“This is the eight blog in the Caregiver Series and discusses the waiting list”
It has been over a year since I have blogged for the Caregiver Series and this blog is about the next stage in the process. Last time that I blogged, my husband was undergoing testing to go on the waiting list for a lung transplant. He started organ testing in April 2022 for Pulmonary Fibrosis.
For every 6-8 weeks, we went to the organ hospital for testing to see the progression of the scarring in the lungs. Each time we would go, he was still too healthy to be placed on the waiting list. While that seems like good news, it means that you are not ready to be placed on the waiting list. The Pulmonary Fibrosis scarring has to be progressively worse for you to qualify to be placed on the waiting list.
This testing continued from April 2022 through May 2023. On the visit in June 2023, the testing showed that the scarring had increased enough to be placed on the waiting list. While that day was extremely exciting that he was a step closer to getting a lung transplant, the waiting officially started.
On that day in early June, he was placed on the list and the estimated wait time was 3-4 months. Little did we know that that time would pass without getting a phone call.
What happens when you wait-
- Pack your hospital suitcase
- You are instructed to pack a suitcase which is mainly for the caregiver. However, you are packing for a different season and not knowing when you will be called. At first you have the suitcase packed and the slowly you start to take things out of it.
- Answering you phone
- Most of us ignore spam calls on our cell phones. While on the waiting list, you have to answer all calls on your cellphone, which is a little frustrating because you don’t know where the call would be coming from.
- Travel
- While you are on the waiting list, travel is halted due to the logistics when you receive the call. You have 4-6 hours to get to the hospital from the point that you are notified. Also, if you are out of town and you catch some sickness, you would have to pass on the organ that becomes available.
- Unknown
- The aspect of the unknown is that planning anything becomes difficult as you just don’t know when the call will be coming. Every event has a ‘what – if’ attached to it.
Developing Patience-
As of this writing, the waiting time is in the 8th month. As time goes by, you have to focus on areas that develop your patience further.
- Take one day at a time.
- Keep yourselves busy.
- Take care of your health as the patient.
- Take care of your health as the caregiver.
- Don’t look backward as the time you waited.
- Look forward to the hope of the new year.
- Eliminate drama and stress.
We are all waiting for something, patience is a must!!
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