The Transplantation Class #5

Yesterday Elaine and I attended the Lung Transplant Education Class at the UW Medical Center. This was presented by Kim Hoffman MN, RN and one of the Transplant Coordinators. Kim began with some statistics.

History of transplantation

• 1950 – First kidney transplant
• 1963 – First human lung transplant
• 1963-1983 only 40 lung transplants performed (still experimental)
• 1983 – First “successful” transplant

UWMC Lung Transplant Program

• Established in 1991
• First lung transplant Spring 1992
• Over 580 done to date
• Currently performing 50+ per year

What to expect in preparation

Tons of testing to look for contraindications (disqualifiers)

• Heart
o Echocardiogram
o Heart Catheterization
• Lungs
o Chest X-rays
o CT Scan
o VQ Scan (Ventilation (V) and blood flow (Perfusion/Q))
• Liver
o Blood tests
o CT scan
• Immune System
o Virus exposure
o Common childhood illnesses

If all goes well after all this, the wait begins. The selection committee, which includes the surgeons, pulmonologists, nurse, social workers, nutritionist and let’s not forget the finance team, reviews each patient applying for the program. Those that are deemed acceptable are then added to the waiting list and an individual plan is developed.

What will it cost?

The patient’s insurance coverage is updated as closely as the general health of the patient. We were advised that the procedure will cost $275,000 to $1,000,000 depending of patient specifics. Yikes!

UNOS

The centralized database of organ donors and recipients is the United Network for Organ Sharing or UNOS, ( www.unos.org). The active waiting list maintained here is over 105,000 people. That list breaks down like this:

• Kidney – 78,000
• Liver – 17,000
• Lung – 2183
• Heart – 2670
• Pancreas – 1644

The next obvious question becomes “How long must I wait?” In the early days of organ transplantation, the US median waiting time was 684 days. The good news is that has improved over time. In 2007 the waiting time at UWMC averaged out at 132 days after acceptance. Someone actually waited 0 days. The longest wait at UWMC was 678. So the clear challenge for me is to get on the list ASAP!

Along with UNOS, a new “lung allocation score” has been accepted nationally. This minimizes any hanky panky that could occur across UNOS regions. The score ranges from 0 – 100 and takes into consideration many factors. These include the general health of the patient, their age, body mass index (BMI), kidney function and tons of other factors. The average score across the 2183 lung candidate is between 30 – 40.

There are 13 UNOS regions. UWMC is the only transplant center in region 6 which includes Washington, Alaska, Montana, Idaho and parts of Oregon. A recipient can benefit from organ availability from any region. UWMC has a specialized team that is available on a moment’s notice to fly anywhere in the country to bring a matching organ for a patient in their program.

What happens when you get the call?

If all these factors fall into place, next I wait for the call. This occurs when a potential organ(s) are identified. I have to be able to appear at the hospital no longer than 3 hours after the call. They will prep me for surgery and wait for the organ to arrive.

One last hurdle must be cleared. When the organ arrives, it is tested one final time for “viability”. Did it arrive undamaged? Was the preliminary match data accurate? Is it within the ischemic time limits? (The time that an organ is outside the body and not supplied with O2)

When one or more of the negatives happen and the organ is unusable, it’s considered a “dry run”. You’re sent home to wait again. We were advised to expect at least 1 or 2 dry runs before the real deal can happen!

If everything is favorable, the operation begins. The technique the UWMC uses is called a “clam shell” incision (thoracotomy). If both lungs are being replaced, the surgeon literally cuts you in half, below the rib cage, across your middle. Ouch! The surgery generally lasts between 2 and 6 hours. Cardiopulmonary bypass is standing by should both lungs are being replaced. This keeps the blood saturated with oxygen and relieves pressure on the heart, reducing chances of damage.

Risks and Complications

All the factors and risks common with any major surgery apply in spades with lung transplantation. Infection, rejection, bleeding, side effects of general anesthesia, graft dysfunction (leaking stitching!) etc., must be controlled.

I will be in the intensive care unit for 3 – 4 days following surgery, on mechanical ventilation, tubes sticking out of every orifice, and the magic pain killer button in my hand! The total hospital stay averages 10 – 14 days. Some with complication can be in for months!

Care after transplant

One thing is for sure; Life will never be the same after the transplant. Constant monitoring of pulmonary function, watching for signs of infection or rejection becomes part of daily life. The infection and rejection symptoms are almost identical; fever, shortness of breath, cough, “flu-like” symptoms and drops in spirometry values (volume of air the new lungs can push out and draw in).

Extra care must be given to cleanliness. Washing hands, avoiding contact with sick people, no cat litter boxes and wearing of a N95 face mask when out in public, are all precautions that can't be ignored. We were advised that almost every patient experiences some mix of infection and rejection. If caught early enough, drug dosages can be adjusted to help the patient get past these episodes.

Medications

Large dosages of anti-immune system suppressants at the onslaught are normal (these taper down as healing continues), pain meds, antibiotics, statins (Lipitor), calcium, magnesium, vitamin D are just a hint of the regiment to expect. This becomes part of your daily life, for the rest of your life! What is the estimated annual cost of the medications? In today’s dollars, $36,000/year!

Survival: What can I expect?

The numbers continue to improve year over year as the procedure becomes more prevalent and new drugs and techniques are developed. UWMC’s number for the period from 2000 – 2008 are:

• 1 year survival – 85% (national average 73 – 94%)
• 3 year survival – 73%
• 5 year survival – 62%

This data is maintained at www.ustransplant.org. As time goes on the number are expected to continue improve.

Kim and her peers handled what could have been a very depressing class in a markedly upbeat and encouraging way. They gave us hope that we can survive, that systems, people and programs are in place to help us progress through the process. I'm very upbeat and positive that a good outcome will result if I follow their plan and pay attention to the details.

Let the testing begin!