We just returned from the SCCA’s Long Term Follow-Up Class for transplant patients. The class is a requirement before a patient can be discharged, and we have only more day of appointments to keep here, concluding with tomorrow afternoon’s Exit Conference. We plan to drive back to Hood River on Friday, one day early! John will share his thoughts and emotions surrounding this milestone in his own post.
At the LTFU Class the SCCA provided a letter to family and friends to help explain the patient’s recovery process. I will share that information here:
It will take at least 12 months for John’s immune system to recover. He will be at a higher risk for infection and need to pick activities that minimize that risk. He can go out to eat or to the gym, etc., but should do so at times that will avoid crowds.
Hand-washing etiquette is the most effective way to prevent infection. In our environment in Seattle, everyone is tuned in to this important practice. We wash our hands frequently, and will ask friends and family to do the same when in our company.
John will also need to avoid contact with anyone who has symptoms of any kind of infection; we ask that you not visit if you have a cold, etc. He must refrain from hugging and/or even shaking hands at this point, whether or not you are symptomatic. Also, if you come to visit, please do not bring pets.
John needs to follow a diet for immune suppressed patients for the next 3 months. It’s not horribly restrictive, but he must avoid: deli meats & cheeses; soft cheeses like feta, Roquefort, etc; raw or undercooked meat, fish, eggs; fresh fruit salsa; any non-pasteurized items; unwashed fruits and vegetables; sprouts; raw grains; fresh salad dressings with raw eggs or cheeses; raw honey; brewer’s yeast. Needless to say, he will avoid salad bars and steam tables.
Transplant patients often experience extreme fatigue that is exacerbated by insomnia. It is probably the most frustrating long-term side effect and takes many months to resolve. Exercise helps with fatigue, and a short visit that includes a walk would be one of the nicest things you could do for John.
We deeply appreciate all the wonderful messages of support we’ve received. Please know that they do make a difference in our spirits from day to day and are very sustaining. We look forward to seeing many of you back in “the Hood”.
Marilyn
Good Blood, Bad Blood 