Friday - September 16, 2005 I have been inactive for about to a year due to my own family issues, but now it's time for me to make a decision. I've had many times over the past 7 years when my family issues have been overwhelming, and yet I seemed to keep the chapter going, but for some reason or another, this time I just couldn't seem to get re-focused. Was it the birth & emergency surgery of my granddaughter, having to move unexpectedly, my youngest daughter's graduation, my father's battle with cancer, the loss of my job, reuniting with my best friend & helping with her son's battle with cancer (him & my son practically grew up together), and subsequent letting them to move in with us all summer after she lost her job & apartment or my own increasing frequency of Stickler's Syndrome symptoms? Which one is the one that made doing Marfan's work too much; I don't know. I lost touch with National, didn't keep up on the Marfan's Digest, didn't follow-up after Mathew's surgery, and completely missed Jennie's surgery. There is a part of me that says that despite my own issues, it is completely inexcusable that I let things go so badly. There is another part that says "You're only human, and time and time again you asked for help with the chapter work, and except for Laurie, no one stepped up to help out of 300 members." Then I start the self-argument that I should have called National & let Cathie know what was going on, called around on the list & asked for help (despite that fact I have phone numbers for less than 50% of the list), and the counter argument that no one can do everything, and that we all fail sometimes, and it goes on and on. There are some practicalities that do need to be addressed. If I do step down, is there someone willing and able to pick up the duties? The fees for the web site are due in 3 weeks, and I am still out of work, so I have no clue if I can make the entire payment, and I would really hate to see the web page go down. The arrangement has been that I pay 1/2 ($50) & the chapter pays 1/2 ($50) (I use part of the space for my personal pages & about 1/2 for the OCNMF site). Normally I wouldn't mind paying all upfront and let the chapter reimburse me later, but $100 is something we I don't have right now as I am still out of work. If I do pull it from the OCNMF bank account, it will all but wipe out the chapter funds & leave nothing for a mailing in case our awesome researchers at OHSU need to get us together on short notice again. Financial reports have been behind for a long time. There is much work to be done. I have taken steps in case the decision to change leadership is confirmed, such as setting up a new email address that I could relinquish to a new president if needed. All of the mailing list is computerized, although it does need an update as well. I have done some more in depth filing of the paperwork. Hopefully this will make a transition easier if needed. So now I come to you - our members - and ask, where do we go from here? If you want to send me a scathing email to let me know how displeased you are, I totally understand. Daniel & I miss meeting other Marf's and still want to participate. I'm willing to try and get things restarted, or step down, which ever is best, but I want to do what's best for everyone, so I will leave it up to you. I await your input. 2000 Entries from Daniel's Heart Surgery *********************************************************************************************************************************************************************************** Saturday - December 30, 2000 - Exhaustion finally caught up with me so I did not even get up to the hospital 'till late Sat. They have cut down on Daniel's pain meds in hopes of keeping him more awake to cough when he needs to. He has been very good about doing his breathing exercises on his own. They removed an IV lead and the catheter (Yea!). He is having a hard time finding a comfortable position so he is tossing and turning alot. He is still having some drainage from the chest, so they are not quite ready to pull the drain tube yet. As soon as he can get off the IV blood pressure meds and on to just oral blood pressure meds he can probably leave ICU for the regular cardio unit. *********************************************************************************************************************************************************************************** Friday - December 29, 2000 - Daniel is still very sedated, but making steady progress. They took him off the breathing tube today (he had been breathing on his own for quite a while) as well as taking out the NG tube. They managed to get him up in a chair for about an hour. He was also able to take some meds with water by mouth. They are still having to strickly control his blood pressure, but still have not quite weaned him off the IV meds yet. He is having a hard time coughing so pnuemonia is still a big concern. Overall we are pretty happy with his progress so far. Got info from National on Have-a-Heart 2001 Campaign. I will try to post it as soon as possible. *********************************************************************************************************************************************************************************** Thursday - December 28, 2000 - Daniel's surgery was a bit late starting, as it took a bit longer getting him prepped than expected. They called us every 2 hours with updates, and we had many family and freinds stop by and spend time with us. At 2 hours in they had finished the blocked artery bypass, and was putting the mechanical valve in. At 4 hours they were putting in the aortic arch. At 6 hours they were getting ready to take him off the heart / lung machine. After about 8 hours they came out and informed us his surgery was sucessful. After he came back from recovery they were a bit concerned about the bleeding, but it settled down pretty quickly. Due to the hypertension, they are really watching his B/P closely and adjusting the heart meds accodingly. They hope he will be able to go off the breathing machine tomorow. For now he is sedated and resting in critical but stable condition. *********************************************************************************************************************************************************************************** Tuesday - December 26, 2000 - Daniel went in for his angiogram today. Since there is a strong family history of coronary artery heart disease in the family (this is not Marfan's related) they wanted to double check for any blocked arteries in case they have to bypass them while they are fixing his aorta. Unfortuately even a pretty good diet, excellent cholesteral levels and life long exercise did not twart heredity. They did find one artery about 70% blocked and they will have to bypass it before doing the actual aortic repair. *********************************************************************************************************************************************************************************** Saturday - December 16, 2000 - Officially notified OCNMF members. See copy of letter on the Chapter News page. Started putting together personal paperwork such as Advanced Directives and other important documents. Not much else to do besides paperwork, rest, and get ready for the holiday celebrations. *********************************************************************************************************************************************************************************** Thursday - December 14, 2000 - Telephone interview with Social Security for disability. *********************************************************************************************************************************************************************************** Wednesday - December 13, 2000 - Notified Daniel's boss that he would not be back to work indefinatly. *********************************************************************************************************************************************************************************** Tuesday - December 12, 2000 - Late Entry - Notified all Marfan mailing lists of Daniel's surgery, extended family, as well as several family friends. *********************************************************************************************************************************************************************************** Tuesday - December 12, 2000 - Since I am home sick, I figured I'd get this updated. For those who are not aware, the Interim Treasurer Daniel Moore, (who is also my husband) will be going in to surgery on December 28, 2000 for a replacement of the aortic valve, accending aorta, and aortic arch. For an illustration that is very close to what they will doing, click on the following links: This was quite unexpected, as his dialation had been a slow progression over years, with his last echo less than 2 months ago showing some change, but not that much. As hard as this will be, I am hoping to use this as learning experience. For those who may face this somewhere down the road, perhaps you will learn from whatever mistakes we make, and draw strength that you are not alone. For those who have been here ahead of us, please feel free to give us any hints you can, as we will need all we can get. And of course, your well wishes are always appreciated. Daniel's surgery will be at OHSU (Oregon Health Sciences University) Hospital, performed by Dr. Irving Shen, formally from the University of Colorado School of Medicine. *********************************************************************************************************************************************************************************** On a lighter note, I have completed my computer restore, and are able to get back to work. The Oregon Marfan survey is 85% complete. We are hoping to have it out in the next 30 - 45 days. |
This page will an on-going journel as to the inside working of the chapter's leadership as we strive to fulfill our chapter's Mission Statement. New entries will be posted as time permits, feel free to stop in here frequently. |
This page was last updated on: September 16, 2005
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since December 12, 2000 |
Friday - September 16, 2005 I have been inactive for about to a year due to my own family issues, but now it's time for me to make a decision. I've had many times over the past 7 years when my family issues have been overwhelming, and yet I seemed to keep the chapter going, but for some reason or another, this time I just couldn't seem to get re-focused. Was it the birth & emergency surgery of my granddaughter, having to move unexpectedly, my youngest daughter's graduation, my father's battle with cancer, the loss of my job, reuniting with my best friend & helping with her son's battle with cancer (him & my son practically grew up together), and subsequent letting them to move in with us all summer after she lost her job & apartment or my own increasing frequency of Stickler's Syndrome symptoms? Which one is the one that made doing Marfan's work too much; I don't know. I lost touch with National, didn't keep up on the Marfan's Digest, didn't follow-up after Mathew's surgery, and completely missed Jennie's surgery. There is a part of me that says that despite my own issues, it is completely inexcusable that I let things go so badly. There is another part that says "You're only human, and time and time again you asked for help with the chapter work, and except for Laurie, no one stepped up to help out of 300 members." Then I start the self-argument that I should have called National & let Cathie know what was going on, called around on the list & asked for help (despite that fact I have phone numbers for less than 50% of the list), and the counter argument that no one can do everything, and that we all fail sometimes, and it goes on and on. There are some practicalities that do need to be addressed. If I do step down, is there someone willing and able to pick up the duties? The fees for the web site are due in 3 weeks, and I am still out of work, so I have no clue if I can make the entire payment, and I would really hate to see the web page go down. The arrangement has been that I pay 1/2 ($50) & the chapter pays 1/2 ($50) (I use part of the space for my personal pages & about 1/2 for the OCNMF site). Normally I wouldn't mind paying all upfront and let the chapter reimburse me later, but $100 is something we I don't have right now as I am still out of work. If I do pull it from the OCNMF bank account, it will all but wipe out the chapter funds & leave nothing for a mailing in case our awesome researchers at OHSU need to get us together on short notice again. Financial reports have been behind for a long time. There is much work to be done. I have taken steps in case the decision to change leadership is confirmed, such as setting up a new email address that I could relinquish to a new president if needed. All of the mailing list is computerized, although it does need an update as well. I have done some more in depth filing of the paperwork. Hopefully this will make a transition easier if needed. So now I come to you - our members - and ask, where do we go from here? If you want to send me a scathing email to let me know how displeased you are, I totally understand. Daniel & I miss meeting other Marf's and still want to participate. I'm willing to try and get things restarted, or step down, which ever is best, but I want to do what's best for everyone, so I will leave it up to you. I await your input. 2000 Entries from Daniel's Heart Surgery *********************************************************************************************************************************************************************************** Saturday - December 30, 2000 - Exhaustion finally caught up with me so I did not even get up to the hospital 'till late Sat. They have cut down on Daniel's pain meds in hopes of keeping him more awake to cough when he needs to. He has been very good about doing his breathing exercises on his own. They removed an IV lead and the catheter (Yea!). He is having a hard time finding a comfortable position so he is tossing and turning alot. He is still having some drainage from the chest, so they are not quite ready to pull the drain tube yet. As soon as he can get off the IV blood pressure meds and on to just oral blood pressure meds he can probably leave ICU for the regular cardio unit. *********************************************************************************************************************************************************************************** Friday - December 29, 2000 - Daniel is still very sedated, but making steady progress. They took him off the breathing tube today (he had been breathing on his own for quite a while) as well as taking out the NG tube. They managed to get him up in a chair for about an hour. He was also able to take some meds with water by mouth. They are still having to strickly control his blood pressure, but still have not quite weaned him off the IV meds yet. He is having a hard time coughing so pnuemonia is still a big concern. Overall we are pretty happy with his progress so far. Got info from National on Have-a-Heart 2001 Campaign. I will try to post it as soon as possible. *********************************************************************************************************************************************************************************** Thursday - December 28, 2000 - Daniel's surgery was a bit late starting, as it took a bit longer getting him prepped than expected. They called us every 2 hours with updates, and we had many family and freinds stop by and spend time with us. At 2 hours in they had finished the blocked artery bypass, and was putting the mechanical valve in. At 4 hours they were putting in the aortic arch. At 6 hours they were getting ready to take him off the heart / lung machine. After about 8 hours they came out and informed us his surgery was sucessful. After he came back from recovery they were a bit concerned about the bleeding, but it settled down pretty quickly. Due to the hypertension, they are really watching his B/P closely and adjusting the heart meds accodingly. They hope he will be able to go off the breathing machine tomorow. For now he is sedated and resting in critical but stable condition. *********************************************************************************************************************************************************************************** Tuesday - December 26, 2000 - Daniel went in for his angiogram today. Since there is a strong family history of coronary artery heart disease in the family (this is not Marfan's related) they wanted to double check for any blocked arteries in case they have to bypass them while they are fixing his aorta. Unfortuately even a pretty good diet, excellent cholesteral levels and life long exercise did not twart heredity. They did find one artery about 70% blocked and they will have to bypass it before doing the actual aortic repair. *********************************************************************************************************************************************************************************** Saturday - December 16, 2000 - Officially notified OCNMF members. See copy of letter on the Chapter News page. Started putting together personal paperwork such as Advanced Directives and other important documents. Not much else to do besides paperwork, rest, and get ready for the holiday celebrations. *********************************************************************************************************************************************************************************** Thursday - December 14, 2000 - Telephone interview with Social Security for disability. *********************************************************************************************************************************************************************************** Wednesday - December 13, 2000 - Notified Daniel's boss that he would not be back to work indefinatly. *********************************************************************************************************************************************************************************** Tuesday - December 12, 2000 - Late Entry - Notified all Marfan mailing lists of Daniel's surgery, extended family, as well as several family friends. *********************************************************************************************************************************************************************************** Tuesday - December 12, 2000 - Since I am home sick, I figured I'd get this updated. For those who are not aware, the Interim Treasurer Daniel Moore, (who is also my husband) will be going in to surgery on December 28, 2000 for a replacement of the aortic valve, accending aorta, and aortic arch. For an illustration that is very close to what they will doing, click on the following links: This was quite unexpected, as his dialation had been a slow progression over years, with his last echo less than 2 months ago showing some change, but not that much. As hard as this will be, I am hoping to use this as learning experience. For those who may face this somewhere down the road, perhaps you will learn from whatever mistakes we make, and draw strength that you are not alone. For those who have been here ahead of us, please feel free to give us any hints you can, as we will need all we can get. And of course, your well wishes are always appreciated. Daniel's surgery will be at OHSU (Oregon Health Sciences University) Hospital, performed by Dr. Irving Shen, formally from the University of Colorado School of Medicine. *********************************************************************************************************************************************************************************** On a lighter note, I have completed my computer restore, and are able to get back to work. The Oregon Marfan survey is 85% complete. We are hoping to have it out in the next 30 - 45 days. |
President's Journel |
