Always looking for solutions.
Since the first day that we found out that I might have Scleroderma, Robbi and I have looked at every treatment that we have heard about. When you look for ideas - boy can you find them. Then, once you go public with your diagnosis, you are inundated with information from all over the world.
We heard about treatments with herbal medications, acupuncture, meditation, new super drugs, experimental therapies, and traditional ones. This research that we did was how we uncovered stem cell transplants. It i also how we verified all of the traditional methods that we have used. We have never accepted anything, at face value - even when it was proposed by our medical team and their referrals.
I tried a couple of treatments that fell off the active list quickly - acupuncture and herbal meds, are a couple of them. Some of the ones that I continue to use include therapeutic massage, physical therapy, and traditional medications.
About 1 1/2 years ago, when my lung function deteriorated at a faster rate, I had conversations with my doctors. I was, then, going to BU Medical Center. I was scared, and asked my Rheumy to help me prepare myself for the near future. I wanted to gather information about my options for treatment. He outlined that my options were, as he saw them:
1) maintain the process that we were using till then - wait and see what happens next
2) begin a new round of chemo, using Cellcept
3) if I don't respond positively to chemo, and continue to deteriorate, then we would talk about a lung transplant.
I asked about stem cell transplants, (which I had read about and knew there was a medical trial going on). He said that I was not qualified for the medical trial - because I had already taken chemo treatments.
So, faced with my current condition, I asked to get onto the Cellcept, ASAP. He agreed.
The next meeting I had with my Pulmonologist, I raised the question of lung transplants. Robbi was with me that day, (about 2 months after the previous meeting). What we heard was not encouraging... Extreme surgical conditions, very long recovery, very high risk of rejection, poor quality of life, limited change of extending life... Case closed.
Fast forward to November 2007:
When I returned home from the hospital and we weren't sure if I was truly dying (now), we talked to my PCP about lung transplants again. I was in contact with a person who had a double transplant in June and was doing extremely well! According to his son, he was recovering so well that he was working every day as the owner manager of a construction company. Remarkable - to say the least. My PCP suggested that we talk to my new Pulmonologist, and we did. She said that we should get all the info we could to make a reasonable decision. She set up a meeting for us at the Brigham and Woman's Lung Transplantation Center.
It needs to be said that neither Gordon, (PCP), nor Kimberly (Pulmon.) proposed that a transplant is the right way to proceed. As a matter of fact, both of them remained totally neutral in all conversations. Robbi was never convinced that this research would yield a positive outcome. She went trough with this meeting to allow me to gather all the info I needed to make a sound decision. So we packed up the oxygen tanks (4 of them, in case of delays), and headed into Boston early today. [I expect that many of you may remember that Robbi is NOT a morning sunshine flower... Yeah - still not! Oh, the things she does for me.]
We got to the appointment 1/2 hr. late, and then had to wait 1 1/2 hr more before our doctor came in... (I was ready to walk, but Robbi, again, kept me in the NOW.) Dr. McKee began and it didn't take long for the reality to land hard.
Firstly - It is most unlikely that I would ever qualify for a transplant. The first qualifying tests would need to be a complete gastrointestinal workup. Based on my GI history, which includes GERD (look it up), and daily vomit sessions, I would present as a patient that offers the lowest degree of success. Even if I were to pass that first qualifier, there are several other huddles that the transplant team would have to face:
a) Whereas transplants typically result in several acute rejections, and that Scleroderma patients don't heal well, the chances of a complete recovery is severely jeopardized.
b) Diffuse Scleroderma patients (as I am) have thickened skin inside their bodies, as well as outside. This could mean that when the transplant doctors attempt to attach the new lungs, that they may be sewing them onto skin that is tougher to manipulate than it should be. Again, such hardened skin will not join well with the new skin.
c) Scleroderma is such a varied disease that the doctors can not possible know what to expect before they open me up - and then it's too late to stop the process. Yeah, they can stop the operation. The issue becomes - what did they find that makes them want to stop? And what was already cut that still needs to heal?
OH YEAH - Case Closed!
The important benefit for having gone through this exercise is that we now have the facts. We know that my disease is going to progress... and we know what the progression is likely to involve... we know what lung transplantation involves... and we know when the window of opportunity (for a transplant) closes. With this info, we are empowered to make choices that will be best for each of us, in our family.
It doesn't get better than that...
We heard about treatments with herbal medications, acupuncture, meditation, new super drugs, experimental therapies, and traditional ones. This research that we did was how we uncovered stem cell transplants. It i also how we verified all of the traditional methods that we have used. We have never accepted anything, at face value - even when it was proposed by our medical team and their referrals.
I tried a couple of treatments that fell off the active list quickly - acupuncture and herbal meds, are a couple of them. Some of the ones that I continue to use include therapeutic massage, physical therapy, and traditional medications.
About 1 1/2 years ago, when my lung function deteriorated at a faster rate, I had conversations with my doctors. I was, then, going to BU Medical Center. I was scared, and asked my Rheumy to help me prepare myself for the near future. I wanted to gather information about my options for treatment. He outlined that my options were, as he saw them:
1) maintain the process that we were using till then - wait and see what happens next
2) begin a new round of chemo, using Cellcept
3) if I don't respond positively to chemo, and continue to deteriorate, then we would talk about a lung transplant.
I asked about stem cell transplants, (which I had read about and knew there was a medical trial going on). He said that I was not qualified for the medical trial - because I had already taken chemo treatments.
So, faced with my current condition, I asked to get onto the Cellcept, ASAP. He agreed.
The next meeting I had with my Pulmonologist, I raised the question of lung transplants. Robbi was with me that day, (about 2 months after the previous meeting). What we heard was not encouraging... Extreme surgical conditions, very long recovery, very high risk of rejection, poor quality of life, limited change of extending life... Case closed.
Fast forward to November 2007:
When I returned home from the hospital and we weren't sure if I was truly dying (now), we talked to my PCP about lung transplants again. I was in contact with a person who had a double transplant in June and was doing extremely well! According to his son, he was recovering so well that he was working every day as the owner manager of a construction company. Remarkable - to say the least. My PCP suggested that we talk to my new Pulmonologist, and we did. She said that we should get all the info we could to make a reasonable decision. She set up a meeting for us at the Brigham and Woman's Lung Transplantation Center.
It needs to be said that neither Gordon, (PCP), nor Kimberly (Pulmon.) proposed that a transplant is the right way to proceed. As a matter of fact, both of them remained totally neutral in all conversations. Robbi was never convinced that this research would yield a positive outcome. She went trough with this meeting to allow me to gather all the info I needed to make a sound decision. So we packed up the oxygen tanks (4 of them, in case of delays), and headed into Boston early today. [I expect that many of you may remember that Robbi is NOT a morning sunshine flower... Yeah - still not! Oh, the things she does for me.]
We got to the appointment 1/2 hr. late, and then had to wait 1 1/2 hr more before our doctor came in... (I was ready to walk, but Robbi, again, kept me in the NOW.) Dr. McKee began and it didn't take long for the reality to land hard.
Firstly - It is most unlikely that I would ever qualify for a transplant. The first qualifying tests would need to be a complete gastrointestinal workup. Based on my GI history, which includes GERD (look it up), and daily vomit sessions, I would present as a patient that offers the lowest degree of success. Even if I were to pass that first qualifier, there are several other huddles that the transplant team would have to face:
a) Whereas transplants typically result in several acute rejections, and that Scleroderma patients don't heal well, the chances of a complete recovery is severely jeopardized.
b) Diffuse Scleroderma patients (as I am) have thickened skin inside their bodies, as well as outside. This could mean that when the transplant doctors attempt to attach the new lungs, that they may be sewing them onto skin that is tougher to manipulate than it should be. Again, such hardened skin will not join well with the new skin.
c) Scleroderma is such a varied disease that the doctors can not possible know what to expect before they open me up - and then it's too late to stop the process. Yeah, they can stop the operation. The issue becomes - what did they find that makes them want to stop? And what was already cut that still needs to heal?
OH YEAH - Case Closed!
The important benefit for having gone through this exercise is that we now have the facts. We know that my disease is going to progress... and we know what the progression is likely to involve... we know what lung transplantation involves... and we know when the window of opportunity (for a transplant) closes. With this info, we are empowered to make choices that will be best for each of us, in our family.
It doesn't get better than that...
posted by DesktopDavid at 8:46 AM
2 comments
