplant and success.
With that all being said, early next week I will begin my process with my transplant team which will include numerous testing, consults, and even moving up to Cleveland for a few months when it gets closer to surgery time and recovery. Once I am done with my testing and consults, I will then have to be approved by the transplant board and my insurance to be put on the National Organ Transplant list. Once I’m on the list it will be a waiting game for when the right match will happen, which can take hours up to months or even years.  More than likely it will not be that long once I’m on the list due to how rare this transplant is, how young I am, and also the fact I don’t have a lot of underlying conditions that could disqualify me for being at a higher spot on the list.  But with that I will also have to live close to Cleveland Clinic since it could be at any given moment and it’s super time sensitive.
After I get my new gut I’ll have to be in ICU for a while and monitored closely for a few months to ensure I don’t have any rejection issues. Once I’m discharged I’ll remain up in Cleveland for a few months for monitoring. I’ll have to be on immunosuppressants for the rest of my life which is okay with me and a very fair trade for where I’m at now and heading.
There’s a long road ahead and I’m going to tackle it and try my absolute best to remind myself to not give up. I hope this explains it enough, and I will of course update as I go through this journey.  Again, thank you everyone for your support, thoughts, prayer and well wishes.  And those who have reached out through my mom’s gofund me to help us, I can’t ever thank you or repay you for your immense generosity and compassion.
And to my future organ donor, I appreciate you more than life for the generous decision you made. Thank you for allowing a part of you help give me my future life.
Thank you everyone again.
With love,
Jessika


10/14/20 20 - The last few weeks I have meant to start a GoFundMe for my daughter and every time my eyes would swell up with tears at the reality of one of my biggest fears.  To hear her say “Mom, what if I have cancer” and as I look into her big blue eyes to reassure her “I refuse to think that and it’s not going to be.” My baby, she is not a little girl, but she will always be my beautiful daughter, my first born, and my rainbow baby. She is Jessika, my 21-year-old, and she needs your prayers for healing and for doctors to figure out what is wrong.  Have I told you yet how much I love her?  These funds will help her pay for her tube feeding and infusion supplies, pay off the hospital that is suing her, pay for accumulating debt at another local hospital, her past and future tests to be done at the Cleveland Clinic as well as for the specialist, a place to stay when she has to be in Cleveland, and for help in getting her there and back home. Funds will also help alleviate the additional stress of missed works days due to this unknown illness.

In the last few weeks Jessika’s life and health has completely changed. On most days she is a positive, courageous, and the one who sacrifices her time to save the lives of others.  Yesterday was hard for her and she was “down.” She said I might as well already be “deceased.” The stress of being told you have to pay this, you have to pay that, the insurance you have will not pay for this, but it will pay that. Last month the hospital from her first hospital stay in 2019 sued her for a $4700 bill that they themselves refused to work out a payment plan for anything less than $600 a month. Most two income families can’t afford a payment like that!

Although she has already exceeded her individual deductible for the year the insurance company is telling a medical supply company she has not. This company is supposed to provide her with all the necessary equipment, bags, tubing, and tube feeding solution for her feeding tube.  The representative was kind and shared “I don’t like some of the insurance companies and I dislike telling families that if they can’t afford the supplies up front then they will not be able to ship it to them.  My reply, “so with families who can’t afford this that means their loved one is left to starve? They will die.”  Jessika’s feeding supplies are going to cost her $173.33 every month. As her mom, I will not let my adult child “starve.”

This past Monday Jessika found out her infusion fluids are not covered by her insurance. Cost is $50 every week for fluids only. With her medical expenses adding up she sent her doctor a message to see if there is another place that might cover this therapy.  The company supplying the fluids then called Jessika back to inform her that her doctor “donated” $500. Jessika cried. This will provide her with much needed fluids and electrolytes for the next ten weeks.  Thank you, JESUS and thank you to her precious doctor!

Below I have shared information about this amazing young woman and a timeline of events that have taken place leading up to now. I want her to be courageous and brave, but she is entitled to have moments of weakness and tears just like anyone else. She has had numerous IV needle sticks to give her fluids, several hospitalizations, and most recently been to the Cleveland Clinic to see a specialist and for testing, plus placement of an NJ tube for feedings.  She will need to travel to Cleveland again for more testing. 

Her weight loss, lack of nutrition, and lack of hydration has required placement of a Portacath for her to receive infusions of fluids and electrolytes. While at the Cleveland clinic they would not use her Portacath to give her fluids for her tests. It was “too new” and they did not have the information for what type of port they would be accessing.  

Who She Is:

Jessika has been independent since before she was 18.  She is a Fire Fighter/Emergency Medical Technician (FF/EMT).  She applied to Beaver Lake Fire Department (BLFD) as an EMT on 8/15/2017.  She then began her training as a Fire Fighter and on 7/18/2019 she graduated from fire academy and was chosen as one of two Class Captains. In that class she was one of three female recruits to become certified as a FF. Her ambition in a male dominated career has been incredible.  She is not afraid to be at the front-line saving lives. She wants to do so much more so she began nursing school this fall and now works full-time in an Urgent Care, part time for BLFD, and PRN for EMS at a local hospital.  She worries that she will lose her job although I reassure her this will not happen.   She is also an individual who would rather give than receive. 

Here’s the timeline for her story:

*There have been other ER & hospital admissions that I have not been able to include below.  The timeline below are just highlights.

May 19, 2019 - What she thought was pain, nausea and vomiting because of an ovarian cyst turned out to be a small bowel obstruction.  Her doctor was concerned considering her age and no prior history of abdominal surgery. They did a CT scan, a small bowel series, gave IV fluids, did pain control, corrected low potassium levels, and even discussed the possibility of surgery. Fortunately, she slowly improved and after a few days was discharged. 

Sep 12, 2019 – No more roommates or living at the fire department. Jessika moves into a safe place all to herself.  Has continued to have intermittent abdominal pain, nausea, vomiting, and only has liquid stools.

Dec. 2019 – Gall Bladder removed.  Blood sugars begin to run low in the 50s.

*Hospital from first admission will not work out a payment plan for the care she received. They want her to pay $600 minimum a month. After explaining that she cannot afford that kind of payment and offered to pay $75 monthly, the person she spoke continued to demand $600 monthly and refused to work with her on a payment plan.

June 20, 2020 – Back in the hospital, a different one, for another small bowel obstruction and an NG tube finally placed after ten attempts. Blood sugars running in the 40s. Continues to have nausea, vomiting, and diarrhea (N/V/D) post discharge.  She feels alone because no one can visit her due to COVID restrictions.

Aug 2020 – Seeing a new PCP who is determined to help.  Has diagnosed her with Exocrine Pancreatic Insufficiency and has started her on Creon to help her body absorb nutrients from when she eats.  Jessika is noticeably losing weight.

Aug 15, 2020 – Hospitalization for a small bowel obstruction, again, with fever. Doctor also concerned about her pancreas. Increased difficulty with keeping IV access due to dehydration. Had 3 IVs blow so they started one in her bicep. Doctor, the same one from her first admission, and radiologist are reviewing all her CTs to see if there is any correlation with where they are happening. IV fluids are starting to perk her up. No answers as to why this keeps happening. Was told “if the pain comes back just come back to the ER.”

Aug 24, 2020 – Jessika starts nursing school.

Sep 2020 – PCP referred to Cleveland Clinic in Ohio. Tele consult done on a Saturday with Jessika and her PCP.  Now we have a plan.  Doctor wants a port placed so Jessika can receive infusion therapy and receive electrolytes and TPN if necessary.

Sep 15, 2020 – My mother, Jessika’s grandmother, passes away at 3:02 PM. Earlier that day Jessika was sitting with me.  This is when Jessika asked me “Mom, what if I have cancer?”

Sep 22, 2020 – Surgery for portacath insertion. She is still being courageous and positive.

Sep 27, 2020 – Flight to Cleveland Clinic in Ohio. The Ronald McDonald House is closed down this week because of the Presidential debate. Car rental and staying in an Air BNB for five nights is far cheaper than staying in any of the hotels near the clinic.

Sep 28, 2020 – Tests #1: Jessika is given “radioactive” eggs and toast for her gastric emptying test. Everything moved through her stomach and intestines much faster than would have liked.  Test #2: CT enterography. They would not access her portacath without having more specifics about her device so started an IV instead.

Sep 29, 2020 – Bowel prep for the next day. No 21-year-old should have to do this.

Sep 30, 2020 – Jessika is given general anesthesia to have an endoscopy, a colonoscopy, and an NJ tube placed. This is the first time she has cried throughout this experience. She was counting on her port being used, but they started an IV instead. Because of how dehydrated she is how frail her veins are now they had to stick her on her mid inner wrist. This is when this courageous girl had her first emotional breakdown. 
Later that evening Jessika made post on Facebook and shared the good news that nothing abnormal was visibly seen with her scope procedures but several biopsies were taken from her intestine and stomach. Her NJ tube is temporary and if it does its job and she is able to absorb nutrients with it then she will eventually get a J tube surgically placed. If she isn’t able to absorb nutrients, then they will have to dig deeper into her small intestine to see what is going on inside of it. Her CT came back clean.

Oct 1, 2020 – Jessika returned to the clinic for a nutritionist consult appt. A scheduling mistake prevented this from happening so a virtual visit with the nutritionist is in the works for after she flies home the next day. The person she did meet was another GI specialist who happens to be in charge of the nutritional program. He is not her doctor, but he and his nurse took the time to explain that it is narrowed down to an issue with her small intestine and that he feels it is a motility issue resulting in parts of her small bowel not working like it should. Still no why or where or what the cause is yet. The plan has been to do a capsule endoscopy and or a motility capsule study since these details are not seen on a CT. Why this was not done too while she was there is unclear. Her pancreas is on deck for a full work up as well.

Oct 2, 2020 – Jessika finds out her biopsies are back. Her stomach shows mild reactive gastropathy (no h.pylori). Duodenum: clean. Right Colon: clean. Left Colon: small spec of colitis noted due to bowel prep. No IBS, Crohns, Celiac Disease or cancer in the esophagus, stomach, or large colon.  

Oct 8, 2020 – ER visit for vomiting, heart rate above 140, and abdominal pain. This time a partial bowel obstruction.  3 Liters of fluid given through her port to get her hydrated.

On October 16, 2020, Jessika is to have a tele visit with her GI specialist. She has called, sent a message through the portal, and left a message for a return call.  Because they have not reached back out to her, Jessika scheduled a tele visit appointment for this Friday.  She has not received any communication, follow-up, a plan, or a timeframe for what needs to happen next. Jessika is also going to discuss her concerns about his lack of communication, etc.  As a medical professional myself, it is crucial that providers follow through with patient care and not let them fall through the cracks.  It is also imperative for a specialist to communicate with the referring physician and this also has not happened.  She is to advocate for herself at this appointment. I will update as soon as we learn more. 

Thank you for your time in reading her story.

Love,

Rebecca Stewart (Jessika’s mom)