Robert Obrien
Forum Replies Created
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@mark-koziol
Mark, I had a bi-lateral in June and my situation is the mirror image of yours. Tacorlimus as well as Prednisone are the culprits but thanks to you and your empirical data, I now know what to expect. Thanks!
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Ross, crank it up; there’s no such thing as too much O2 so find the setting that meets your requirements. I use the Inogen 3 (4 years) and I have it set to the max, 4. The biggest problem will be battery time; the higher the rate the more power will be needed. Good luck and stay well!
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@kristin-andrews
Kristin, strange things do happen. I have had great results at MGH never had trouble getting help or questions answered etc. I’m sorry your experience has been so poor. My pulmonologist is Dr. Zebrek at BID; just great. Sound like you’re in Westboro; I’m originally from Worcester. Stay well and keep your eye on Mom.?
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@kristin-andrews
Kristin where do you live in MA? I am on the Cape. My pulmonologist is at BID but, with his recommendation, I have been tested 2X for transplant at MGH and am currently listed. Everyone I have dealt with at MGH has been great but I haven’t dealt with everyone. Let me know if I can help. Reach out for Aliaa Barakat @ (617)412-0356 or [email protected]. you may fid her quite helpful, I hope.
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I think anybody with IPF has one choice – hunker down!
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@dec01
I started Esbriet in January, 2016. I was ordered to stop on February 26, 2020. I am going to be listed next week after a 2 week flush of my system of the Esbriet. They do this because of bleeding concerns. I had minor problems in the beginning and for the most part, I never missed a dose but I would have stayed on it as long as they wanted me too. I think it was important.
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I pick up where I left off on May 31 (see above). I went back in November and the opinion was that I was a prime candidate for listing at MGH. However, I had to go through the testing process all over again from FVT to cardiac catherterization. I have now completed everything. They pulled me off the Esbriet and it needs to flush out of my system (2 weeks) and I will then be listed. I am looking forward to the surgery and recovery✝️? because the alternative is of no interest to me at this time. I’m on O2 just about 100% and breathlessness is severe so I hope the wait won’t be too long. I live about 1.5 hours from MGH with in-law relatives in the Boston area. My caregiver is my wife, an angel; I don’t know what I would do without her. My caregiver team is rounded out by my brother and sister here on the Cape. My daughters have told me they will be flying in as well (“no arguments Dad”). Because of the frank and straightforward discussions with all the professionals at MGH, most of my fears or concerns have been assuaged. I am ready to go. If you are considering this option (I don’t think at this stage there are many others) talk to the transplant team at your hospital, ask a thousand questions and then a thousand more. If they are anything like “my team” you’ll feel more confident and hopeful in whatever decision you make. I will keep you posted. Good luck!?
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I have been pretty diligent about rehabilitation and my maintenance program but for the last few months I have not been able to keep up on the treadmill or bike as my SpO2 levels nosedive not to mention the acute shortness of breath on 6L of full flow O2. I continue with the exercises (with 3# weights) and stretches and I head up to MGH tomorrow to continue the process. I am scheduled for a 6min walk test which will be a total failure as I just did one at MGH in November and I got below 80% after 2min at which point they automatically stop the walk. I will meet with the social worker and the bean counters as well as doing required lab tests. I am 73 and I think I am still in pretty good shape although I have lost over 40 pounds but this is due to the Esbriet which will be discussed tomorrow and we’ll see what they want to do. Onward and upward!
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Hi Mark-I was informed by the transplant team at MGH that I will be listed. I have begun the testing (second time) for final evaluation. I tested in 2017 but for the last 2 years I was deemed “too stable” to list. However, that has changed now. After all IPF is a progressive illness and I have been sliding, accelerating somewhat over the last 7 months. I am 73 and was told last May at my periodic evaluation that that figure factors more importantly now into the equation and they were going to look more closely at me. Well 2 weeks ago they did and now I’m off to the races. My final procedure will be with a cardiologist in January. If all is copasetic, I will be listed. Should turn out to be a cathartic year for me and my family.
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Hi Mike, I agree with Mark. I was diagnosed in September, 2015 and have been on Esbriet since January, 2016. I honestly feel that I have had this disease for 5 years now and although I am going downhill, I think the Esbriet has help keep me upright. I have been tested for transplant (the only known “cure” at this time) but am too stable to be listed yet. I am 72 and except for a lousy pair of lungs, I’ve been told at MGH I am in pretty good shape. If they offer me a transplant, I’m gonna take it. I feel that right now, I’m existing but I want to be living and I think a transplant will give me that back to me or at least most of that for a few more years.
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My pulmonologist and the transplant team go by test results. I have been on Esbriet since January, 2016. Side effects have been appetite loss, weight loss (not the worst thing in the world), occasional mild headaches and fatigue, all pretty manageable. I will stay with it until they say stop and I really don’t expect that to occur until I get a transplant or I cash in my chips. This disease sucks and can really get you down. Bottom line, keep your MD’s informed and heed their advice. Good luck to you David and all my fellow interstitial lung disease travelers!
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Charlene, I feel the same way in the morning after being in bed for 7-9 hours. However, like you, once I begin activity, even if it is just sitting watching TV, I bounce back. I often feel, though, part of my fatigue is attributable to anxiety. One’s life turns 180° with this disease and living for me without yard work, golf, walking, traveling etc. is depressing as hell and I am always on guard against letting myself get too down but it is a part of this or any fatal illness and this is a progressive disease and I can tell when I’m slipping and fortunately they keep a pretty good eye on me at MGH where I have been tested for a transplant. Sometimes I just feel like screaming “Let’s get on with this!” and roll the dice. Living with IPF is really not living; it’s existing.
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I don’t have or have noticed a metallic taste but I have had a loss of appetite (<40 lbs.). It’s the nature of the beast.
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@davidota , Mass General Hospital in Boston, MA.
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Thanks David. May I ask how old you were when you received your new lungs?
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David, thanks for the feedback. Our stories are in parallel, save that I am awaiting listing. I work from home on my “brains” so that my work is easy on me. I was diagnosed in 2015, have been on Esbriet since January, 2016 and cleared all transplant testing at MGH in December 2017. I have 6 month evaluations and am still considered too stable to list but given my age (72) they are beginning to feel that I am getting closer. Their assessment is that overall I’m pretty healthy but I have a lousy set of lungs. At my last assessment in May they ordered a stress test which went fine. They will re-evaluate in November. I just insisted that they not let me get too ill to qualify. They assured me they won’t. I will have a family pow wow in August but I think the consensus is a go on transplantation. Not being to be able to do much of anything is no way to live so if the offer comes, I’m in.
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David, pardon my stupidity but what is FMLA? Also, did you have a double transplant or single and what hospital did you have it done?
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I have lost 35lbs. +/- since starting Esbriet AND that is the culprit as opposed to simply my disease (IPF). The transplant team at MGH isn’t overly concerned because my BMI is OK and I certainly could stand to have lost most of those poundage. I used to love to eat, I mean I loved it. Now, I actually don’t look forward to mealtime. A lot of my resistance is due to smell – I actually get turned off by cooking odors that never bothered me in the past. It can be a real turnoff even before I sit down to eat! I force myself to eat many of my meals. Having said that, I soldier on because I have to. I won’t give in to this disease; it will have to come and get me but there may be a transplant before that happens. You know what? I think I’ll go get a lobster roll. Yeah that’s it, that’s one way to overcome my resistance. Keep on truckin’ everyone!??
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Yes, good to go for air travel. Your MD should write a prescription for the POC. The tendency of all insurance companies is to say no but the MD’s office are well versed in the ins and outs of insurance protocols including Medicare.
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Welcome to the Forum. I have IPF. Some thoughts:
1. I use Inogen POC’s covered by Medicare; so far (3 years) no problem;
2.I have been on Esbriet for 3+ years; some side effects mostly loss of appetite occasional headache and a feeling of malaise but all have been manageable; I feel the reward outweighs the risks (side effects);
3. I am in the lung transplant program at MGH (Dr. Astor). I “passed” all the testing and the approval came in December, 2017 but I was too “stable” to list. I have had 6 month evaluations since, the last being 5/7/19. I am 72 and although age is becoming a factor, MGH’s position is no one is aged out, rather is based on the individual’s overall health. They will see me again in November. We’ll see.
Trust this helps. Hang in there and good luck in Boston.
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I have completed the evaluation at MGH. I am too stable to be listed. I am 72 and, although I have been told you age out at B&W @ 70, this is not so at MGH. I met 2 weeks ago with Dr. Todd Astor at MGH who ordered a stress test as an update to my cardiac situation (stent placed in 2013) and the results I am told were unremarkable. So, I go back in November for my 6 month evaluation to see if I can be listed. He did say that age figures more into the equation as you get older. I have a friend in Plymouth and fellow rehabber at CCH who had a double done in 2017 at 74 and is doing very well. (Dr. Astor told me of an 81 year old they had done a couple of years ago). He has had some kidney problems and that is being addressed by MGH but he is back on the golf course and he tells me his game is very rusty. Great folks at MGH and although the process of evaluation is lengthy and strenuous, it is worth it especially if they think you are a candidate. If not, you know exactly where you stand. Stay with it Paula; those guys are terrific!
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Paula, when did you get on the list? How long after testing were you notified? I have been thoroughly tested at MGH (12/17) but I am told I am too stable. My next meeting with the team (Todd and Mauricio) is in November. I am getting worse and I have followed Anne Lafleur’s guidelines and am wondering what I may be in for each time I have my follow up meetings. I think I will probably have to retest but I can handle that. Astor ordered a stress test in May which went fine. I am 72 and he said they need to consider health and age in my case. We’ll see what happens.
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Hello Richard Jarvis. Good to see you are experiencing benefits from laser therapy. What is your diagnosis? Is your pulmonologist on Cape or Boston? What led you to Dr. DeSimone? I have IPF since 2015 and on Esbriet. Always looking for an edge!