Lung Transplant, Waiting for the call
Part Four of a series submitted by Anne Tiller
We finally received the official “go” as active on the transplant list! All the tests and work we have done have brought us here.
We weren’t expecting the call from the coordinator as soon as it came announcing that we were listed as active and to give us the infamous number.
Even though we knew it was coming, it was still a bit of a shock. A cold wave washed over me. Part relief and part terror. We were happy and excited to be at the next stage, but we were also terrified.
The first thing I did was program a special ring into both of our phones and make sure our coordinator was on the favorites list. That way no matter what time it is, even if your phone is off, it will ring.
The next thing we did was pack a bag for each of us; one for my husband and one for me. Keep in mind that a double lung transplant operation is a long one, usually between 6 and 12 hours, and you have to be there the entire time. The items I packed are listed at the end of the article.
My husband was getting stronger physically, but his lungs did not seem to have improved. I worried about leaving him at home alone, and he assured me that he would be fine. I filled his portable oxygen tank just before I left for work. I have heard from others that the decrease in ability to breathe can occur quickly. Luckily, we have a support system in place. We had someone to take him to rehab when I couldn’t be there and his father checked on him a couple times a day. But, I still worried.
I am lucky enough to be a substitute teacher, which provides me a flexible schedule and allows me to go to appointments and rehab. It is important that the caregiver know exactly what is going on. This is a life-changing event. You have to be the ears and sometimes the memory; things can get lost in the re-telling.
You are closest to your loved one. You will know when something is wrong or simply “not right.” You are in the best position to advocate for them. Ask questions. Demand answers and/or treatment. You can do this without making a scene; persistence is much more effective.
One suggestion I have received is to tour the areas of the hospital where you will be waiting. It will help relieve some of the anxiety and give you a better idea of what you need. I will be visiting the family waiting room on our next visit while they are yelling at Mike during his PFT.
Before the actual double lung transplant, we were in a holding pattern, which wasn’t bad. We kept busy with rehab, doctors’ visits and life in general. But, we were ready and prepared to roll when the call came.
Here is a list of items I packed for each of us to take to the hospital when the call came announcing new lungs were available. I know may sound like a lot, but my bag is just an average size shoulder bag that I use to carry my laptop in addition to my purse.
- One day’s worth of medication – the hospital will take over from there.
- Change of clothes
- Book to read
- Cough drops
- Glasses and case, if necessary
- A few days worth of my medications
- A change of clothes
- Toothbrushes (I packed several disposable ones.)
- Wash cloth in a Ziploc bag
- Travel size soap
- Hand towel
- Hand sanitizer
- Hair brush
- Wet Ones
- Book and Crosswords
- Phone and iPad chargers
- Cash (some change for machines)
- Writing pad/book & pens
- Snacks and something to drink (Most waiting rooms have snacks, coffee, tea, and sometimes juice for those waiting. Bring something just in case).
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register