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Michael Lamkin replied to the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 2 years, 9 months ago
That’s 3-4 visits per week to the transplant center
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Michael Lamkin replied to the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 2 years, 9 months ago
I’ve been told there are about 20 different meds to take after transplant and 3-4 visits to the transplant center. I was wondering if the meds taper off to a more reasonable amount and how long do the 3-4 visits last.
thanksMike
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Michael Lamkin replied to the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 2 years, 9 months ago
I’ve used the VA for all of the test they require to make a decision regarding a transplant and was turned down because of neuropathy and age (74). I had my first appointment at St. Joseph’s in Phoenix a couple of weeks ago and was told they had three additional tests they required before presenting everything to the committee that will make the…[Read more]
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Michael Lamkin replied to the topic DLCO level in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
Hi Liam
I think the normal DLCO level is between 89-110 so my reading of 30 isn’t good. My other numbers are in the 80’s so I’ll be asking my doctor what I can do to get the DLCO no. Up (if that’s possible) I’ve also noticed increased breathlessness over the past few months and that really …. I just finished 24 physical therapy sessions a few…[Read more]
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Michael Lamkin replied to the topic After Care Requirements for a Lung Transplant in the forum Pre/Post Lung Transplant 3 years, 12 months ago
Thanks so much Mark for your reply! I admit I’m possibly being overly optimistic that a medical miracle will result in a drug which not only stops the fibrosis but will also reverses the disease. My last breathing test showed my DLCO reading as 30 (I think normal is 80-110) with the FVC 81 and FEV 81 so I realize I’m probably in the late stages…[Read more]
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Michael Lamkin replied to the topic After Care Requirements for a Lung Transplant in the forum Pre/Post Lung Transplant 3 years, 12 months ago
Sorry Mark, I just noticed this post after I tagged you with questions regarding this same subject. Thanks for the information as I found it very helpful. Do the post surgery medications have any negative side affects?
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Michael Lamkin replied to the topic Sharing my one year history with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 12 months ago
Hey Mark, I’m considering a lung transplant and hopefully will be able to qualify for the program. I know everyone’s different but can you tell me what your experience has been with regard to recovery from the surgery and post surgery medications? I have to admit I’m more than a little anxious about the whole thing.
thanks and take care
Mike
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Michael Lamkin replied to the topic Manufacturing Complex Organs Using a 3-D Printer in the forum Pre/Post Lung Transplant 4 years ago
Too bad it’s not yet a reality yet. I’d use it in a nanosecond.
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Michael Lamkin replied to the topic Laser Therapy Part III in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 1 month ago
Here is the link to the Egyptian laser study if anyone still needs it.
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Michael Lamkin replied to the topic New Forum: Laser Therapy Results. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 2 months ago
Great idea Charlene. I’d be really interested in seeing the results whether they be favorable or otherwise. It would be great to find a meaningful treatment without the use of drugs which I personally despise
Have a great day!
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Michael Lamkin replied to the topic Laser Therapy Part III in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 2 months ago
Hi Charlene
Thanks for your reply to my post a week ago regarding the laser therapy study and the financial burden placed on IPF patients since insurance companies don’t cover the cost. I saw my doctor today and she said that normally where truly unbiased studies are conducted by doctors there is no charge to the patient for treatments. Although…[Read more]
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Michael Lamkin replied to the topic Laser Therapy Part III in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 2 months ago
I’m guessing that most IPF/PF patients won’t participate in the laser therapy treatments simply because their insurance won’t pay for the treatments. Most patients are probably already financially strained by no longer being able to work.
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Michael Lamkin replied to the topic Tagging & Posting Updates on the PF Forum. in the forum Using Our Forums 4 years, 5 months ago
Thanks Charlene!
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Michael Lamkin posted a new activity comment 4 years, 5 months ago
@charlene-marshall
I thought I posted this on the Esbriet or Ofev forum but don’t see it there. I’m guessing I just posted to my profile page? -
Michael Lamkin posted an update 4 years, 5 months ago
I saw my doctor a couple of weeks ago and I was switched from the Esbriet to Ofev because of a nasty rash I had gotten about 3 months ago which was determined to be caused by exposure to sunlight. I took myself off Esbriet a week before seeing the doctor only because I need a break from the constant diarrhea which I’d had a few days after starting…[Read more]
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Hi @michael-lamkin, thanks so much for your post and I hope you had a wonderful holiday and new years!
Glad to hear you made the switch to Ofev, but sorry it was due to a nasty rash, that is horrible! A few other members of our forums experienced this as well unfortunately when it came to Esbriet. I’ll keep my fingers crossed that your adjustment…[Read more]-
@charlene-marshall
I thought I posted this on the Esbriet or Ofev forum but don’t see it there. I’m guessing I just posted to my profile page?-
Hi @michael-lamkin, thanks for your reply. It looks like you posted in the update box, as opposed to the Esbriet or Ofev forum. I was able to see it and reply, as will others be able to see your post. It is just on the homepage of your profile vs. the topic thread. Hope this makes sense 🙂
Charlene.
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I have a banana and glass of milk with my Ofev. That works well for me no GI issues. I do remember when I first started I had slight cramps but that has passed.
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Ginger Adelstone and
Michael Lamkin are now friends 4 years, 6 months ago
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Michael Lamkin replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 6 months ago
Hi all! I’ve been on the Esbriet for about five and a half months. For the first two months the only side effects I noticed were increased shortness of breath, some loss of appetite, nausea and more weakness than usual. Then the nausea seemed to subside a bit the diarrhea started which continues even now. I also got a nasty rash on my arms and l…[Read more]
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Michael Lamkin replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 7 months ago
I just wanted to share my experiences so far after using Esbriet for a little over three months.
Worst side effects so far are diarrhea (constant after 7 weeks use) and a skin rash on forearms, hands, legs and scalp probably due to sun exposure. The rash started as red spots on my forearms about the size of a pencil eraser and then became kind of…[Read more]
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Michael Lamkin replied to the topic Patient Support Group Poll in the forum Polls & Quizzes 4 years, 9 months ago
Hi Charlene, I’m not involved with a local support group.
michael Lamkin
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Michael Lamkin replied to the topic Voicing Vulnerability: What I'm Scared of as a PF Patient in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 9 months ago
Hi Charlene
Although I think I can identify with some of your fears regarding this disease I must also say that I’m much older (72) than you so I can’t really say I know how you feel. Although Ive convinced myself I don’t fear death I have to admit I sometimes have a certain amount of uncertainty. Im pretty sure this uncertainty at times is…[Read more]
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Hi @michael-lamkin, thanks for your reply. It looks like you posted in the update box, as opposed to the Esbriet or Ofev forum. I was able to see it and reply, as will others be able to see your post. It is just on the homepage of your profile vs. the topic thread. Hope this makes sense 🙂
Charlene.