fred-schick
Forum Replies Created
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I talked to the family members about the deceased, as a person, and not as IPF patient/victim. I have seen several of my IPF peers die and have ceased counting because that depresses me. It may be difficult to be an IPF patient for whom the disease is slowly progressing but we are all different and some more fortunate than others. Hope this helps.
Fred Schick
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I was diagnosed nearly five years ago and my wife was present. We knew from the radiologists report that I had Pulmonary Fibrosis. Part of the testing, to determine if eligibility for OFEV or Esbriet, required testing by a Rheumatologist, who both of us knew. He was harshly candid in his assessment and we wondered if we should stop at a funeral home on the way home.
The Pulmonologist, who made the official diagnosis, was very kind and assured us that he had patients who lived far beyond the 3 to 5 year statistic that frequently appears on the Internet. He also insured me that he would keep me comfortable during my IPF journey and he has.
My first year was very depressing. Both Ofev and Esbriet made me very ill. Eventually, both the doctor and myself agreed that quality of life was more important to me. When this decision was made, we shared it with my adult children and ultimately with grandchildren. I joined a pulmonary rehab program and a support group. I also became an Ambassador for the Pulmonary Fibrosis Foundation. I walk 1t least 40 minutes every day, with my beloved dog, and stay active. For the past several years, I have sought to limit activities to once daily.
I love the support I get from my family. Everything is scheduled so that I can have an afternoon nap. I try to be as “normal” as possible by participating in local government, counseling new IPF patients, fund raising. In closing, I recommend telling one’s family as soon as possible. All of us need as much support as we can get!
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I am almost 5 years post diagnosis and learned several things in Pulmonary Rehab early on. First, the stomach gets first demand on oxygen, so eating can effect your oxygen level. I don’t snack between meals and attempt never to eat after 7PM. I sleep soundly for 8.5 to 9.5 hours nightly. I also take a daily nap in the early afternoon lasting about 3o to 45 minutes. While this doesn’t eliminate fatigue, it controls it and allows me to enjoy my waking hours. I exercise twice daily, by walking my dog, for a total of 30 to 40 minutes.
Lastly, I attempt to limit activities to one per day. This would mean a trip to the grocery store is one activity. I do the cooking in our house because I like to cook; some would consider this to be a second activity. I have found fatigue to be very annoying but not as bad as the cough. Hope this helps you.
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I have several people in my support group who are now 7+ years past diagnosis. I am in my 4th year and am not on either Esbriet nor OFEV because my body could not tolerate either drug. From my personal experience, I believe one must participate in pulmonary rehab and exercise daily. A positive attitude also helps. Those people in my support group who well beyond the five year time-span are active, some are on oxygen therapy and others are have been on OFEV or Esbriet for several years.
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I have off Ofev and Esbriet for two years and have found that sugar-free menthol cough drops such as Halls or Walgreens, reduces the cough and the frequency of the cough. I carry these cough drops in my pocket so I can take one as soon as I feel like a cough is coming. I did not have success with commercially available cough medicines.
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I am one of the people who could not tolerate Esbriet or Ofer; I was on both of them, individually for over a year and was so sick that I told my doctor (MD Pulmonologist) that I would rather be dead than to continue with either medication. That said, there many patients in my support group that successfully take these medications and I encourage those who dot continue. I was ill from the very first dosage and it never really improved. No medication is 100% successful so I still endorse both Ofev and Esbriet. I have been off all medication for 18 months exercise moderately 40 to 45 minutes everyday and my numbers have remained constant. Fatigue remains a problem as does shortness of breath but I am still functioning without oxygen. I hope this helps.
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I have not taken Esbriet or Ofev for nearly two years so I can’t blame drugs for lack of appetite nor for increased sense of smell. Last evening, I visited my son’s home and my granddaughter had several aromatic candles burning. Even though the scent was mild, it seemed very strong and objectionable to me even though the other adults did not notice the smell. Prior to IPF, I would eat copious amounts of chocolate and loved desserts. If we order dessert now, it is only because my wife wants it and insists that I share it because weight loss is a problem for me. I never finish my meals, even if the food was a life long favorite. I also refrain from snacks, food or drink after dinner because my stomach feels bloated and my sleep is affected. I believe that IPF affects appetite, taste and sense of smell.
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I tried to take Esbriet and Ofev, separately, over a time span of one year. Both medications made be very ill, uncontrollable diarrhea, extreme fatigue and more coughing that normal. I finally told my Doctor that I felt the treatment was worse than the disease and so he agreed I should stop taking it. This is just me because others in my support group have successfully taken both drugs, some for over four years. I don’t really crave food and eat because it is time to eat. My weight loss has been moderate but I have started, with my doctor’s approval, to drink a can of Ensure about 4 days per week. This stabilized the weight loss and increased my protein intake.
In summary, we are all affected differently by IPF; work with your doctor to develop a treatment plan that helps you cope with the disease. I also suggest daily, moderate exercise.
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I have found Pulmonary Rehab at my local hospital to be very helpful. A side benefit of these programs is learning how hard you can push yourself without causing undue stress. Daily exercise is good, my goal is 5000 steps daily unless the outdoor temperature is below zero. If a support group for PF is available, join it. You will be able to talk with others who understand what you are facing. I was diagnosed in August, 2017 after a lengthy diagnosis period. You will find that PF affects people differently, so listen carefully, ask many questions and work hard at keeping a positive mental attitude. Lastly, use the Pulmonary Fibrosis Foundation as your data resource for nearly everything you may want to know about the disease. Good luck to you.
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I avoid processed sugars, as well as artificial sweeteners, but it is difficult to totally eliminate them. Last spring, I added cinnamon swirl bread to my daily breakfast diet because it tasted so good. When I had my quarterly blood test. I found that my Trigliceride count had dramatically jumped. I replaced the cinnamon swirl bread with oat meal and natural honey; the next blood test showed the Trigliceride count bake to the normal range. Admittedly, this is one person without clinical testing standards but it reflects my personal experience of adding sugar to my daily diet.
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My pulmonologist prescribed Omeprazole (over-the-counter drug) at time of diagnosis three years ago; this helps control GERD nevertheless I had occasional chest cramping. His opinion is that this could be skeletal based pain and not IPF. I continue to take this medication because GERD can be as painful as the chest cramps. I find that drinking water and deep breathing also relieves the chest cramps.
I get leg cramps more frequently than chest cramps and they do hurt. One of my Pulmonary Rehab nurses suggested eating a teaspoonful of mustard; this has been very effective for me as it causes the cramp to subside within a few minutes.
Hope this helps…
Fred
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I have found that eating only small meals, and more frequently, helps. If I do eat a large meal, not only am I uncomfortable but also do not sleep well. My weight loss has been minimal but significant when viewed over a three year period. Everyone is different so do what works for you,