@daleem1013
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David Morgan posted a new activity comment 5 months, 1 week ago
I am however learning, for me, that balancing my research requires balance ( emotionally, spiritually, so I don’t get lost in a rabbit hole of nothing but this but also living everyday life. Trying to at best without getting too lost in the forest for the trees. It’s a tight rope of support, education, emotions and keeping joy. I hope to find a…[Read more]
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David Morgan posted a new activity comment 5 months, 1 week ago
Thank you Christie, as I hear mire from my next appointment I will share more and also research the columns of yours and Sam’s as you’ve suggested. I appreciate your time and consideration.
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David Morgan posted a new activity comment 5 months, 1 week ago
Thanks for the encouragement. The gauntlet of esophagrams, more HRCTs ECHOs, etc.. continue as my chief pulmonologist has informed me that they are listing me for an LTx so I’m certain that I will have plenty of more questions as this whole ordeal seems like a blur at times and yet I feel enthusiastic to see all the why’s and how’s I’m supposed to…[Read more]
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There’s a bunch of resources for approaching and navigating the transplant process on our site. Myself and Sam Kirton write columns on the subject–he as a patient and me as a caregiver. Feel free to reach out anytime if you need support. It can be pretty overwhelming.
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Thank you Christie, as I hear mire from my next appointment I will share more and also research the columns of yours and Sam’s as you’ve suggested. I appreciate your time and consideration.
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I am however learning, for me, that balancing my research requires balance ( emotionally, spiritually, so I don’t get lost in a rabbit hole of nothing but this but also living everyday life. Trying to at best without getting too lost in the forest for the trees. It’s a tight rope of support, education, emotions and keeping joy. I hope to find a…[Read more]
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Absolutely understand that. I didn’t do any research when my mom was diagnosed. I just wanted to know what she and her doctors had to say and nothing else for the internet because it freaked me out. Eventually, I found peer support to be very helpful but there is definitely a balance of how much we can/should read when we are processing these…[Read more]
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David Morgan joined the group
Research and Development 5 months, 1 week ago -
David Morgan replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 3 weeks ago
I am 50 y/0 and the thoughts of my parents ( 70’s) and daughter ( Sr. Highschool) about my diagnosis haunt me more than my ultimate destination. I feel like I have so much unfinished business so sharing with them and imparting the reality at this time is beyond words although I try my best to be diligent and a good steward of information for…[Read more]
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David Morgan and
Christie Patient are now friends 6 months, 3 weeks ago -
David Morgan posted a new activity comment 6 months, 3 weeks ago
Thank you, after being ” recently ” diagnosed 1st HRCT 3 mis back and 1million it seems auto- immune labs all negative ( bitter sweet) now being put into OFEV protocol though I understand it can take a bit to finally get 1st dose, I’m actually beginning to grasp and process the diagnosis and looking for people who can relate and maybe just share…[Read more]
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I am sorry to hear your diagnosis journey has been a bit of a rodeo.. that is not uncommon sadly. But on the bright side, you have just found a big community of people to commiserate with! Feel free to post in the forums and see who you meet. There is a whole forum just for OFEV topics if you need more info about it. Let me know if you need help…[Read more]
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David Morgan became a registered member 6 months, 4 weeks ago
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Welcome to the PF forums David, we’re glad you found us.
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Thank you, after being ” recently ” diagnosed 1st HRCT 3 mis back and 1million it seems auto- immune labs all negative ( bitter sweet) now being put into OFEV protocol though I understand it can take a bit to finally get 1st dose, I’m actually beginning to grasp and process the diagnosis and looking for people who can relate and maybe just share…[Read more]
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I am sorry to hear your diagnosis journey has been a bit of a rodeo.. that is not uncommon sadly. But on the bright side, you have just found a big community of people to commiserate with! Feel free to post in the forums and see who you meet. There is a whole forum just for OFEV topics if you need more info about it. Let me know if you need help…[Read more]
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Thanks for the encouragement. The gauntlet of esophagrams, more HRCTs ECHOs, etc.. continue as my chief pulmonologist has informed me that they are listing me for an LTx so I’m certain that I will have plenty of more questions as this whole ordeal seems like a blur at times and yet I feel enthusiastic to see all the why’s and how’s I’m supposed to…[Read more]
-
There’s a bunch of resources for approaching and navigating the transplant process on our site. Myself and Sam Kirton write columns on the subject–he as a patient and me as a caregiver. Feel free to reach out anytime if you need support. It can be pretty overwhelming.
-
Thank you Christie, as I hear mire from my next appointment I will share more and also research the columns of yours and Sam’s as you’ve suggested. I appreciate your time and consideration.
-
I am however learning, for me, that balancing my research requires balance ( emotionally, spiritually, so I don’t get lost in a rabbit hole of nothing but this but also living everyday life. Trying to at best without getting too lost in the forest for the trees. It’s a tight rope of support, education, emotions and keeping joy. I hope to find a…[Read more]
-
Absolutely understand that. I didn’t do any research when my mom was diagnosed. I just wanted to know what she and her doctors had to say and nothing else for the internet because it freaked me out. Eventually, I found peer support to be very helpful but there is definitely a balance of how much we can/should read when we are processing these…[Read more]
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Absolutely understand that. I didn’t do any research when my mom was diagnosed. I just wanted to know what she and her doctors had to say and nothing else for the internet because it freaked me out. Eventually, I found peer support to be very helpful but there is definitely a balance of how much we can/should read when we are processing these…[Read more]