Last February a very good friend of mine went to Pittsburgh from Texas to support her brother during his surgery. While she was there she met a couple staying at the Family House. She was struck by their patience and faith as they wait for the perfect lungs for John. John is not even 60 years old and needs a double lung transplant. His wife, Helen had to return to Missouri to work since he is on her insurance plan. Dan and Eric are their sons who are also involved in taking care of John.
Yesterday my friend asked for prayers for John and Helen, that people be aware of the importance of saying yes! to organ donation. She shared this update from Helen:
“Well, this week John begins his 12th week at the Hospital.He is STILL waiting for his lung transplant. We know it will happen, I have to be patient.John has had three no-go’s. The first set of lungs had pneumonia and the second and third were too big. John needs size small (not average) lungs, type 0, and there has to be matches.I was with John for eight weeks, and with the approval of the floor nurse practitioners, I went back home and back to work because I will return for at least a month when John gets his lungs. I will be with him until he is able to go to the Family House. I will get him set up and Dan will take care of John this summer. Eric is currently in Pittsburgh with John. This has helped John’s spirit.”
I know from experience how hard it is to be a caregiver and wait, wait and pray for organs to become available. You feel so guilty knowing someone has to die for your loved one to live. As I have written before, a wise transplant professional told me, “you are not praying for someone to die. You are praying that when someone dies who can donate organs, that his/her family will say yes to organ donation.”
I continually pray for those on the transplant waiting list. But this morning, because my friend asked, I am praying specifically for John, Helen, Dan and Eric. I pray that their faith and hope remain strong. I pray they are comforted in the arms of the Lord. I pray for the skills of the doctors and nurses helping them. I pray that families who experience tragic deaths of their loved ones say yes to organ donation when they are asked. I pray for comfort for their grief. I pray for the empathy and skill of the transplant coordinator who is the one to talk with the family about organ donation. I pray that people will become aware of the need for organ donation and they will register their intent, and most importantly they will share that end-of-life decision with their families and friends. I pray for the skill of the transplant surgeons when lungs become available.
Will you join me in this prayer?
I don’t know very much about lung transplant. I have personally met three people who have received lung transplants and it is miraculous how their health is turned around!
Whenever I am aware of a specific person waiting for an organ at a particular transplant center, I look up data about that on HRSA’s Organ Procurement & Transplantation Network site. Nationally, there are 1,647 people waiting for lungs right now and 52 waiting for heart and lung transplant. “According to the United Network for Organ Sharing (UNOS) the patient survival rates for all patients that had a lung transplant are 85% at one month, 69% at one year, and 51% at three years for patients transplanted.” The average waiting time overall is 18 months.
Below is the current waiting data for lungs by hospital in Pennsylvania. Every one of those numbers is a PERSON with a FAMILY who are waiting, waiting, waiting. Can you imagine how hard it is to wonder each day whether or not you are going to make it? Praying for someone to say YES to organ donation? How hard it is to watch your loved one struggle, to get more and more sick with so very little you can do about it?
This month, October 2012, John received new lungs! Just wanted to ask all of you join me in prayers of thanksgiving. Praise God! Let’s pray for healing and a new normal life for John and his family.
You’re right in that we can’t fully answer this qutesion, especially if her Dr’s don’t yet know exactly what the cause of this problem is. If as you say they have ruled out cancer, it might be something contracted from the environment, e.g. exposure to certain dusts from coal (unlikely), bird droppings, asbestos etc, or similar.In terms of living with one lung, yes it is going to lead to real compromise in quality of life in terms of stamina and being able to perform as a healthy person. Even if removal of the affected lung, to prevent spread to the functioning one is possible, having just one lung presents problems. The ability to fight of chest infections is going to be harder and avoiding them is going to be very important. Avoiding over exertion will also be important, you know yourself how something as simple as running up the stairs can sometimes make you catch your breath, you have 2 lungs to catch it, she will only have 1. My suspicion is that it may lead to an earlier death but how much earlier will depend on whether this lung is already affected to any degree or is likely to develop the same problem and if there are other factors already in play such as smoking as clearly that needs to stop immediately but won’t guarantee against future problems. Regarding transplant, that really depends on the cause of the problem and her fitness for such a procedure and the level of risk such an operation in itself would present. If they were going to consider it, they would have to look at her heart function as well as the single lung. However, I also suspect that if this lung is functioning well and is not at risk of developing same problem then they will leave well alone, and indeed even if it is at risk in the future, if it is doing ok now they are likely to leave it to give her time to recover from the current problem and have some plans discussed and ready for a later date.I think you realise that your mum is facing a significant threat to her ongoing health and there may be a rocky road to travel for all of you. Certainly her life is going to be permanently changed but that doesn’t mean she can’t continue make a life from that change. Many people have successfully adapted to living life with one lung, it might be slower, they walk for the bus & wait for the next one if they miss the first, but it is still a life that can be fulfilling.I hope very much, that you & your mum, get the best news possible but even if it’s not great, she has you for support and Im sure as a family you will rally round and do the best you can and that in itself is special and will give her a great deal of comfort & strength to do whatever and face whatever comes her way.Good luck.