We were blessed to have retired just in time to be available when our 29-year old son, Ian, became seriously ill at the end of 2016.
Ian was hospitalized 10/28/16 and again 12/13/16 when his lung collapsed. He was diagnosed with Hepato-Pulmonary Syndrome (HPS) and Idiopathic Pulmonary Fibrosis.
Even though his lungs and liver were showing only mild scarring, the HPS caused the blood to move through the lungs too fast to get oxygenated so multiple organ transplant was the only remedy.
He became so sick, so fast, that he had double lung and liver transplant on 2/28/17, just four months after the diagnosis! The only symptoms that he had beforehand were some shortness of breath and a dry cough. He thought he was just out of shape and needed more cardio! It is pretty rare to get listed for transplant and get organ donation that quickly –it was a whirlwind!
Ian was transported from one ICU to another: Orange Coast Memorial to Keck Medicine-
USC and finally to Ronald Reagan UCLA Medical Center where they had the willingness to take on the risk for his serious case and the experience in multiple-organ transplantation. Of the five hospitals he was referred to, UCLA was the only one that agreed to take him and then, only after the private insurance had kicked in. Don’t get me started on how he would have died due to lack of insurance or only having medicaid or if the timing were different! He learned he was ill during open enrollment and got private insurance for 2017 thank GOD!
We received an accelerated education in affordable healthcare, Social Security Disability, Medicaid, hospital protocols, ICU processes, organ donation and transplantation and special bonus credits in patience, power of prayer, relationships and the plight of families in medical crisis situations. Advice: if you don’t have good insurance (and even if you do), go to the best hospital in the state FIRST. Hospital transfers can be refused for financial or risk reasons!
Holidays were different this year!
Despite being super stressful and exhausting, there were some nice little adventures woven in!
We stayed at UCLA campus hotel, called The Guest House and UCLA medical housing, Tiverton House but we needed accommodations for Ian to be near the hospital after his release, which kept getting pushed off. He went to Little Company of Mary rehabilitation center in San Pedro for a week and we planned to stay near there at Long Beach but our timing no longer matched up to his move there. Rather than driving back and forth to UCLA from Long Beach, so we took a few days off while family stayed with Ian at UCLA.
We spent a week and a half on an Air BnB boat in Long Beach marina and went on a sunset cruise with Captain Chuck during our stay – a great respite after long days/weeks at the hospital. Rainbow Marina has lots of restaurants and great people watching from below the hub-bub on the marina docks. It was really nice.
When Ian was released from the medical Rehab center in San Pedro, we moved into an Air BnB house in Santa Monica near the hospital.
We saw a bit of Southern California during our stay. A lunch at Santa Monica beach in April and first time actually at the beach since arriving in late November. A drive to the marina here and there. We enjoyed a visit to a cool place, LaBrea Tarpits.