Lung Transplant Evaluation – Duke University Medical Center – Completed

I was going to post daily about the Lung Transplant Evaluation week at Duke, but honestly, we just didn’t have a lot of free time to do much of anything. Almost every day, we had appointments stacked one on top of another. Lots of appointments and lots of waiting. By the time we got home from all of the appointments, we were usually pretty beat. It was dinner, then bed time. Rinse and repeat the next day.

So, here’s a rundown of our schedule for the week, starting on Monday:

Day 1

  • 8:00 AM – Transplant Orientation
  • 9:30 AM – Labs/Bloodwork at the Clinics 2F
  • 10:30 AM – Barium Swallow test for acid reflux
  • 12:00 PM – Meet with Social worker
  • 1:00PM – Cardiothoracic Surgeon (Dr. Davis)

The orientation was great because it gave us a summary of the week to come and what to expect.  It also gave us a chance to meet with all of the other patients and caregivers going through the same thing as us this week.  This is important because these were the same people that we saw all throughout the week at the different appointments.  It was great to hear everyone else’s story.

The barium swallow was probably the longest wait time all week.  It took us almost an hour and  a half to two hours to actually perform the short test.  The doctors determined that Anya did indeed have acid reflux, which we already knew, and that they would most likely perform the Nissen Fundoplication procedure on her after her transplant.  The reason for doing the procedure after the transplant is because the swelling has to go down before they do it.

The social worker meeting was pretty straight forward.  She just wanted to make sure that Anya had the proper support to get her through this long journey.  She asked a few questions about who was going to be the primary caregiver (me), and asked for one or two secondary caregivers.  The primary caregiver must be able to relocate with the tranplantee and stay with them until they are given the okay to go back home, post transplant.  The secondary caregiver is like a relief pitcher in baseball.  Just in case the primary can’t be with the tranplantee, then the secondary caregiver must be present.

The cardiothoracic surgeon, Dr. Davis, was a scary dude.  Luckily we saw him two years ago, so we knew what to expect. He basically told us about all of the things that could go wrong during the transplant process, in addition to the survival rates of lung transplantation.  We didn’t feel great after that meeting to end the day…as a matter of fact, Anya cried a little bit, but things definitely got better from this point forward.

Day 2

  • 9:00 AM – Liver Biopsy
  • 1:40 PM – Cardiac consult for Thursday’s heart cath
  • 3:30 PM – Meet with Pulmonary Transplant, Dr. Laurie Dee Snyder

The liver biopsy was the big event of the day.  We arrived at the Duke Clinic north radiology department around 9am, and it wasn’t too long before they wheeled Anya back into the operating area.  They gave us a short rundown of what they were going to do, and how long it was going to take (about an hour to an hour and a half).

By the third hour, I started getting a little nervous.  Around 1pm, that’s when my pager went off.  I felt a little relief.  Anya barely slept the night before, and had a really hard time breathing the morning of the procedure, but it looks like everything went smoothly.  They were going to go through her neck to get the biopsy, but they ended up going through her abdomen area.  That’s kind of why it took a little longer.

By 1:40pm, Anya was alert enough to meet with the cardiac surgeon.  This meeting wasn’t too exciting.  The doctors just wanted to make sure that she was prepared for the heart cath procedure on Thursday.  She did have to take a pregnancy test, which was just a simple urine test.  That’s about it.

The meeting with Dr. Snyder at 3:30pm was a lot more informative.  She looked at all of Anya’s up-to-date test results, then told us about some of her concerns, and concluded that Anya was indeed in her “window” for transplant.  One of the important things that we learned in this meeting was their concern with Anya’s liver and possible cirrhosis.

The liver serves a critical role in lung transplantation because it’s put through a lot of stress.  The liver has to be strong enough to get her through the lung transplant.  Since Anya’s previous tests showed that she had some pre-cirrhosis activity, a lung/liver transplant, instead of just a double lung transplant, was a possibility.  Unfortunately, a lung/liver transplant is a lot more complicated, and a lot longer wait time than the average 12 days for a lung transplant.  Definitely not something that we wanted.  The good news that came from this meeting was that a lung/liver was an option, and not a dealbreaker.

Day 3

  • 8:00 AM – Pulmonary Rehab Eval
  • 9:00 AM – Kidney Function test
  • 3:00 PM – Meet with Psychiatrist, Dr. Gregory Stonerock

Day 3 was a little bit of a relief from Day 2.  We started pretty early at 8am at the pulmonary rehab center off of Hillandale Road.  Upon initial entry into the center, I was very impressed by the cleanliness and size of the place.  From there, we met with two pulmonary rehab specialists.

After asking Anya several questions about her current state of health, including oxygen levels, they performed the 6-minute walk on Anya.  She was able to walk 1156 feet in 6 minutes, and went up to 8-liters of oxygen near the end.  The good news is that she passed the test of 1000 ft in 6 minutes, the bad news is that she went up to 8-liters.  Higher than the 4 liters that she needed just about a month ago.  But with that said, there’s no limit to the amount of oxygen that a patient needs to complete the walk.  The whole purpose of the pulmonary rehab is to get the patient to be strong enough to endure the transplantation process.

The kidney function test at 9am was relatively straight forward.  They did have to stick Anya with a needle, four times, to get the IV in, but after that, it was relatively smooth sailing.  For this kidney test, they pump the patient with a small amount of radioactive fluid, then draw blood after 60 minutes and 3 hours.  From there, they can determine how well the kidney is functioning.  There was no problem with Anya’s kidneys, so that was welcome news.  Just another small hurdle with a checkmark next to it.

The 3pm meeting with the psychiatrist went smoothly as well.  This meeting was all about finding out if the patient was mentally prepared to handle the lung transplant.  Depression, anxiety, and overall mental health was their top priority.  The meeting ended with the doctor giving us the thumbs up, so again, another checkmark.

Day 4

  • 12:00 PM – Heart Cath and Echo Bubble in the main hospital, 7th floor

It was a welcome change to only have one appointment for the day.  It was also nice to be able to sleep in a little bit, since the procedure was scheduled for noon.  Once we got to the hospital, it took quite a while to get all of Anya’s information, and prep her for the procedure.  The procedure itself only lasted about 15-20 minutes, but with the prep and recovery, we didn’t get out of the hospital until about 6pm or so.  The doctor did notice a little extra “pressure” around one of the heart valves, but it was more of an oddity, than a deal breaker.  He said that there will most likely be a “discussion” about the irregularity, but nothing to be overly concerned about.  Good news, I guess.  We’ll know more about this next week.

The one thing that sucked about this appointment was that Anya wasn’t able to eat or drink anything from midnight the night before until after her procedure.  I was starving by 9am, so I can’t imagine how she was feeling.

Day 5

  • 9:00 AM – Transplant Financial Coordinator
  • 10:00 AM – Nutritionalist
  • 11:30 AM – Infectious Disease, Dr. Cameron Robert Wolfe
  • 2:00 PM – VQ Scan

Day 5 started with the financial coordinator Ms. Julia.  She gave us some pretty good nuggets in regards to what to do with our current situation.  Anya is on Medicare with part D drug plan.  The problem with transplantation is that Medicare only covers 80% of all costs.  With lung transplants costing around a million dollars, 20% is still roughly $200k.  She recommended that we go with a Medicare Advantage plan, since Anya’s under 65 years old, and this would really limit our out of pocket costs.  Since the enrollment period is already over (usually from October to December), our only option at this moment is to apply for Medicaid, which would cover almost all of the costs.  So, that’s what we did.  Unfortunately, we don’t know how long it’s going to take, and if we’ll get full coverage or not.

The main stipulation of going to transplant is to have at least $25,000 in cash and along with medicare + part D, or a regular employer health plan.  As a matter of fact, they make you send a bank statement to them showing that you have this money available.  Without this, it could be a deal breaker.

Needless to say, it was very interesting seeing the breakdown of all of the costs associated with the transplant.  Mind blowing to say the least.

After our meeting with the financial coordinator, we met with the Nutritionist.  Anya currently weighs around 89-94 pounds.  The range for transplant eligibility at Duke is between 17 and 27 BMI.  Thankfully, Anya’s has a BMI of around 18.3, so she just needs to maintain her current weight to go to transplant, so the doctors gave us some ideas to add some extra calories to her diet.  Cheese, butter and milk seem to be good ways of adding a little bit of calories to meals, so we’re just going to go with that.  Another checkmark.

Our meeting with the infectious disease doctor was very informative.  Anya’s had a few bouts of fungal and bacterial infections over the past few years.  Of concern to the doctor were the aspergillus and pseudomonas infections.  Fortunately, Anya has responded well to these infections with the help of Cipro and Posaconazole (Noxafil).  She’s had some skin cancer problems with Vfend, which is the standard drug to treat aspergillus.  Anyways, the doctor was blunt and told us that he didn’t forsee any major obstacles from his side, since she’s had relatively few problems with infections, and responded well to treatment.  Another checkmark.

The last appointment of the evaluation was the VQ scan.  It took about an hour and a half total, but it was relatively quick and painless.  Another IV, another injection, and that was that.  From what I understand, the VQ scan is simply to determine whether a  patient has a blood clot or not.  There’s probably more to it, but that’s what I understand.

Summary

Today is the Saturday after the week long lung transplant evaluation at Duke University Medical Center.  It was one hell of a long week, and we were excited to get back to our two dogs, and sleep in our own bed for a change.

Overall, I think the evaluation went as well as it could’ve gone.  Our main concern was the liver biopsy.  From what I could tell, I think we’re gonna be okay with that.  Meaning, they’ll only have to do a lung transplant and not a lung/liver transplant.  We won’t know for sure until next week.  We’ll be expecting a call from Tuesday onwards.  Hopefully, it’ll be good news.  Good news means that they’ve decided to move us onto the relocation phase, which also means that we’ll be moving down to the Durham area possibly in a few weeks.

Lung Transplant Evaluation – Duke University Medical Center: Day 1

Day 1 was a long one.  A lot more of waiting than anything.  Here was our schedule:

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What’s not shown on the schedule was the transplant orientation, which started at 8am and lasted about an hour.  We barely got any sleep the night before, and had to wake up at 6:45am, since the drive to the hospital was about 30 minutes long.

The orientation was pretty harmless.  We did the exact same thing a year and a half ago when we came down to Duke for the very same reason, so we knew what to expect.

So, the three phases of lung transplantation at Duke are the following:

  1. Evaluation (5 days, lots of tests)
  2. Relocation (Move to Durham; expect to stay about 6 months)
  3. Pre-tx pulmonary rehab (23 days), wait list, retransplantation, Post-tx pulmonary rehab

With the evaluation phase, they test everything under the sun to make sure that the transplant patient will be able to survive the transplant.  Yesterday, the transplant clinic drew 29 vials of blood from Anya and performed a barium swallow test to measure her acid reflux problem.  Today, she’s in the middle of a liver biopsy, since CF patients generally have liver problems due to the amount of drugs that they take.

The evaluation phase is pretty mentally and physically draining, since a ton of tests are done, there’s a lot of waiting around, and so much of whether a patient moves on to the next phase rests with these tests.  Just be prepared.

The relocation phase is basically moving to Durham or within 20 minutes of Durham for about 6 months.  The primary caregiver must be able to commit to being with the transplant patient for the duration of the transplant, and cannot be a paid person.  A secondary caregiver is also necessary, in case the primary cannot be there for one reason or another.  Those are about the only requirements.

Once the transplant patient and the primary caregiver has been relocated to Durham, the next phase is the 23 days of pulmonary rehab.  The last time we came here, they were pretty strict on having all patients pass the rehab process, but it looks like they’ve relaxed those requirements since then.  On the orientation document, it now says something to the effect of, the amount of days in rehab will vary on a patient to patient basis.  One of the doctors told us that the patient must pass the following tests:

  1. Walk 1,000 ft in 6 minutes.
  2. Walk 1/2 miles in 20 minutes.

If the patient can pass these tests, then their pulmonary rehab stay may be shortened.  From talking to some of the other caregivers, the patient can use as much oxygen as necessary to pass the above requirements.

In addition, one caregiver that I talked to told me that Duke’s intensive rehab process literally saved her husband’s life.  At least, enough to give him the hope of getting transplanted.  The patient went from not even being able to get out of the car because his lungs were so damaged due to Pulmonary Fibrosis, to passing the above tests, and not even needing a wheelchair for his week long transplant evaluation.

The doctors at our main transplant center have been urging Anya to go to pulmonary rehabs for months now, but we’ve kind of neglected it, mainly because Anya was still doing every day activities with relative ease.  Much has changed over the past two months, and after hearing this guy’s story, we’re definitely going to start the rehab process as soon as we get back to Virginia.

That’s about all we learned today.  Now, we just have to finish all of the evaluations and tests this week, then the doctors will meet next Tuesday to determine which of the following patients are eligible to move onto the relocation phase.  Hopefully, we are one of them.

We could be moving down to Durham in two weeks.  I’m actually hoping that we get moving soon because Anya’s breathing seems to be getting progressively worse.  She can barely walk from the bathroom to the bed without getting winded now.  I am hoping that it’s just the cold weather down here, or perhaps allergy related.

Til tomorrow…

Scared

For those who know me, being scared isn’t an emotion I often portray.  Having survived my struggles with cystic fibrosis and receiving my new lease on life at age 33, I thought that only better days were ahead.  The thought that I would one day be back in this position – waiting for the evaluation, waiting to be listed, waiting for “the call” – never occurred to me prior to my first transplant.  At that time, I was full of hope and assuredness that the transplant would eventually happen and all would be well.

When I look back on that time now, I feel quite silly not knowing what I should have known. Prior to my first transplant, my main concern was receiving new lungs and having the ability to breathe freely.  Unfortunately, naivety can happen when you’re too self confident. And although I’d like to blame my lack of knowledge on those charged with feeding information to me prior to transplant during all the “What-to-Expect” workshops and  the like, it was my responsibility to know the basic challenges of receiving such a gift before accepting it.

So today, nearly six years after my first transplant, I’m faced with the incredible task of bilateral lung transplant all over again due to the chronic rejection of which I was shamefully unaware.  Having been on this downward cycle for nearly two years, I know all too well that things aren’t going to get better without another life saving miracle.  And I’m scared.  Scared that the evaluation won’t go well, scared that I won’t be listed, and scared that I won’t receive “the call” that lungs are available.  But mostly, I’m scared of what will happen to my family if I don’t receive another chance.