Monday, April 4 was another full day of activity at the UW Medical Center. They redid all the pulmonary function tests, did a 6 minute walk test to monitor my oxygen saturation levels, took what seemed like gallons of blood and sent me home with a container to collect 24 hours’ worth of urine.
Dr. Raghu also ordered a “sniff test”. This is a fluoroscopic procedure to test that my diaphragm is functioning correctly. With the prior injury that affected my diaphragm, (see blog #1), he wanted to ensure there were no issues remaining. There were none!
These tests were to provide up to date details to include in my workup for the transplant committee review. Meet some of the support team:
On Thursday I returned to meet with the nutritionist, Susan and Angela, the social worker. I learned later that both ladies are on the transplant committee. My weight and continued nutrition plan were the topics that Susan and I discussed the most. I had dropped two pounds from the prior week, putting me on the very edge of the body mass index maximum of 30. More about BMI will be discussed below. Angela, the social worker was yet one more terrific person. It was supposed to be with Elaine and me both, but that detail slipped through the cracks. From my perspective, this was a good thing because it gave me a chance to drop my guard and discuss many things that I have been suppressing. As you’d expect, it did get pretty emotional. However, being able to do a full dump was a relief. I felt much better after talking with her.
We had to cover some of the unpleasantries though. She gave me the first official batch of forms that must be completed. One was to define who I assign as having power of attorney should I become incapable. The other she called “the pull the plug” form. I learned that this is different from a “do not resuscitate” (DNR) order. As a transplant patient, she explained that they would do everything possible to bring me back from a life threatening event. However, should the worse happen and I entered a persistent vegetative state, the “pull the plug” order would prevail. That is my wish. I do not want to be sustained if all hope is gone. Let me go. Elaine and I have discussed this and I will be explaining this to my kids tomorrow. Elaine will be designated with this authority.
Elaine got to meet Angela yesterday after our other meetings. That went very well and Elaine got to ask many questions. More below …Yesterday, two more tests and meet the surgeon:
Before meeting Dr. Mulligan, I visited the UW Roosevelt Clinic for a bone density test and a chest X-ray. The test was quick and not invasive, but the technician twisted my leg in an uncomfortable position to get a clean shot of the large bones in my leg. The chest X-rays literally took 10 seconds. This should be the last of the major tests. I turned in the 24 hours sampler and they drew blood to correlate with the tests on the other bodily fluids. Hope it’s normal, but it was over a gallon of pee in 24 hours!
Meet the surgeon: This meeting was the best so far. Elaine and I met with Dr. Michael Mulligan, a specialist in Thoracic Surgery (Cardiothoracic Vascular Surgery) at the University of Washington Medical Center. Dr. Mulligan is the lung transplant surgeon, having performed over one thousand procedures. His complete profile is available here: http://www.mesothelioma.com/treatment/doctors/dr-michael-mulligan.htm. You can see and hear him speak at: http://www.youtube.com/watch?v=SwXvtpDOBTk.
We were a little surprised for a number of reasons. First, I was advised to expect to wait to see him. We got right in and waited less than five minutes. Second, he was much younger and more handsome than I expected. Watch his YouTube video above to see what I mean.
He was extremely relaxed and open (We later learned he had just returned from his Hawaii vacation). He took as much time to talk to us as we wanted. The first words of out his mouth were that he had reviewed my complete history and the entire test results through yesterday. He smiled and said exactly what we had hoped to hear; he saw nothing that was a contraindication to prevent me from being added to the list! My weight:
Dr. Mulligan took the time to explain the BMI/weight target. The statistics are that those above a BMI of 30 and those below 26 don’t fare well in lung transplantation. He wants me at 28. That means I have to be about 185-190. That’s only 10-15 more pounds to lose. I’m convinced I can do it. He also reviewed the procedure. Depending on whether it’s a one or two lung procedure, he will make an incision above the diaphragm. This will include removing part of the last rib. Dr. Mulligan explained that Pulmonary Fibrosis patients have two conditions that affect the space in the rib cage.
Those with volumetric issues, (lungs can’t pull in enough air), have an additional problem where the diaphragm gets pulled into the rib cage, reducing the volume of the space. This effectively shrinks the lungs space. This means that a normal lung might not fit in the reduced space. The other condition, (and my case), the lungs continue to pull in normal volumes of air, but due to damage to the bronchioles and the alveoli prevents oxygen from being absorbed into the blood. See http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002078/figure/A001087.B17100/?report=objectonly for details of the lungs. Since my lungs are of normal size, but just don’t work well, normal sized lungs should fit fine. He explained further that even before he installs the new lungs, they can prepare them for optimal fit and function before they go in.
Dr. Mulligan explained that there are several factors that constitute the matching criteria. Blood type and body size are the two biggies. My blood type is B+ which is on the rare side. Both he and Angela suggested that this could work to my favor, since there would be less competition. However, it does reduce the donor pool as well. So hopefully it’ll balance out. The recovery time was discussed. Dr. Mulligan said to expect 11 – 14 days in the hospital and 4 – 6 weeks of recuperation at home. Elaine asked about the level of care required during that period. He said that it was important to have a 24/7 plan in place, but 24/7 care isn’t required. This is a major relief should this happen during the school year. In a nutshell, those of you who have volunteered to help will be on the “on call” list to run me to the emergency room if something goes wrong. Rejection and infection are the two keys to watch for. Both have identical symptoms; fever, shortness of breath and flu-like symptoms. I’m to head to the hospital immediately if these appear.
The good news is that Dr. Mulligan’s instructions are to head to Valley Medical first, since Valley and the UW Medical Center are now affiliated. He said that most of the pulmonary staff at Valley were trained at the UW and are very familiar with the transplant complications. They will stabilize me and immediately arrange to ship me to the UW. That’s good news since we live very close to Valley Medical.Elaine and I were very impressed with Dr. Mulligan. Much to Elaine’s surprise, Dr. Mulligan asked which of us is the teacher. When Elaine spoke up, he said he wanted to thank her for her contributions. This spawned a few minutes of discussion of his philosophy of educating his 7 and 9 year old kids (Mercer Island schools of course). That bonding further added to our positive opinion of the man.
Elaine meets the social worker: After meeting with Dr. Mulligan, we met Angela in the lobby for almost an hour. Elaine and she got along great. I could tell that Elaine was feeling good after they had the chance to talk.
Last step:
The last step to complete the data collection is my visit to the dentist next Monday. Once that’s done, the final pieces should be ready for submission to the transplant committee. The pulmonary team is heading to a conference next week. That means that the committee can’t meet until the week after next, so we’ll have to wait until then to hear the final determination. When asked what could go wrong, all parties suggested that some unseen complication like cancer cells showing up in the wrong places, or some other issued exposed by the chest X-ray or blood work. All said they didn’t expect that to happen and we should have every reason to expect positive results! YEAH BABY!!
Thanks
I want to take this opportunity again to thank all of you who continue to support Elaine and I emotionally and spiritually. Those of you who indicated willingness to help where you can, will be getting a call to ask your permission to add you to the support team to build that 24/7 support plan. No worries if you have a change of heart. Thanks to everyone!
I want to take this opportunity again to thank all of you who continue to support Elaine and I emotionally and spiritually. Those of you who indicated willingness to help where you can, will be getting a call to ask your permission to add you to the support team to build that 24/7 support plan. No worries if you have a change of heart. Thanks to everyone!
