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Fight Liver & Kidney Disease with Scott.

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Hi, my name is Emily Higgins Shelley (Scott’s Sister-In-Law).  I created this page to help Scott raise funds for his major medical bills, medicine, travel, hotel, food, and other miscellaneous expenses that he has been incurring since January 8th.

I'm going to try to give a quick(ish) timeline over the past several months...

Late August of last year, Scott started having symptoms of feeling "off."  His hands were shaking, his body would fluctuate between feeling hot and cold, and his hands and arms would go numb.  He went to the doctors at that time - they did blood work, and just said to make sure he was drinking enough water and juices to stay hydrated.  I think that was probably when this all started.

In October of last year, he became jaundiced and was having abdominal pain.  They did a ton of testing:  blood work, as X z, CT scan, X-rays, etc.

At that time, there were really no answers, other than fatty liver disease.  At the end of December, we all had the flu.  Scott was placed on Tamiflu, but ended up going back to the doctors in January because he didn't feel better.

They did blood work and sent him directly to the ER. His liver function as well as his kidney function was all significantly off.  He was admitted for more testing and IV fluids. During his (more than two-week long) admission in January, the ER doctor discovered he had developed “C. Diff. Colitis” — a *nasty* bowel infection that causes severe diarrhea and is highly contagious and difficult to kill.  The blood work also indicated that he had a case of Pneumonia.

After being admitted and isolated from others, he experienced hallucinations one night — his ammonia level was highly elevated (unfortunately, this can happen with liver failure), so they had to put him on a medicine called Lactulose which *causes* diarrhea.  I'm sure that was fun!

During that stay, they had to start Dialysis because he went into kidney failure.  To do that, they placed a port in his upper right chest.

The doctors mentioned at that time, he would most likely need a liver transplant as well as a kidney.  He was discharged home near the end of January.  He was having issues with his Dialysis’s port leaking a clear/yellow tinted fluid.  At Dialysis, the staff were needing to change his dressing per each visit. By that evening, the fluid would leak out again and he would have to clean and re-bandage the Dialysis Catheter.

Roughly 10 days after he was discharged, he had to go back to the hospital — he was dizzy, his blood pressure was 68/48 and his Hemoglobin was 6.3.  He was admitted that time for about another ten days.  He received multiple blood transfusions.

They did a colonoscopy and found that he had bleeding hemorrhoids, which was why his blood count was dropping.  Then about another 10 days later, he had to go back to the hospital again because of his low blood count — 7.2 at that time.  Thankfully, they did not have to admit him to the hospital.  They kept him in the ER and gave him another blood transfusion.

A couple days later, he noticed that his abdominal area was swollen and painful.  He showed the Dialysis Center Nurses his new issue - they said he had to return to the hospital for a “Paracentesis.”

A Paracentesis is where they drain fluid from the abdominal area.  He had it done last Monday and is already starting to swell up again.  His stomach gets so large, he looks like he is pregnant. They are drawing an average 5-6 liters of fluid, which is about 12-13.2 pounds.

Despite the fluid in his abdomen and the swelling in his legs and feet, he has lost a significant amount of weight — mostly noticeable in his face.

He was scheduled to meet with the UPMC Pittsburgh Transplant Team in March, but that kept getting pushed back.  He and his Mother (Kathy) finally got appointments on Tuesday (4/4/2023) and stayed there until Friday (4/7/2023).

During that time frame, they performed more testing (heart and lungs).  He met with the Psychologist, Finance/Insurance, Physical Therapist, 
Nutritionist, Liver and Kidney Surgeons, and Behavioral Health Specialist.

The team was able to come up with a plan regarding whether he needs a full cadaver liver and/or a partial living donor's liver.  They also discussed whether he  will get both the liver and kidney at the same time or if it will be just the liver first and then the kidney later (since he is on dialysis).

He will eventually need an AV fistula for long term dialysis and they have discussed vein mapping for the AV Fistula which was done on Monday, April 10th.  Once he gets his transplant, he will be in the ICU for 2-7 days.  He will then be moved to a regular hospital room for about 1 week then sent back to the hotel (Family House) for 4-6 weeks.  He needs to remain close to the hospital for Physical Therapy, Doctors Appointments and Dialysis.

Scott needs to have a Caregiver present during his entire stay. His parents (Jim and Kathy) are going to alternate weeks staying out there with him.

 Throughout all of this, he had originally taken 12 weeks of FMLA through work.  However, once he gets his transplant, he needs to be very cautious of infections.  With working at Rutter's gas station, he is constantly around the general public, which his doctors all said he can no longer do as he will remain immune compromised for over a year.

He has since applied for Unemployment Compensation and Disability Benefits. He hasn’t received any response from either the State nor Federal agencies. So money has been very scarce for Scott.

Please keep Scott and his Family in your thoughts and prayers…

Any monetary donations you can make towards his expenses would be greatly appreciated!  He is looking to raise at least $42k to cover all of his expenses throughout his transplant(s) and several months after returning home.

To make a monetary donation — simply click on the “Donate” button at the top or bottom of this page.
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Donations 

  • Anonymous
    • $170 (Offline)
    • 1 yr
  • Anonymous
    • $1,000 (Offline)
    • 1 yr
  • Kathy L.
    • $100 (Offline)
    • 1 yr
  • Anonymous
    • $100 
    • 1 yr
  • Judy B.
    • $70 (Offline)
    • 1 yr
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Fundraising team: Scott’s Medical Fundraising Team (2)

Scott Shelley
Organiser
Millerstown, PA
Emily Shelley
Team member

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