Much to our surprise and delight, the wait for a donor lung magically appeared on Sunday July 3rd, 2011. I got the call that we had expected to wait at least months for and maybe years. A donor was identified; head to the UW Medical Center immediately; less than 4 weeks after I made the wait list.
On July 4, 2011, I received a left lung transplant and I am currently recovering at the hospital. The recovery road has been rocky so fair. An elevated white blood cell count is the current challenge, along with an oddity called subcutaneous emphysema. (http://en.wikipedia.org/wiki/Subcutaneous_emphysema). This little gem is a air leak likely in the transplant site somewhere, that allows air to build up behind the skin. In my case, this caused my face and neck to swell to monsterous proportions. It's not life threatening into itself, but does indicate a complication the surgery team is trying to resolve.
I'm on strong antibiotics, immunosuppressives of all sorts, antifunguls, vitamins and other drugs to offset the side effects of the other drugs. My spirits are good, but I'm looking forward to going home, once we get past the current batch of challenges.
I'll will continue to blog as energy levels permit. I'm worn out right now and need a nap. ;-)
Saturday, July 16, 2011
Wednesday, May 18, 2011
Blog #9 : The Real Wait Begins ...
Well, yesterday was a big day. Kim from the UW Transplant team called to inform me that all the testing, preliminary screening, education and interviews had finally paid off! She was listing me on UNOS, the central transplant organization that coordinates donors, recipients and the transplant centers for North America, (http://www.unos.org/). This means the real wait begins ...
I had the matching blood work done two weeks ago and began the Hepatitis B vaccination regime, a series of four shots over six months. This vaccination series will allow me to accept a donor that had been exposed to Hepatitis B in their lifetime, while minimizing the risk of my contracting the disease. This expands the donor pool a little. Since I have B type blood, which is a rarer, anything that increases the odds in my favor helps. This are two of the selection criteria items that are constant. The others include, current physical condition, (I'm still losing weight!), the progress of the disease, and others I can't remember right now...
I'm due back for check up in late June when they'll retest the pulmonary functions, (my least favorite part of the testing!), give me the second dose of the vaccine and redo some blood tests to refresh my records. I'll be subject to this every three months until the "event."
In the meantime the medical bills have begun to come in. That's the scary part. So far the preliminary testing has surpassed $30,000. As stated earlier, the projected total will fall between 4$750K and $1M! The insurance from Pitney Bowes has covered all but 20% and now the task is to begin to pay the copays. The COBRA of these benefits are good for 14 more months.
I'm doing menial work now and need to find a real job soon. I'm looking at several options, since Social Security Disability has a five month wait period that ends in August, income is necessary. I'll likely need to supplement that SSA income to stay ahead of the game. I hope the economy becomes a little friendly to baby-boomers soon!
I want to take this opportunity to thank all my followers, supporters, family and friends who continue to provide encouragement, prayers and moral support. It really does help in my weaker moments.
I love all you guys!
Hopefully, Blog #10 will been a new discussion; The Recovery Phase!
I had the matching blood work done two weeks ago and began the Hepatitis B vaccination regime, a series of four shots over six months. This vaccination series will allow me to accept a donor that had been exposed to Hepatitis B in their lifetime, while minimizing the risk of my contracting the disease. This expands the donor pool a little. Since I have B type blood, which is a rarer, anything that increases the odds in my favor helps. This are two of the selection criteria items that are constant. The others include, current physical condition, (I'm still losing weight!), the progress of the disease, and others I can't remember right now...
I'm due back for check up in late June when they'll retest the pulmonary functions, (my least favorite part of the testing!), give me the second dose of the vaccine and redo some blood tests to refresh my records. I'll be subject to this every three months until the "event."
In the meantime the medical bills have begun to come in. That's the scary part. So far the preliminary testing has surpassed $30,000. As stated earlier, the projected total will fall between 4$750K and $1M! The insurance from Pitney Bowes has covered all but 20% and now the task is to begin to pay the copays. The COBRA of these benefits are good for 14 more months.
I'm doing menial work now and need to find a real job soon. I'm looking at several options, since Social Security Disability has a five month wait period that ends in August, income is necessary. I'll likely need to supplement that SSA income to stay ahead of the game. I hope the economy becomes a little friendly to baby-boomers soon!
I want to take this opportunity to thank all my followers, supporters, family and friends who continue to provide encouragement, prayers and moral support. It really does help in my weaker moments.
I love all you guys!
Hopefully, Blog #10 will been a new discussion; The Recovery Phase!
Tuesday, April 12, 2011
Blog #8
Report on two weeks of activity:
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.
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.
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.
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!!
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!
Friday, March 25, 2011
Blog #7: The Results
March 25, 2011
Today was a good day! Elaine and I met with Dr. Raghu and Dr. Kim, one of his staff physicians, to review the tests that I described in Blog #6. There is reason to rejoice!
Acid Reflux/GERD Status:
Let’s start with the testing for the acid reflux. The 24 hour pH test showed normal levels of stomach acid. The manometry was also within normal range. This test indicated that the esophageal sphincter, the valve between the stomach and the esophagus, closed a little more tightly than most. Dr. Kim said that in my case this wasn’t an issue. One hurdle cleared!
Cardiac Results:
We knew after the echo-cardiogram that there were no major issues. Dr. Kim said that the cardiac catheterization only showed that the heart chamber that provides the pulmonary blood flow was slightly enlarged. This would be expected since my lungs’ capacity to process oxygen is reduced by 70% and therefore pumps more blood through to compensate. Dr. Raghu reassured us that this was not a concern.
Now an interesting sidebar; Dr. Raghu said that a recent study has shown that an unlikely pulmonary treatment has provided improvement for cardiac enlargement like mine. His concern is that it’s still considered experimental and therefore there could be insurance issues paying for the drugs. The drug in question; Viagra administered three times daily! Hoooo Raaa!! ;-) Elaine failed to see the humor! Let the joke writing begin!
Finally, there was only a small surprise. Dr. Kim said that Dr. Raghu will want to have my diaphragm function tested as a precaution. You might remember from Blog #1 & #2 that my phrenic nerves, those that control the diaphragm, were pinched by a chiropractic manipulation in 2004. This resulted in bilateral diaphragm paralysis. This ultimately healed and has been functional for nearly three years.
The bugger is that it would have been a simple add-on test to the angiogram ... oh darn they forgot to mention that to the cardiologist! So, they’ll be scheduling another fluoroscopic procedure to confirm normal diaphragm function. One more test bill!
Finally, Dr. Raghu was glad to see I had made progress in losing weight. He also pointed out that I need to get into the weight band ASAP (190 - 200 pounds). I’m less than 10 pounds away from the middle of the acceptable band. I’m 1000% committed to make that happen. Of course their scale and mine don’t match. Mine will be adjusted accordingly.
What does this mean?
Both Drs. Kim and Raghu were very upbeat. We asked the obvious question. Will they represent me to the transplant board? We heard the answer we had hoped for. YES!!
They will begin to prepare my case study, which is presented to the transplant board for review. This is the basis from which they make the decision to approve or reject candidates. I think we both were overwhelmed and didn’t ask the second obvious question of when would this happen?
In the meantime, Kitty the nice nurse who schedules such things, will arrange the diaphragm test, and schedule an appointment with Dr. Mulligan, the surgeon who performs the procedure. Finally, we have to meet with the social worker aligned with the transplant team.
These are all parallel operations. So unless I’m crazy, my diaphragm quits working again and Dr. Raghu’s minions are lazy, we may be close to a positive outcome; to be added to the wait list for new lungs!
Thanks
I want to take this opportunity to thank all of you who continue to support Elaine and I emotionally and spiritually. Your prayers are working and I ask that you continue to drop my name now and then when you speak to your deity of choice. It warms my heart to know I have so many friends and family rooting for me. It makes my day go better and inspires me to continue to stay positive and focused on a great outcome coming hopefully sooner than later. I love all you guys!
Friday, March 18, 2011
Blog #6: Let the testing begin
Blog #6: Let the testing begin!
Revision 2:
Elaine and Karen pointed out that my midnight editing skills were diminished when I posted the earlier edition. I hope that I've caught most of those and fixed the errors. It's good to know that teachers and retired teachers have your grammatical back! Thanks ladies!! ;-)
Thanks goes out to all of you who have asked for the next installment of my blog. I’ve been holding off posting an update to allow for the latest round of tests to be completed. As of Wednesday, March 16, I completed the last of the major tests.
The time line goes something like this:
February 15: Two tests were performed to check on my acid reflux condition.
Esophageal manometry: Test #1
Esophageal manometry is a test used to measure the function of the lower esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus) and the muscles of the esophagus. A sensor string that looked like a copper colored string of pearls was inserted through my nose into my stomach. Although I like to think that I have a high pain threshold, this hurt like hell! It brought tears to my eyes. It was just as much fun when it was removed.
I was asked to swallow a foul tasting concoction that was intended to numb everything along the swallowing path, while providing a known media from which the pressure measurements were made. This test used to determine how well I swallowed and if the sphincter muscle was functioning correctly. More details are available here: http://my.clevelandcliic.org/services/esophageal_manometry_test/hic_esophageal_manometry_test.aspx
24 hour pH study: Test #2
This test involves another string of sensor that was threaded through my nose into my stomach to measure the acid levels up and down the esophagus. This is done over a 24 hour period and regular measurements are stored via a small datalogger I wore around my neck. The next day I returned to the hospital to have the sensor removed and the data captured and sent to Dr. Raghu. I don’t know the results of this yet. More details of this test are available here: http://my.clevelandclinic.org/services/esophageal_ph_test/hic_24-hour_esophageal_ph_test.aspx
February 16:
The pH transducer was removed. This took about 10 seconds to rank out!
Echo-cardiogram: Test #3
This is the ultrasound examination of the heart and its value functions. This was very enlightening and fun to watch. It’s amazing how far ultrasound imaging has come. It was very easy to see the valves opening and closing. I could see my heart’s contractions and I could see the heart rippling as it pumped blood through the its chambers. The nurse technician was very thorough and the test took nearly an hour. A nice animation of the process is available here: http://www.webmd.com/video/echocardiogram
Although she made it clear that she was not the expert at reading the results, the nurse technician assured me that she saw absolutely no abnormalities! HUUUUU RAHHH!
Meet the cardiologist:
To wrap up the day, I meet with Dr. Goldberg, the cardiologist who read my echo-cardiogram. He was quite the stylish dresser. Very trending multi-colored glasses and a very nice haircut! He was, however, very professional and made me very comfortable discussing my situation with him.
Dr. Goldberg indicated that the echo-cardiogram results was excellent and that if I were a normal patient, he would not see the need for a cardiac catheterization, (also known as an angiogram). But he said that Dr. Raghu and the transplant team are sticklers for detail and will still require we proceed with that test. Dr. Goldberg and his team would perform that test on March 16.
March 7: One more round
Esophagram: Test #4
This is an X-ray test to aid in diagnosing acid reflux (Gastroesophageal Reflux Disease (GERD)) and to establish whether normal functioning of the upper GI exists. Often referred to as the “Upper GI” test, I was asked to swallow a barium mixture that actually tasted like a banana milkshake. Not terribly unpleasant!
The doctors and technicians had me stand on a platform that reminded me of the table in Frankenstein! An automated X-ray machine sweep around you as the table reclined at several different angles while I swallowed what seemed like gallons of the stuff. At one point I was almost standing on my head.
Once it was over, the doctor came out and played a movie of the test showing me swallowing and following the path of the fluid down into the stomach. She also shared good news. Everything was performing famously. Nothing abby normal. (Young Frankenstein reference for you fans of Gene Wilder!)
Next: Meet the Nutritionist
I went into this meeting thinking it was going to be a lecture on how important it was that I lose weight and get myself into the sweet spot of the body mass index (BMI)for my height. Dr. Raghu requires me to have my BMI between 28 and 30, to qualify for the transplant candidate list. My BMI at that time was 31.1, based on my height of 5’ 9.25” and weighing 214 pounds. That means I must weight between 190 to 200 pounds. Not big deal!
FLASH! WEIGHT UPDATE: As of this morning by my scale, weighing my naked body I was at 201 pounds. If I allow for 4 pounds of clothes, that would put me at 205 on their scales. Only 5 pound to go to get in range. I’m back on my 2000calorie diet, managed by my iPhone app LoseIt! Some of you saw the posts on my Facebook page as LoseIt! posted my progress unbeknown to me!
The majority of the meeting was discussing the realities of coping with the side effects of the medications that I’ll have to live with for the rest of my life, AFTER the transplant.
Prednisone, the main drug to suppress rejection, has tons of side effects that range from fluid retention, loss of muscle mass, high blood sugar, elevated cholesterol and more. It’s called a catabolic steroid.
Tacrolimus, Cyclosporine, and Sirolimus are the other drugs that the UW uses regularly for transplant patients. As I blogged earlier, large dosages of anti-immune system suppressants are administered at the onslaught and are normal (these taper down as healing continues). Add in pain meds, antibiotics, statins (Lipitor), calcium, magnesium, vitamin D and you have a hint of the regiment of medications to expect. This will become part of my daily life, for the rest of your life! What is the estimated annual cost of the medications? In today’s dollars, $36,000/year!
March 16:
Cardiac Catheterization: Test #5
As I mentioned earlier, Dr. Goldberg indicated that under normal circumstances, this wouldn’t be required based on the results of the echo-cardiogram, but Dr. Raghu leaves no stone unturned. I suspect that this is part of the reason his program has such high success rates on a relatively new procedure like lung transplants.
Dr. Goldberg explained that there were two standard approaches to this procedure. The older, more established path is making an incision in the groin and inserting
transducers up the femoral artery into the left chamber of the heart and injecting dye that lights up nicely under X-rays.
The less intrusive, newer procedure is to insert a similar transducer in the artery in the arm for left heart testing and another in the artery in the neck. Nice examples with live action pictures can be viewed here: http://en.wikipedia.org/wiki/Cardiac_catheterization
Elaine took the day off to take me, since they heavily drug you into la la land during the procedure. It’s very humbling to put on that drafty hospital gown and lay on a lumpy bed waiting for your time in the procedure room.
We had a terrific nurse name Stacy that conducted the pre-procedure Q&A and helped us stay relaxed. A host of nurses and doctors came in to introduce themselves and explain what was about to happen. A newer Indian doctor, (we missed his name), did a simple squeezing test on my wrist to see if that path could be used for the test.
He discovered that it couldn’t! Damn! Instead of an hour recovery time for the arm/neck procedure, he indicated he felt they’d have to use the traditional groin path. Apparently I have small arteries in my arms, (that explains my cold hands!). They wouldn’t risk the potential damage to the artery that could further reduce the blood flow to my hands. Good decision considering.
When it was time, the IV was placed in my wrist and the happy juice began. I was rolled into the procedure room and of course I had to pee! I walked back out to the bathroom and back and crawled back on the table.
They turned up the juice and the next thing I knew I was back in the recovery room. I had to lie on my back with my legs straight and head down for four hours instead of sitting up and going home in an hour with the arm/neck procedure. Of well, doctor knows best.
It was 8 PM by the time Elaine and I were headed home. I was instructed to stay home and rest the next day to ensure the arterial wound closed properly. Dr. Goldberg told us that the test results were great! No blockages, heart issues etc. I’m good to go from a cardiac perspective. One more check box covered.
Summary:
So I now have to schedule the next appointment with Dr. Raghu ASAP. I’m calling tomorrow to set up that appointment. I hope that by the time of the appointment that I’ll be in the weight band he demands, that the acid reflux/GERD tests will show that it’s controlled enough to proceed. If that's the case, my hope is that Dr. Raghu will represent me to the transplant committee and I will be added to the transplant list! If your remember, the average wait time at the UW program was 137 days. Maybe by Christmas this could be over?
There will be more blood tests and other preliminary stuff I’m sure, but we’re hoping that I’ve cleared all the major hurdles necessary to be accepted into the program.
The next issue will be posted after this next appointment. Wish me luck and please keep me in your prayers. Thanks for listening.
Bob
Revision 2:
Elaine and Karen pointed out that my midnight editing skills were diminished when I posted the earlier edition. I hope that I've caught most of those and fixed the errors. It's good to know that teachers and retired teachers have your grammatical back! Thanks ladies!! ;-)
Thanks goes out to all of you who have asked for the next installment of my blog. I’ve been holding off posting an update to allow for the latest round of tests to be completed. As of Wednesday, March 16, I completed the last of the major tests.
The time line goes something like this:
February 15: Two tests were performed to check on my acid reflux condition.
Esophageal manometry: Test #1
Esophageal manometry is a test used to measure the function of the lower esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus) and the muscles of the esophagus. A sensor string that looked like a copper colored string of pearls was inserted through my nose into my stomach. Although I like to think that I have a high pain threshold, this hurt like hell! It brought tears to my eyes. It was just as much fun when it was removed.
I was asked to swallow a foul tasting concoction that was intended to numb everything along the swallowing path, while providing a known media from which the pressure measurements were made. This test used to determine how well I swallowed and if the sphincter muscle was functioning correctly. More details are available here: http://my.clevelandcliic.org/services/esophageal_manometry_test/hic_esophageal_manometry_test.aspx
24 hour pH study: Test #2
This test involves another string of sensor that was threaded through my nose into my stomach to measure the acid levels up and down the esophagus. This is done over a 24 hour period and regular measurements are stored via a small datalogger I wore around my neck. The next day I returned to the hospital to have the sensor removed and the data captured and sent to Dr. Raghu. I don’t know the results of this yet. More details of this test are available here: http://my.clevelandclinic.org/services/esophageal_ph_test/hic_24-hour_esophageal_ph_test.aspx
February 16:
The pH transducer was removed. This took about 10 seconds to rank out!
Echo-cardiogram: Test #3
This is the ultrasound examination of the heart and its value functions. This was very enlightening and fun to watch. It’s amazing how far ultrasound imaging has come. It was very easy to see the valves opening and closing. I could see my heart’s contractions and I could see the heart rippling as it pumped blood through the its chambers. The nurse technician was very thorough and the test took nearly an hour. A nice animation of the process is available here: http://www.webmd.com/video/echocardiogram
Although she made it clear that she was not the expert at reading the results, the nurse technician assured me that she saw absolutely no abnormalities! HUUUUU RAHHH!
Meet the cardiologist:
To wrap up the day, I meet with Dr. Goldberg, the cardiologist who read my echo-cardiogram. He was quite the stylish dresser. Very trending multi-colored glasses and a very nice haircut! He was, however, very professional and made me very comfortable discussing my situation with him.
Dr. Goldberg indicated that the echo-cardiogram results was excellent and that if I were a normal patient, he would not see the need for a cardiac catheterization, (also known as an angiogram). But he said that Dr. Raghu and the transplant team are sticklers for detail and will still require we proceed with that test. Dr. Goldberg and his team would perform that test on March 16.
March 7: One more round
Esophagram: Test #4
This is an X-ray test to aid in diagnosing acid reflux (Gastroesophageal Reflux Disease (GERD)) and to establish whether normal functioning of the upper GI exists. Often referred to as the “Upper GI” test, I was asked to swallow a barium mixture that actually tasted like a banana milkshake. Not terribly unpleasant!
The doctors and technicians had me stand on a platform that reminded me of the table in Frankenstein! An automated X-ray machine sweep around you as the table reclined at several different angles while I swallowed what seemed like gallons of the stuff. At one point I was almost standing on my head.
Once it was over, the doctor came out and played a movie of the test showing me swallowing and following the path of the fluid down into the stomach. She also shared good news. Everything was performing famously. Nothing abby normal. (Young Frankenstein reference for you fans of Gene Wilder!)
Next: Meet the Nutritionist
I went into this meeting thinking it was going to be a lecture on how important it was that I lose weight and get myself into the sweet spot of the body mass index (BMI)for my height. Dr. Raghu requires me to have my BMI between 28 and 30, to qualify for the transplant candidate list. My BMI at that time was 31.1, based on my height of 5’ 9.25” and weighing 214 pounds. That means I must weight between 190 to 200 pounds. Not big deal!
FLASH! WEIGHT UPDATE: As of this morning by my scale, weighing my naked body I was at 201 pounds. If I allow for 4 pounds of clothes, that would put me at 205 on their scales. Only 5 pound to go to get in range. I’m back on my 2000calorie diet, managed by my iPhone app LoseIt! Some of you saw the posts on my Facebook page as LoseIt! posted my progress unbeknown to me!
The majority of the meeting was discussing the realities of coping with the side effects of the medications that I’ll have to live with for the rest of my life, AFTER the transplant.
Prednisone, the main drug to suppress rejection, has tons of side effects that range from fluid retention, loss of muscle mass, high blood sugar, elevated cholesterol and more. It’s called a catabolic steroid.
Tacrolimus, Cyclosporine, and Sirolimus are the other drugs that the UW uses regularly for transplant patients. As I blogged earlier, large dosages of anti-immune system suppressants are administered at the onslaught and are normal (these taper down as healing continues). Add in pain meds, antibiotics, statins (Lipitor), calcium, magnesium, vitamin D and you have a hint of the regiment of medications to expect. This will become part of my daily life, for the rest of your life! What is the estimated annual cost of the medications? In today’s dollars, $36,000/year!
March 16:
Cardiac Catheterization: Test #5
As I mentioned earlier, Dr. Goldberg indicated that under normal circumstances, this wouldn’t be required based on the results of the echo-cardiogram, but Dr. Raghu leaves no stone unturned. I suspect that this is part of the reason his program has such high success rates on a relatively new procedure like lung transplants.
Dr. Goldberg explained that there were two standard approaches to this procedure. The older, more established path is making an incision in the groin and inserting
transducers up the femoral artery into the left chamber of the heart and injecting dye that lights up nicely under X-rays.
The less intrusive, newer procedure is to insert a similar transducer in the artery in the arm for left heart testing and another in the artery in the neck. Nice examples with live action pictures can be viewed here: http://en.wikipedia.org/wiki/Cardiac_catheterization
Elaine took the day off to take me, since they heavily drug you into la la land during the procedure. It’s very humbling to put on that drafty hospital gown and lay on a lumpy bed waiting for your time in the procedure room.
We had a terrific nurse name Stacy that conducted the pre-procedure Q&A and helped us stay relaxed. A host of nurses and doctors came in to introduce themselves and explain what was about to happen. A newer Indian doctor, (we missed his name), did a simple squeezing test on my wrist to see if that path could be used for the test.
He discovered that it couldn’t! Damn! Instead of an hour recovery time for the arm/neck procedure, he indicated he felt they’d have to use the traditional groin path. Apparently I have small arteries in my arms, (that explains my cold hands!). They wouldn’t risk the potential damage to the artery that could further reduce the blood flow to my hands. Good decision considering.
When it was time, the IV was placed in my wrist and the happy juice began. I was rolled into the procedure room and of course I had to pee! I walked back out to the bathroom and back and crawled back on the table.
They turned up the juice and the next thing I knew I was back in the recovery room. I had to lie on my back with my legs straight and head down for four hours instead of sitting up and going home in an hour with the arm/neck procedure. Of well, doctor knows best.
It was 8 PM by the time Elaine and I were headed home. I was instructed to stay home and rest the next day to ensure the arterial wound closed properly. Dr. Goldberg told us that the test results were great! No blockages, heart issues etc. I’m good to go from a cardiac perspective. One more check box covered.
Summary:
So I now have to schedule the next appointment with Dr. Raghu ASAP. I’m calling tomorrow to set up that appointment. I hope that by the time of the appointment that I’ll be in the weight band he demands, that the acid reflux/GERD tests will show that it’s controlled enough to proceed. If that's the case, my hope is that Dr. Raghu will represent me to the transplant committee and I will be added to the transplant list! If your remember, the average wait time at the UW program was 137 days. Maybe by Christmas this could be over?
There will be more blood tests and other preliminary stuff I’m sure, but we’re hoping that I’ve cleared all the major hurdles necessary to be accepted into the program.
The next issue will be posted after this next appointment. Wish me luck and please keep me in your prayers. Thanks for listening.
Bob
Friday, January 21, 2011
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!
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!
Wednesday, January 19, 2011
The Prognosis #4
The Prognosis #4
On January 13, Elaine and I meet with Dr. Raghu at the UW Medical Center. Earlier in the day I had a high resolution CAT scan, pulmonary function testing, six minute walking tests where the technician monitors the oxygen saturation levels of my blood with and without oxygen supplementation and blood hemoglobin test. The news wasn’t good on any front or a surprise either for that matter.
The CAT scan showed progression of the disease. The pulmonary function testing showed that my lung function had dropped to ~30% of normal. The walking tests showed that while walking for six minutes without oxygen supplementation that the saturation level in my blood dropped to the high 70s or low 80s percent. (approaching the levels where you pass out) At rest it would hover in the low 90s percent. Normal is high 90s to 100% at rest and high 80s to low 90s percent under stress. Oxygen supplementation bumped the levels to safer range but still below normal.
All this suggested that everything went to “hell in a hand basket” as they say. Dr. Raghu stated the obvious. It was time to focus 100% of my time on my health. He told me that I was now qualified as 100% disabled, it was time to quit working, get into the UW transplant program and follow his instructions completely.
He promised that if I did what he told me, that my prognosis would improve. The survival rates of their transplantation program is greater than 80% after one year and greater than 50% after five. Last year they had 50 lung transplant patients with 60 lungs coming available. (some received one lung, other two) Because I am otherwise pretty healthy, I could expect to be in the high end of the survival numbers.
I was sent home with a ton of papers to read. He asked that I join a FDA sponsored study he was heading, (study to look at whether blood thinner Warfarin, had a positive effect on Idiopathic Pulmonary Fibrosis patients). The first step is to attend a 3 hours class on lung transplantation on January 20, (tomorrow).
I was sent home with hope that I can survive. I was also in shock that if I followed his instructions that I could not continue to work. Not working presents problems with insurance, income and all the other things we take for granted.
Ironically, my employer laid off 2/3 of their sales force, 717 people, on January 4, yours truly included. The severance includes keeping my insurance for 6 months at employee rates. After that, COBRA comes into play. The Catch-22 is how does one pay for COBRA when not working? That’s still unresolved.
So tomorrow’s class begins the official process of “applying” for the lung transplant program. Tons of tests will follow to identify whether I “qualify”. Ongoing blogs will document this process, the challenges I face on how to pay for this without a job, the application process for disability and supplemental social security insurance et. al. It’s going to be interesting and educational for sure. Wish me luck!
Bob
On January 13, Elaine and I meet with Dr. Raghu at the UW Medical Center. Earlier in the day I had a high resolution CAT scan, pulmonary function testing, six minute walking tests where the technician monitors the oxygen saturation levels of my blood with and without oxygen supplementation and blood hemoglobin test. The news wasn’t good on any front or a surprise either for that matter.
The CAT scan showed progression of the disease. The pulmonary function testing showed that my lung function had dropped to ~30% of normal. The walking tests showed that while walking for six minutes without oxygen supplementation that the saturation level in my blood dropped to the high 70s or low 80s percent. (approaching the levels where you pass out) At rest it would hover in the low 90s percent. Normal is high 90s to 100% at rest and high 80s to low 90s percent under stress. Oxygen supplementation bumped the levels to safer range but still below normal.
All this suggested that everything went to “hell in a hand basket” as they say. Dr. Raghu stated the obvious. It was time to focus 100% of my time on my health. He told me that I was now qualified as 100% disabled, it was time to quit working, get into the UW transplant program and follow his instructions completely.
He promised that if I did what he told me, that my prognosis would improve. The survival rates of their transplantation program is greater than 80% after one year and greater than 50% after five. Last year they had 50 lung transplant patients with 60 lungs coming available. (some received one lung, other two) Because I am otherwise pretty healthy, I could expect to be in the high end of the survival numbers.
I was sent home with a ton of papers to read. He asked that I join a FDA sponsored study he was heading, (study to look at whether blood thinner Warfarin, had a positive effect on Idiopathic Pulmonary Fibrosis patients). The first step is to attend a 3 hours class on lung transplantation on January 20, (tomorrow).
I was sent home with hope that I can survive. I was also in shock that if I followed his instructions that I could not continue to work. Not working presents problems with insurance, income and all the other things we take for granted.
Ironically, my employer laid off 2/3 of their sales force, 717 people, on January 4, yours truly included. The severance includes keeping my insurance for 6 months at employee rates. After that, COBRA comes into play. The Catch-22 is how does one pay for COBRA when not working? That’s still unresolved.
So tomorrow’s class begins the official process of “applying” for the lung transplant program. Tons of tests will follow to identify whether I “qualify”. Ongoing blogs will document this process, the challenges I face on how to pay for this without a job, the application process for disability and supplemental social security insurance et. al. It’s going to be interesting and educational for sure. Wish me luck!
Bob
How heartburn turns into lung transplants! #3
Yesterday's blog ended with a hint that GERD or better known as Acid Reflux Disease had a role in my dilemma. I will continue to build the history daily as this blog catches up with today’s events and goes forward.
Throughout my adult life, I had this phenomenon occurring that I didn't pay much attention to, since it was mostly annoying.
Regularly, I find myself inhaling fluid coming up from somewhere. It would make me cough violently and sometimes burn a little in my chest. I had no idea it was a problem and I frequently would tell myself to stop breathing and swallowing at the same time. As it turned out that I was refluxing stomach fluid and inhaling it. Little did I know that over the years each time this occurred, a tiny bit of damage to my lungs was occurring.
Fast forward to 2006:
While my diaphragm was paralyzed by the pinching of my phrenic nerves, the reflux worsened, since my weakened breathing mechanisms couldn't clear my lungs as well. The stomach acid accelerated the damage.
About 1.5 - 2 years after the paralysis of my diaphragm occurred, the nerves began to heal and slowly my diaphragm function began to return. However, I was still very short of breath and pretty confused. I thought that the extra 50 pounds I'd put on the last 10 years probably wasn't helping, so I decided to visit my primary care physician, Dr. Bayles to get checked out. I was determined to lose weight, begin exercising to regain my stamina and feel better.
Dr. Bayles ordered a calcium CAT scan, an experimental procedure to check your heart for deposits and blockages that could cause heart attacks. A cardiac CAT scan for coronary calcium is a non-invasive way of obtaining information about the presence, location and extent of calcified plaque in the coronary arteries—the vessels that supply oxygen-containing blood to the heart muscle. (http://www.radiologyinfo.org/en/info.cfm?pg=ct_calscoring)
There was good news and bad. My heart was in excellent shape. But even the low resolution images had picked up cloudiness in my lungs. Dr. Bayles referred me to the UW Medical Center, pulmonary specialties clinic to have it checked out. For some reason, that didn't click immediately and all I heard was my heart was great! It wasn't until I had made progress on losing weight but the lack of stamina persisted, that I revisited Dr. Bayles. He scolded me for not paying attention and told me to get to the UW ASAP. I listened this time.
Drs. Benditt and Raghu head up the Pulmonary Clinic at the UW Medical Center. Dr. Benditt ordered a test to confirm GERD. A transducer string was inserted in my nose and positioned all the way down into my stomach. The transducer had multiple acid sensors along its length and attached to a small data logger that I wore on my belt for 24 hours. This test confirmed I had GERD.
Simultaneously, a biopsy of one of the damaged lungs was taken and other testing led to the diagnosis of idiopathic pulmonary fibrosis. Pulmonary fibrosis is a serious disease that causes progressive scarring of your lung tissue. The current thinking is that pulmonary fibrosis begins with repeated injury to the tissue within and between the tiny air sacs (alveoli) in your lungs.
In my case the acid reflux was identified as the culprit. The prognosis was grim. In a typical case where the cause is unknown, the patient’s life expectancy was four to five years. (This was in 2008) If the cause is identified and corrected, the patients could live a semi-normal life. I chose to believe the second alternative. The alternative path is lung transplantation. More on that later. (http://www.bing.com/health/article/mayo-126601/Pulmonary-fibrosis?q=idiopathic+pulmonary+fibrosis&qpvt=Idiopathic+Pulmonary+Fibrosis)
I was placed on the generic version of Prilosec (Omeprazole). (http://en.wikipedia.org/wiki/Omeprazole) Over time, this reduced the PH level of my stomach acid but hasn’t fixed the physical problem of the stomach contents coming up and being inhaled. I continued my weight loss and dropped ~40 pounds. This combination provided marked improvement in how I felt for a couple of years.
This all changed about six months ago. The shortness of breath, fatigue and light-headedness returned. This occurred about the same time as the company I worked for began to feel the effects of the down economy.
It was time to head back to the UW Medical Center. Elaine and I met with Dr. Raghu on January 13, after a full workup of testing. The next segment will bring this blog up to present time. Stay tuned as the saga continues.
Your comments and thoughts are invited and appreciated.
Thanks
Bob
Throughout my adult life, I had this phenomenon occurring that I didn't pay much attention to, since it was mostly annoying.
Regularly, I find myself inhaling fluid coming up from somewhere. It would make me cough violently and sometimes burn a little in my chest. I had no idea it was a problem and I frequently would tell myself to stop breathing and swallowing at the same time. As it turned out that I was refluxing stomach fluid and inhaling it. Little did I know that over the years each time this occurred, a tiny bit of damage to my lungs was occurring.
Fast forward to 2006:
While my diaphragm was paralyzed by the pinching of my phrenic nerves, the reflux worsened, since my weakened breathing mechanisms couldn't clear my lungs as well. The stomach acid accelerated the damage.
About 1.5 - 2 years after the paralysis of my diaphragm occurred, the nerves began to heal and slowly my diaphragm function began to return. However, I was still very short of breath and pretty confused. I thought that the extra 50 pounds I'd put on the last 10 years probably wasn't helping, so I decided to visit my primary care physician, Dr. Bayles to get checked out. I was determined to lose weight, begin exercising to regain my stamina and feel better.
Dr. Bayles ordered a calcium CAT scan, an experimental procedure to check your heart for deposits and blockages that could cause heart attacks. A cardiac CAT scan for coronary calcium is a non-invasive way of obtaining information about the presence, location and extent of calcified plaque in the coronary arteries—the vessels that supply oxygen-containing blood to the heart muscle. (http://www.radiologyinfo.org/en/info.cfm?pg=ct_calscoring)
There was good news and bad. My heart was in excellent shape. But even the low resolution images had picked up cloudiness in my lungs. Dr. Bayles referred me to the UW Medical Center, pulmonary specialties clinic to have it checked out. For some reason, that didn't click immediately and all I heard was my heart was great! It wasn't until I had made progress on losing weight but the lack of stamina persisted, that I revisited Dr. Bayles. He scolded me for not paying attention and told me to get to the UW ASAP. I listened this time.
Drs. Benditt and Raghu head up the Pulmonary Clinic at the UW Medical Center. Dr. Benditt ordered a test to confirm GERD. A transducer string was inserted in my nose and positioned all the way down into my stomach. The transducer had multiple acid sensors along its length and attached to a small data logger that I wore on my belt for 24 hours. This test confirmed I had GERD.
Simultaneously, a biopsy of one of the damaged lungs was taken and other testing led to the diagnosis of idiopathic pulmonary fibrosis. Pulmonary fibrosis is a serious disease that causes progressive scarring of your lung tissue. The current thinking is that pulmonary fibrosis begins with repeated injury to the tissue within and between the tiny air sacs (alveoli) in your lungs.
In my case the acid reflux was identified as the culprit. The prognosis was grim. In a typical case where the cause is unknown, the patient’s life expectancy was four to five years. (This was in 2008) If the cause is identified and corrected, the patients could live a semi-normal life. I chose to believe the second alternative. The alternative path is lung transplantation. More on that later. (http://www.bing.com/health/article/mayo-126601/Pulmonary-fibrosis?q=idiopathic+pulmonary+fibrosis&qpvt=Idiopathic+Pulmonary+Fibrosis)
I was placed on the generic version of Prilosec (Omeprazole). (http://en.wikipedia.org/wiki/Omeprazole) Over time, this reduced the PH level of my stomach acid but hasn’t fixed the physical problem of the stomach contents coming up and being inhaled. I continued my weight loss and dropped ~40 pounds. This combination provided marked improvement in how I felt for a couple of years.
This all changed about six months ago. The shortness of breath, fatigue and light-headedness returned. This occurred about the same time as the company I worked for began to feel the effects of the down economy.
It was time to head back to the UW Medical Center. Elaine and I met with Dr. Raghu on January 13, after a full workup of testing. The next segment will bring this blog up to present time. Stay tuned as the saga continues.
Your comments and thoughts are invited and appreciated.
Thanks
Bob
Tuesday, January 18, 2011
How this began #2
This journey began in the fall of 2004 when we were moving my daughter, Jennifer, into her first off campus room at Western Washington University. It was a usual dark and dreary night. We had the Escape full of beds, books and clothes.
I parked the car and got out to go look for the address of a unlit house, when I turned and saw Jen and her friend driving up to tell us we were at the wrong house. I slipped on the wet concrete, twisted my ankle and fell across the bricks lining the sidewalk. As I tried to pick myself up, I realized something was broken. Both my ankle and leg were torn up.
I literally crawled back to the car and ask Robin to take me to the emergency room, then go unpack Jen and come back and get me.
I had broken my right tibia and my ankle had come apart as the ligaments tore. I was put into a boot and instructed to go see my physicians back in Redmond.
On Monday I was referred by my primary care physician to Orthopedic Department at Evergreen Hospital in Kirkland. The department head agreed to do the repair surgery ASAP, but later I was advised he was leaving the hospital and I was referred to another surgeon to go forward with the post surgery follow.
During the surgical recovery, the internal stitches didn't dissolve as expected, poked through the wound and became the super highway for staph germs. To treat the staph infection, the doctors installed a cardiac catheter to allow me to directly inject strong antibiotics into my heart. If I remember this was to improve the distribution of the antibiotics as well as protecting my heart from the staph. A visiting nurse came by weekly to check the catheter-body interface and to replenish my antibiotics. I would go see the "infection" doctor twice a week to check up the status of the infection. It had to be totally gone before they'd remove the catheter.
In parallel, I had a history of bulging discs in my neck that had been treated with a steroid injection directly into the discs. This had relieved the discomfort for a few years, but it resurfaced after my fall. I took a friend's advise and went to a Chiropractor for relief. I was very specific about avoiding twisting my neck and I only wanted massage to reduce the spasms in my neck and shoulders. She must of tuned me out and without warning cracked my neck. I knew immediately that something was wrong. That night I couldn't breath while lying down.
The next day I had the appointment with the infections doctor and told him about the breathing difficulty. He rushed me to the hospital for a CAT Scan. He was worried about a blood clot. When I tried to lie down on the CAT Scan table, my breathing stopped. They admitted me to the hospital again. This was around Christmas of 2004.
It became obvious that Evergreen's pulmonary department had no experience diagnosing an unfamiliar problem like this. They ordered a sleep apnea study, had me prop up the bed to rest and basically couldn't find their butt with both hands. I literally checked myself out and went home. Elaine insisted that I get myself to the University of Washington Medical Center ASAP.
I went to Dr. Josh Benditt the next week. Dr. Benditt immediately discovered my diaphragm was not working at all. The next day I went to a neurologist who pulled up a Boston Medical Journal article describing Phrenic nerve paralysis cause by Chiropractic manipulation. The neck cracking pinched both Phrenic nerves that control the diaphragm. This confirmed Dr. Benditt's diagnosis. (http://en.wikipedia.org/wiki/Phrenic_nerve)
The respiratory therapist at the UW, sent me home with a BiPAP machine. (www.wiseguy.com/what-is-bipap.htm) This is a super version of the machines that are used to treat sleep apnea and control acid reflex. I got the best night's sleep I had had in 60 days! It was a life changing event! The key word here is GERD or Acid Reflux Disease. This will be the topic for the next edition tomorrow... (https://health.google/health/ref/Gastroesophageal+reflux+disease)
I parked the car and got out to go look for the address of a unlit house, when I turned and saw Jen and her friend driving up to tell us we were at the wrong house. I slipped on the wet concrete, twisted my ankle and fell across the bricks lining the sidewalk. As I tried to pick myself up, I realized something was broken. Both my ankle and leg were torn up.
I literally crawled back to the car and ask Robin to take me to the emergency room, then go unpack Jen and come back and get me.
I had broken my right tibia and my ankle had come apart as the ligaments tore. I was put into a boot and instructed to go see my physicians back in Redmond.
On Monday I was referred by my primary care physician to Orthopedic Department at Evergreen Hospital in Kirkland. The department head agreed to do the repair surgery ASAP, but later I was advised he was leaving the hospital and I was referred to another surgeon to go forward with the post surgery follow.
During the surgical recovery, the internal stitches didn't dissolve as expected, poked through the wound and became the super highway for staph germs. To treat the staph infection, the doctors installed a cardiac catheter to allow me to directly inject strong antibiotics into my heart. If I remember this was to improve the distribution of the antibiotics as well as protecting my heart from the staph. A visiting nurse came by weekly to check the catheter-body interface and to replenish my antibiotics. I would go see the "infection" doctor twice a week to check up the status of the infection. It had to be totally gone before they'd remove the catheter.
In parallel, I had a history of bulging discs in my neck that had been treated with a steroid injection directly into the discs. This had relieved the discomfort for a few years, but it resurfaced after my fall. I took a friend's advise and went to a Chiropractor for relief. I was very specific about avoiding twisting my neck and I only wanted massage to reduce the spasms in my neck and shoulders. She must of tuned me out and without warning cracked my neck. I knew immediately that something was wrong. That night I couldn't breath while lying down.
The next day I had the appointment with the infections doctor and told him about the breathing difficulty. He rushed me to the hospital for a CAT Scan. He was worried about a blood clot. When I tried to lie down on the CAT Scan table, my breathing stopped. They admitted me to the hospital again. This was around Christmas of 2004.
It became obvious that Evergreen's pulmonary department had no experience diagnosing an unfamiliar problem like this. They ordered a sleep apnea study, had me prop up the bed to rest and basically couldn't find their butt with both hands. I literally checked myself out and went home. Elaine insisted that I get myself to the University of Washington Medical Center ASAP.
I went to Dr. Josh Benditt the next week. Dr. Benditt immediately discovered my diaphragm was not working at all. The next day I went to a neurologist who pulled up a Boston Medical Journal article describing Phrenic nerve paralysis cause by Chiropractic manipulation. The neck cracking pinched both Phrenic nerves that control the diaphragm. This confirmed Dr. Benditt's diagnosis. (http://en.wikipedia.org/wiki/Phrenic_nerve)
The respiratory therapist at the UW, sent me home with a BiPAP machine. (www.wiseguy.com/what-is-bipap.htm) This is a super version of the machines that are used to treat sleep apnea and control acid reflex. I got the best night's sleep I had had in 60 days! It was a life changing event! The key word here is GERD or Acid Reflux Disease. This will be the topic for the next edition tomorrow... (https://health.google/health/ref/Gastroesophageal+reflux+disease)
Introduction January 18, 2011 #1
Welcome to my first attempt at blogging. Special thanks to Google for making this easy and free!
The purpose of my blog is to review:
The purpose of my blog is to review:
- How this began
- What went wrong
- What I could have done better
- Where I am now
- What the short-term looks like
- What the long-term looks like
- What are my options for treatment
- What's my prognosis
- To document what occurs going forward
- To vent my frustration, rants and raves
- Keep my friends and family informed
- Capture ideas, advise and recommendations from everyone
I hope to keep this light hearted when possible, informative always and a source of hope and positivity for those who face their own personal challenges.
Thanks
Bob
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