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ARMY PETE and
Jan Riche are now friends 3 years, 11 months ago
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Jan Riche replied to the topic Manufacturing Complex Organs Using a 3-D Printer in the forum Pre/Post Lung Transplant 3 years, 11 months ago
I would definitely take one, my Mom had a foreign object in her body for years, a pacemaker, not quite the same but close. As for biodegradable, my whole body is biodegrade. If they could manufacture them maybe they wouldn’t have more likely to have said yes to my application. Besides, I am an unbearable optimist.
Jan -
Jan Riche replied to the topic Recent diagnosis; so many questions in the forum Diagnosis Information and General Questions 3 years, 11 months ago
Just went online and found a number for Imogene rentals. 1-855-213-4372. I would send a link to the web site but that is beyond my tech abilities. At first getting to understand the O2 process is confusing but it clears up eventually. At least that has been my experience.
Jan -
Jan Riche replied to the topic Recent diagnosis; so many questions in the forum Diagnosis Information and General Questions 3 years, 11 months ago
I too used Imogene. They are Medicare approved. They provided an in-home concentrator that went to 10 liters and a POC that went to 6 liters. What I really appreciated was the size of the in-home concentrator. It was small enough to fit in an over-head sized luggage so I did not have to worry about getting a unit at my destination. The POC had a 6…[Read more]
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Jan Riche replied to the topic Way to handle side effect nausea in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
Meral ( @meraltemel ), I too had such serious side effects that I decided that my quality of life was more important than slowing down the progression of the disease. I stopped taking it. My doctor changed me to Esbriet. I don’t have any side effects from this medication. It is supposed to do the same thing.
I hope that is a possibility for you.…[Read more]
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Jan Riche replied to the topic can someone talk about the end days in the forum Diagnosis Information and General Questions 3 years, 11 months ago
Lorena,
Thank you for your reply. It comforts me to know I will not be gasping for breath at the end. Breatlesssness (Lot of s’s there) is the thing I fear the most. If I can avoid it in any way I will do whatever I need to do. It takes me forever to do some things. I move at a snail’s pace. I used to do 10 minute showers now it’s an hour.…[Read more] -
Jan Riche posted a new activity comment 3 years, 11 months ago
Hi Denny,
I live in Tucson Arizona, my Galapagos trial is at Banner Hospital and the U of A. The Cleveland thing sounds interesting. How do you get in touch with them? -
Jan Riche replied to the topic Indalo Therapeutics Phase 1 Trial On IDL-2965 in the forum Flash Briefings & Podcasts 3 years, 11 months ago
I forgot to add that I conquered the flash briefings. Listened to my first today.
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Jan Riche replied to the topic Indalo Therapeutics Phase 1 Trial On IDL-2965 in the forum Flash Briefings & Podcasts 3 years, 11 months ago
Hi Charlene,
I too hope the medical developments are in time to help you. I have grown fond of you through this forum. I appreciate your honesty and openness. Those are truly wonderful traits.As for your question about clinical trials, I am hoping to qualify for a clinical trial called Galapagos. I am hoping that the name which reminds me of…[Read more]
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Jan Riche replied to the topic Flash Briefing: IPF Patients Switching to Esbriet to Ofev Stopping Treatments, Possibly Due to Low BMI in the forum Flash Briefings & Podcasts 3 years, 12 months ago
Hi Charlene,
Interesting topic. I had to change from Ofev to Esbriet about a year ago. The diarrhea got so bad it was unendurable. What quality of life I had was totally gone. I couldn’t leave home and couldn’t maintain my hygiene without difficulty. That was the determining factor. That experience left me apprehensive about Esbriet, fearful that…[Read more] -
Jan Riche replied to the topic can someone talk about the end days in the forum Diagnosis Information and General Questions 4 years ago
I am not sure if I am on the right track but I believe I am in the end times. I did not get approved for a lung transplant so there is no option for me. My need for oxygen is going up quickly. Just being still requires 8/9 liters, if I need to get up I have to use a separate source of O2 at 6 liters which puts me at 14 liters. Just to sit up in…[Read more]
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Jan Riche replied to the topic Healthy Solid Food Recipes in the forum Healthy Recipe Sharing 4 years ago
Hi,
Four years ago I was diagnosed as prediabetic. My doctor suggested a class that is a cooperative effort between the YMCA and the CDC (Center For Disease Control). They put me on a diet that simply had me restricting fat grams. There was an app that helped me count them. I found that my eating very naturally included healthy food, as the only…[Read more] -
Jan Riche replied to the topic A condition with no clear diagnostic criteria – Idiopathic in the forum Diagnosis Information and General Questions 4 years ago
Hi Army Pete,
Love the Army, was a WAC in the Vietnam era, but did not serve in Vietnam Nam or Japan where a lot of support served. I believe the Army made me grow up. Certainly gave me an education through the GI billAs to OFEV, I had the same problem but changed to Esbriet and no side effects. No way to know if it’s slowing down the IPF but…[Read more]
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Jan Riche replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years ago
Charlene,
I am truly sorry to hear that it’s still stressful for you. It must be difficult to see her on a regular basis. My heart goes out to you and I hope additional time will soften the blow.
Jan R -
Jan Riche replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years ago
Hi Charlene, I know how it feels to be deeply hurt by someone close. In my 77 years it has happened. Sometimes my relationship has survived and at other times not so much. For me,it would be important to know if the person was just frustrated or meant to hurt me. I don’t know exactly how I would know and I don’t know if I have assessed it right…[Read more]
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Jan Riche replied to the topic Portable oxygen in the forum Diagnosis Information and General Questions 4 years ago
Hi,
This is my second attempt to use this forum. Hope it works. Oxygen suppliers have been one of the most trying thing about my IPF. Luckily I have had really good advocates that worked for my pulmonologists. One from Jewish National in Denver worked to get me set up with Enogen to rent a home concentrator and POC. I started out with overnight…[Read more]
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Jan Riche replied to the topic Tips for Making A Shower Easier with Pulmonary Fibrosis. in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 1 month ago
Hi Charlene,
My IPF has accelerated over the past six months, my O2 has gone from 6 liters to 7-9 depending on activity. Even at 9 I have to go slowly with rests to let my sats recover. Showering has become an issue. I’m in a wheelchair because walking drops my O2 sats to low 70’s almost immediately.
To shower I get everything set up, shampoo,…[Read more]
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Jan Riche replied to the topic Dying from IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 1 month ago
Hi Bill,
I was sorry to hear about your struggles, makes my journey sound like a walk in the park. I am 76 (77 next month) and my O2 requirement has just gone to 7-9 liters depending, so I don’t do much that requires moving, which means that I don’t cook any more. I miss that a lot but didn’t have to sell my pots and pans.
Luckily I love reading…[Read more]
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Jan Riche replied to the topic Hearing Others' IPF Story: Pros & Cons. in the forum Caregivers and Spouses 4 years, 1 month ago
Hi Charlene, I’m sorry you had this experience, I know how much I need to forget for awhile that I have this condition. But I also know how difficult I find it to be in the company of a negative attitude, I don’t seem to care so much about the content of the conversation as I do the attitude. My friends and I can talk about this disease and it’s…[Read more]
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Jan Riche replied to the topic Achalasia and Lung Transplantation in the forum Pre/Post Lung Transplant 4 years, 1 month ago
Hi Mark,
My esophageal motility disorder is a slow peristalsis, my esophagus is slow but not blocked. The major thing I notice is how long it takes to eat. The worst part of eating is that my food never tastes right, I think that is due to my meds. I keep thinking with a reduced intake I should lose weight but my lack of exercise seems to k…[Read more]
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