Our Story: Getting into the Program

Columbia-signOnce we settled on Columbia as our transplant center, the Director of our adult CF Clinic submitted a referral to Columbia on our behalf. In approximately two weeks, we received a phone call telling us that we were assigned a transplant pulmonologist. We were also given our first appointment date.

At our initial appointment, we learned about transplant in general, but also were told about Columbia’s specific requirements. We discussed compliance with transplant protocols and had a thorough discussion of all aspects of lung transplantation. Our new doctor willingly and patiently answered the many, many questions we had – including a comparison of Columbia with other centers.

This discussion was facilitated by the research we had done prior to the appointment.  A rigorous and, in our case, speedy online study of basic lung transplant information was helpful to hone our line of questions for the doctor.  We had a general knowledge of the lung allocation score, the testing required, the steps to be accepted into the program, the surgery itself, the demanding appointment schedule following surgery and a very general idea of the recovery process.  We had a deficit on details, though.  And we wanted to know what, if any, of the general knowledge we had gained applied specifically to Columbia’s program.

Probably the most salient aspect of our appointment was learning that we would need to get to the Center in a hurry once lungs were made available and that we would need to live close by the Center for three months after the surgery to accommodate weekly appointments. We found an ideal situation at a hotel north of NYC. Details on how we made these arrangements are set out below.

We then ventured on to the pre-transplant medical testing component – a biggie!! Here’s a list of the testing we completed:

  • Dexa Scan (bone density scan to measure calcium/minerals in your bones)
  • CPET (Cardiopulmonary Stress Test) /VQ Scan (measures air and blood flow in your lungs)
  • Cardiac Cath (to learn how well your heart is working)
  • Echocardiogram (ultrasound exam of the heart)
  • Upper GI Series (xrays taken on your gastro-intestinal tract)
  • Six minute walk test
  • PFT’s
  • Arterial Blood Gas
  • Chest Xray
  • Colonoscopy
  • CT of the Chest
  • Up-to-date Immunizations

With the exception of the chest CT scan, Columbia let us complete all of the testing locally. The local CF team facilitated scheduling and forwarding results to transplant team. We got copies of the test results for ourselves as well.

The testing is not as intimidating as it looks! We had to do all of our testing in an expedited fashion, but we managed it. We went together for most of the testing, though my husband drove himself on good days; he just took plenty of oxygen and allowed time to walk slowly and take breaks. We tried to look at it as a to-do list – happy to cross each one off when completed. We took every opportunity to go to lunch together or do something enjoyable to accompany the appointments. There was plenty of emotion and angst to process, so trying to fit in time together as a couple to vent or talk about something completely unrelated to transplant was therapeutic for us.

Once all the required testing was complete, we went to Columbia to make final arrangements. It was a LONG day, but we were well prepared to make the most of it. I strongly recommend that you write lists of questions for each expert you will meet. I even color-coded my notes so that when we got home and reviewed the vast amounts of information we received, we knew who said what. For example, when I spoke with our social worker, I took notes in purple; my notes from the surgeon were in a different color, etc.

Here are the people we spoke with in one day:

  • Financial coordinator The financial coordinator researched our specific insurance coverage AND medication coverage to ensure that the common anti-rejection drugs would be covered and if not, to make sure we had the resources to pay for them (co-pays, etc.). They must make sure that you’re able to afford the post transplant medications because the number one reason for failure of transplant is not taking meds – it’s super important that you’re able to comply with the medication regimen post transplant.

  • Nutritionist We met with a nutritionist to discuss post transplant dietary restrictions and make sure we were able to comply with them. We also discussed current nutritional needs and she gave suggestions/recommendations for CF related issues.

  • Psychological review There was a one hour visit with a transplant psychiatrist. We joked about this at the time, but learned post transplant why this is required. The combination of being away from home, the intensity of the surgery itself, and the medication side effects takes a heavy toll on emotional bandwidths. We relied heavily on the doctor from our CF clinic, friends from home and our nurse near the hospital to help us through some difficult days post-surgery.

  • Social worker consultation Our social worker at Columbia was (and still is) the liaison for coordination of the whole transplant team and communication with them. We had a lengthy discussion about travel to Center, when “the call” would come, lodging nearby for the first 3 months post-transplant, what kind and how vast of a support system we had. Perhaps most importantly, we discovered the location of the nearest Starbucks. 🙂

  • Surgical consultation A meeting with a cardiothoracic surgeon describing the surgery itself, the medications and their side effects. We didn’t know this ahead of time, but the surgeon we met with here ended up being the surgeon who saved my husband’s life (they rotate between three surgeons, so it was unknown if he would be “the one”). I recommend you be as mentally fresh as possible, because the surgeon can answer questions that will be difficult to have answered by anyone else – and the person that in our experience we’ve (understandably) had the least amount of access to.

I can’t emphasize enough, make sure you have questions ready. The transplant team will give you general information, but you need to be prepared to ask about topics important to you. These people (especially the surgeon!) are not easy to get in touch with and you may not see them again until you have your surgery – or after. Take full advantage of the time you have with them at these preliminary meetings. The more you learn in advance, the easier it will be to face the challenges that you will undoubtedly encounter on your journey into Transplant World.

Once we completed the introductory meetings and all testing was finished, we had another appointment with our Transplant Pulmonologist. He informed us that we were accepted into the program and, a few weeks later, we received notification that we were placed on the United Network for Organ Sharing (UNOS) list for lungs. You can find additional information about UNOS at http://www.unos.org/, but the information which was most helpful to us was to know that there is a lung allocation score assigned to each person on the list. The score is designed to move the sicker people to the top of the list, NOT the ones who’ve been on the list for the longest period of time. We were told that, because of my husband’s height and blood type, he would likely be transplanted sooner rather than later – and that is exactly what happened.

Upcoming Events

  1. CFFC Family Education Day 2019

    June 8 @ 10:00 am - 2:00 pm