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
1 comment:
Thanks for continuing to tell your story. I enjoy reading all the details but am also reminded of your lung transplant process. My thoughts and prayers are with you and I look forward to hearing more after your appointments...
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