I had never heard of IPF until I was diagnosed in 2003. The first thing I did was look it up online. What a scary and depressing future the Internet told me I was facing—3 to 5 years to live. I was 61 and working in Information Technology and maybe would not live to retire! I would not live to see my grandchildren. At the same time, my husband was diagnosed with lymphoma. He passed away in 2005.
After crying for more than a few days and feeling very sorry for myself for quite a while, I began to look for a support group. There were none at all in New Jersey, so in 2004, I decided to start one.
It was difficult at the beginning. My husband, daughter and son-in-law helped to get the group started. We left flyers in pulmonologist's offices, but that did not work. I believe patients were reluctant to admit to others they had this disease, perhaps because of privacy issues. We also put notices in newspapers to advertise the first few meetings. We contacted the Pulmonary Fibrosis Foundation and added our information to their list of support groups. Finally, patients and their caregivers began to come to meetings. There was a core group of charter members who came to meetings every month. Gradually, the group grew and we named it the Garden State Pulmonary Fibrosis Support Group (GSPFSG). This group has been a source of strength and support for me for 14 years.
The group always has new members joining. We also have members who, like me, have had lung transplants. These members have received their new lungs at various hospitals and are happy to share their experiences.
Let me give you some information on lung transplantation. At present, lungs can only come from a deceased donor and they have a brief lifespan once removed, so things have to move quickly. There are 2 types of recipients: Primary (first to receive the donor lungs and usually require a double lung transplant) and Back-up (second in line and can receive either a single or a double). Of course, both recipients must be a match for the lungs.
I joined the Columbia-Presbyterian Lung Transplant Program in 2008. It was there that my diagnosis was changed to PF caused by Scleroderma (not idiopathic). This was 5 years after the initial diagnosis. I was listed for a transplant on May 31, 2012, 9 years after diagnosis. I received a call in June, but went home with no transplant because the primary recipient received the lungs. That is often called a "dry run" since there is no operation, but it does help familiarize you with the process.
My second call was on August 1, 2012, and this was it. I was the Back-up recipient again, but since one of the lungs was not acceptable, I received the healthy lung as a single. I was transplanted at Columbia-Presbyterian Medical Center on that day and Dr. David Davidio performed the surgery. One month after transplant, I turned 71. I am now 5 and 1/2 years out and still doing very well.
I was in the hospital for 9 days post-transplant. My stay at the hospital and the care I received there was outstanding. The doctors, nurses and physical therapists were all very caring and helped me recuperate quickly. It was a very good experience. My recovery went well due to the wonderful care I received from a friend who was my caregiver and my overall physical fitness. I had stayed active pre-transplant by attending pulmonary rehabilitation and going to the gym. These 2 things were instrumental in my successful recovery. I strongly recommend physical exercise pre- and post-transplant. Do not become a couch potato. Stay as active as you can!
For a newly diagnosed person with IPF, it is important to find and communicate with others who have the disease. Outcomes are not as dire as predicted and hearing what others have experienced and are doing to manage the disease can be enlightening and hopeful. A PF support group within travel distance, or an online group if none is available, is one of the best sources for information.
After being diagnosed, a patient might want to know what physicians other IPF patients have selected for their medical care. A support group can provide varied information on this topic. A physician experienced in PF will be able to provide the best care and recommendations for treatment.
Support group members who have had lung transplants can also provide new patients with invaluable information regarding pre- and post-transplant requirements. In addition, they can speak to the need to become part of a lung transplant program in hospitals that have these programs.
Throughout this experience, one of the most important things I've learned is that you have to be your own advocate. Find out all the information you can about the disease. There are now drugs available that can slow the progression of the scarring—investigate them. The best source for information is your physician and others who are dealing with it on a daily basis.
So, getting back to what I said at the very beginning—I did live to retire (11 years now). I did live to see my 4 grandchildren (now ages 6 to 12)! Our goal now is a CURE! Support research into IPF and PF. This goal may take a while, but it is so worthwhile that we must vigorously pursue it. Imagine a world without pulmonary fibrosis. With your help and support we can make that happen.