Welcome to Duke Lung Transplant Friends
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Copyright© 2007 All Rights Reserved
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Although I am not very good at writing, if even one person gets something of value from the story of my ordeal from the onset of a debilitating lung condition through to a new opportunity at life through a double lung transplant then it will have been worth the effort. So below is a somewhat shortened but accurate account of a macabre adventure that I would not wish on my worst enemy.
My struggle all started some time about 2003. At this time, my condition started mildly and even I was not aware of what a tumultuous ordeal for which I was surely headed. At first, I would have trouble breathing. Often this would be accompanied by what I would call an allergic reaction, the result of which was my skin turning fire red allover.
During this early time, I was employed as a worker by a quite famous automobile manufacturer at a nearby plant. In this capacity, I painted new cars that required touch up (And yes, new cars sometimes require touch up due to a variety of reasons.) cars at a automotive plant. My breathing problems were exacerbated by the job assignment as I was not allowed to use a mask during the times I was actually painting. I really loved the job and did not mind the painting. Unfortunately, it was crystal clear to me that the painting and my condition were at odds. Painting was an ordeal. As a result, I had many conflicts with management and their lackey doctors. I think they did not appreciate the difficultly I was having; maybe even thinking I was faking. And, of course, they took no responsibility for my conditions or the environment in which I worked.
I had no recourse but to obtain my own personal medical care. My doctor began by performing or requesting others to perform several batteries of tests. For one critical test, I went to the University of Georgia (UGA) in Augusta. There they performed a lung biopsy, a primary result of which was that it showed that I suffered from pulmonary fibrosis, an incurable disease.
As a result of this, under doctor’s orders, I was no longer allowed to work. At first the condition was still not totally overwhelming and because I no longer had to do painting, it was tolerable. Gradually my condition worsened and I eventually had to have supplemental oxygen in order to function at all. Unfortunately it got worse yet and I had to use two oxygen concentrators at the same time! Breathing was extremely difficult and I could not even lie down. Trips to doctors and hospitals were an almost constant part of an annoying, miserable way of life.
Time went on and on the day after Thanksgiving of 2006 I went to a hospital in Greenwood, South Carolina, not very far from my home in Greenwood. This visit was my third and what I considered as my final time. I had known for quite some time that my only possibility at survival was a lung transplant and my wife and I had been trying to work with my Doctor to complete and transmit the necessary paperwork for a transplant request to Duke University Hospital.
Shockingly, during one of my doctor’s visits to my hospital room, he confirmed to my wife what we both suspected of his opinion. This was that I was very unlikely (read as not) to qualify for a lung transplant. Incredibly, he delivered this message in one of the most matter of fact manners you could imagine. With this opinion spoken so very bluntly and with absolutely no shred of optimism, it became instantly clear why he had seemed to be slow to complete the necessary paperwork for Duke. I guess he had never read one of the many books like, The Power of Positive Thinking, or anything of this like.
What followed is almost stranger than fiction. My wife and I conspired to take action. And take action we did! Our plan was to leave the hospital and drive to Duke University (over 350 miles away), storing the huge number of oxygen bottles in my truck and hoping we could make it up to Duke in Durham, North Carolina. Kind of a medical Bonnie and Clyde plan but any plan is better than no plan at all. I was going to get to Duke or die trying. After all, what did I have to lose?
On February 13, 2007 we left the hospital, against all recommendations of course, and went home. We arranged with a medical supply company to supply us with the needed oxygen. This was a lot of oxygen, since I was using 30 liters by then. The lady owner / manager of the company supplying the oxygen must have been sent to us by God because she arranged for an ambulance to transport me and my wife to Duke. Now we had a witting accomplice in this scheme.
The newfound accomplice not only got on board quick with our plan but was highly motivated because we were on our way to Duke the very next morning, Valentine’s Day. We left at five o'clock in the morning and in a not so short 4 or 5 hours, we appeared at Duke’s emergency entrance, unannounced and with no prior knowledge on Duke’s part. Remember, the paperwork had not been completed in a timely manner and Duke had not acted formally on the request.
After an unconventional admittance to the hospital (we practically broke in), the head of their pulmonary department, Doctor Steele and his team performed a preliminary examination and raked us over the coals about how sick I was and how they felt that I had been too sick to travel to Duke. My wife responded to the effect that we had neither participated in that evaluation nor accepted it. We felt like interlopers, persona non gratis, as we received some very hard glares. Yes, low probability of success, but we were there!
The following Monday they began their series of testing. Considering my condition, health wise I was very weak but not clearly unqualified for a lung transplant, although there was an artery that was found to have some shrinkage. At the end of a long week of testing, they were still undecided about whether or not I should get a transplant. I do not envy their task of making such decisions but it is a decision they must make. At their invitation, I stayed for another stressful week in which I had to prove to them that I was able to walk and was strong enough for the transplant surgery.
A lot was on the line as there were no other alternatives, so I used every ounce of mettle and determination to demonstrate what little strength I had. It must have worked because they finally said that they were going to activate me on the list. It came as a shock, but Doctor Steele said, surgery needed to happen right away. Right he was, because just twelve hours later I got my call. Doctor's had been dispatched to inspect the donor lungs and, since all had gone well, they prepared me for surgery. Please know that this is not the same as my being prepared for surgery.
So, they wheeled me into surgery. All this time I just was unable to get enough oxygen. After a quick examination, it was determined that I needed to have heart surgery as well! My only response, not so well reasoned, as all reason had left me by now, was: “Do what?!!!” Although I was not awake for most of it, things started happening fast, if you can call a thirteen hour set of procedures fast. The operations completed, the primary surgeon, Doctor Shu S. Lin was able to tell my wife that I had come through ok and she should get some rest so she could be awake when I awakened. Done at last! Ha! You really did not think so, did you?
She had just gotten to the hotel, taken a quick shower and got into bed when Duke called her and said there were complications. I began to have abnormal swelling and needed to go back into surgery. They re-opened a great deal of the large clamshell incision to allow for the swelling and instead of re-suturing, covered the significant area with gauze. If this were not enough, my new lungs evidently needed a little coaxing, so I was put on an incredible heart lung device called an ECMO machine. The abbreviation means Extra-Corporeal (outside the body) Membrane Oxygenation.
This machine oxygenated and pumped my blood and saved my life through the able hands of Duke’s staff. During the three weeks I was on this machine I was purposely left in a drug induced coma. Even though the machine is and was a lifesaver, many that go on it do not survive. But survive I did, waking up to a “drop foot” on my left side and neuropathy in both legs and feet. Not a lot of fun, but you know what they say, “Every day above ground is a good one!”
That’s pretty much a shortened version of my story and I can say that, even though it was quite an ordeal, I am grateful to Duke and thankful to God to still be here.
My struggle all started some time about 2003. At this time, my condition started mildly and even I was not aware of what a tumultuous ordeal for which I was surely headed. At first, I would have trouble breathing. Often this would be accompanied by what I would call an allergic reaction, the result of which was my skin turning fire red allover.
During this early time, I was employed as a worker by a quite famous automobile manufacturer at a nearby plant. In this capacity, I painted new cars that required touch up (And yes, new cars sometimes require touch up due to a variety of reasons.) cars at a automotive plant. My breathing problems were exacerbated by the job assignment as I was not allowed to use a mask during the times I was actually painting. I really loved the job and did not mind the painting. Unfortunately, it was crystal clear to me that the painting and my condition were at odds. Painting was an ordeal. As a result, I had many conflicts with management and their lackey doctors. I think they did not appreciate the difficultly I was having; maybe even thinking I was faking. And, of course, they took no responsibility for my conditions or the environment in which I worked.
I had no recourse but to obtain my own personal medical care. My doctor began by performing or requesting others to perform several batteries of tests. For one critical test, I went to the University of Georgia (UGA) in Augusta. There they performed a lung biopsy, a primary result of which was that it showed that I suffered from pulmonary fibrosis, an incurable disease.
As a result of this, under doctor’s orders, I was no longer allowed to work. At first the condition was still not totally overwhelming and because I no longer had to do painting, it was tolerable. Gradually my condition worsened and I eventually had to have supplemental oxygen in order to function at all. Unfortunately it got worse yet and I had to use two oxygen concentrators at the same time! Breathing was extremely difficult and I could not even lie down. Trips to doctors and hospitals were an almost constant part of an annoying, miserable way of life.
Time went on and on the day after Thanksgiving of 2006 I went to a hospital in Greenwood, South Carolina, not very far from my home in Greenwood. This visit was my third and what I considered as my final time. I had known for quite some time that my only possibility at survival was a lung transplant and my wife and I had been trying to work with my Doctor to complete and transmit the necessary paperwork for a transplant request to Duke University Hospital.
Shockingly, during one of my doctor’s visits to my hospital room, he confirmed to my wife what we both suspected of his opinion. This was that I was very unlikely (read as not) to qualify for a lung transplant. Incredibly, he delivered this message in one of the most matter of fact manners you could imagine. With this opinion spoken so very bluntly and with absolutely no shred of optimism, it became instantly clear why he had seemed to be slow to complete the necessary paperwork for Duke. I guess he had never read one of the many books like, The Power of Positive Thinking, or anything of this like.
What followed is almost stranger than fiction. My wife and I conspired to take action. And take action we did! Our plan was to leave the hospital and drive to Duke University (over 350 miles away), storing the huge number of oxygen bottles in my truck and hoping we could make it up to Duke in Durham, North Carolina. Kind of a medical Bonnie and Clyde plan but any plan is better than no plan at all. I was going to get to Duke or die trying. After all, what did I have to lose?
On February 13, 2007 we left the hospital, against all recommendations of course, and went home. We arranged with a medical supply company to supply us with the needed oxygen. This was a lot of oxygen, since I was using 30 liters by then. The lady owner / manager of the company supplying the oxygen must have been sent to us by God because she arranged for an ambulance to transport me and my wife to Duke. Now we had a witting accomplice in this scheme.
The newfound accomplice not only got on board quick with our plan but was highly motivated because we were on our way to Duke the very next morning, Valentine’s Day. We left at five o'clock in the morning and in a not so short 4 or 5 hours, we appeared at Duke’s emergency entrance, unannounced and with no prior knowledge on Duke’s part. Remember, the paperwork had not been completed in a timely manner and Duke had not acted formally on the request.
After an unconventional admittance to the hospital (we practically broke in), the head of their pulmonary department, Doctor Steele and his team performed a preliminary examination and raked us over the coals about how sick I was and how they felt that I had been too sick to travel to Duke. My wife responded to the effect that we had neither participated in that evaluation nor accepted it. We felt like interlopers, persona non gratis, as we received some very hard glares. Yes, low probability of success, but we were there!
The following Monday they began their series of testing. Considering my condition, health wise I was very weak but not clearly unqualified for a lung transplant, although there was an artery that was found to have some shrinkage. At the end of a long week of testing, they were still undecided about whether or not I should get a transplant. I do not envy their task of making such decisions but it is a decision they must make. At their invitation, I stayed for another stressful week in which I had to prove to them that I was able to walk and was strong enough for the transplant surgery.
A lot was on the line as there were no other alternatives, so I used every ounce of mettle and determination to demonstrate what little strength I had. It must have worked because they finally said that they were going to activate me on the list. It came as a shock, but Doctor Steele said, surgery needed to happen right away. Right he was, because just twelve hours later I got my call. Doctor's had been dispatched to inspect the donor lungs and, since all had gone well, they prepared me for surgery. Please know that this is not the same as my being prepared for surgery.
So, they wheeled me into surgery. All this time I just was unable to get enough oxygen. After a quick examination, it was determined that I needed to have heart surgery as well! My only response, not so well reasoned, as all reason had left me by now, was: “Do what?!!!” Although I was not awake for most of it, things started happening fast, if you can call a thirteen hour set of procedures fast. The operations completed, the primary surgeon, Doctor Shu S. Lin was able to tell my wife that I had come through ok and she should get some rest so she could be awake when I awakened. Done at last! Ha! You really did not think so, did you?
She had just gotten to the hotel, taken a quick shower and got into bed when Duke called her and said there were complications. I began to have abnormal swelling and needed to go back into surgery. They re-opened a great deal of the large clamshell incision to allow for the swelling and instead of re-suturing, covered the significant area with gauze. If this were not enough, my new lungs evidently needed a little coaxing, so I was put on an incredible heart lung device called an ECMO machine. The abbreviation means Extra-Corporeal (outside the body) Membrane Oxygenation.
This machine oxygenated and pumped my blood and saved my life through the able hands of Duke’s staff. During the three weeks I was on this machine I was purposely left in a drug induced coma. Even though the machine is and was a lifesaver, many that go on it do not survive. But survive I did, waking up to a “drop foot” on my left side and neuropathy in both legs and feet. Not a lot of fun, but you know what they say, “Every day above ground is a good one!”
That’s pretty much a shortened version of my story and I can say that, even though it was quite an ordeal, I am grateful to Duke and thankful to God to still be here.
Duke Lung Transplant Friends Stories
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By Donnie Ashley