Duke Transplant Friends

Well, it was Friday again and I was excited again. As I told the group, I don’t know if it was because my niece was coming from Illinois to stay with me or if it was because I would be with the group. I guess that gives you some idea of how pleased I am to be a part of the Lung Transplant Patient Care Giver Support group!

We had another really good meeting with lots of exchanges of information.

I heard some really good feedback about Healthview.org. Everyone is excitedly looking forward to labs results being released through that medium. For those of you who may not know: healthview.dukehealth.org is a Duke Website where a patient can check on all of their upcoming appointments. The new information that is being added will be the patients lab results, which means a patient (or their care giver) will be able to view lab results which I understand will include pulmonary test results as well as blood gases. Now....lets all remember this is NEW so let’s be patient as they work out the kinks.

One of the Caregiver’s shared his experience with a new insulin pen. He advised that it is wonderful and very easy to work with. This is not meant as an endorsement but only new information that you may want to ask your doctor about. The word “EASY” is what got my attention.

Those that are about ready to go home are excited but also skeptical, as they doubt their own ability to care for their loved one that far away from Duke. They will be fine, as I said this group is very “savy” and very capable. We talked about the need to have their pharmacy “on board” with what the needs will be. I cautioned them to remember to talk with the pharmacist in advance as all the specialized drugs, which one might require, may not be available at a moments request. So talk to the pharmacist in advance and let him know of your patient’s special circumstance. And remember, just by the fact alone that he/she is a lung transplant recipient makes them special!

We also talked about how blood tests would be handled away from Duke. The process, apparently remains unchanged for the last several years. You locate a local lab that can draw the blood and then they fax the results to Duke, so your docs are always “on top” of what’s going on.

We went on to share concerns about exercising once they were away from the CFL. I shared how Jack and I joined the Y and exercised together each day. That was good for both of us, not only for the physical side of it but the sharing of the time and the sharing of the satisfaction of each of us reaching our own personal goals. I feel that shared time brought us closer as a couple. Concerns were raised about using “community” equipment. I think we all agreed that each of us has to take responsibility for wiping down the machines before we start and not ASSUME that the last person wiped it down when he/she was finished. Both the patient and the care giver must be constantly pro active in looking after their own best interests.

Last but not least, on the topic of sanitization ....one of the group shared that Super Walmart sells the waterless soap in small bottles with chains, so that you can hang the miniature bottle around your neck. How great would that be for the gym???