Rob - Hepatitis B / Liver transplant
- A 42-year old man
- Homosexual (so what?)
- Lived with HIV+ partner for 10 years
- Was single at the time of his illness, but seeing people (had been with Chris at the time for approximately 3 weeks)
- works for TD Canada Trust, but doesn't like his job very much (lots of job stress, non supportive environment)
- Had a liver transplant 17 months ago
- Had a Hepatitis B vaccine several years back, but didn't seroconvert
- Started feeling tired and run down but didn't want to take time off
- Noticed he was a bit jaundiced but ignored it
- Finally his partner convinced him to go to his family doctor
- The doctor told him to go straight to the hospital
- Discovered that he had Hepatitis B
- Had to work through the stigma associated with it
- In a matter of days things got very bad
- He became totally noncoherent and doesn't remember anything else until waking up in the ICU after getting the transplant.
- His family later told him that in that time he was put on life support and they were told he had 24hrs to live if he didn't get a new liver
- He had a FFFF status on donor lists (most urgent)
- when the liver was finally removed, it was mush - in patient's words, no living tissue left
- a nurse came to him and said something like "here are the drugs you'll be on for the rest of your life", but he was still in a Prednisone daze and didn't understand what was happening
- Went from being in good health on Sept 24 to needing a transplant Oct 2 - acute rather than chronic issue, therefore lacked a lot of the information most transplant patients have prior to receiving the actual transplant
- He hadn't been previously approached or told about his life-long medications, because it was the day after his transplant, and he wasn't even sure what had happened
- The nurse later apologized to him for the incident
- He finally started feeling better when things got worse. He thought he was rejecting, but it ended up being a constricted hepatic portal vein
- the nurses in the recovery ward were amazing. They even helped him "pretty up" to meet his partner after the transplant.
- Lives on his own in an Edwardian home, which is large. He wondered how easy it would be to manage when he first came back home
- Didn't want to rest when he first got out of hospital
- Was well-supported by friends and family - neighbours did yard work
- Went for quite some time OK
- In span of a couple of weeks, enzyme count went from 20s to 800s
- Didn't want Prednisone because of the side effects - menopausal symptoms, etc.
- Like the last time he thought he was rejecting, this was caused by the hepatic vein constricting
- Each time they tell him he is rejecting, he thinks he is going to die and gets very upset. Now, he wants the docs to be absolutely sure he is rejecting before they ring the alarm bells again
- liver biopsies are not fun
- Put on aspirin to thin blood to help deal with potential future hepatic vein constriction
- Goes to the gym 4 or 5 times a week; went for a 6 km run yesterday
- Didn't get a health insurance policy as a result of the transplant
- bloated and yellow
- finally catheterized. pee like guinness beer (lots of blood)
- family physician was upset that he didn't do Hep B testing when Rob became single
- Ambivalent about receiving the organ - feelings of guilt that someone else had to lose their life in order for him to live his, thankful, etc
- Wrote to the family
- What are the rules about transplant recipients meeting the donor family?
- What is prednisone? What are its side effects?
- What are the signs/symptoms of organ (specifically liver) rejection?
- How reliable is the Hep B vaccine?
- How is transplant priority determined and what is the rating system?
- What are the psychological sequelae of receiving a donated organ?