[bruce-f]

Dear George-Richard,

Thank you for posing this very practical question.

In my father’s final year, at the age of 72 and six years after his IPF diagnosis (pre-OFEV), he was suddenly confined to a hospital bed after an unrelated and undetected blood loss left him profoundly anemic. He had been living at home without oxygen, and doing the best he could to manage his cough. Once in the hospital he was put on oxygen, and remained on O2 until his death about twelve weeks later.

During his hospital stay, he and his caregivers hit upon a routine of using benzodiazepines (like Xanax) to help offset the feelings of anxiety that come with a low pulse-ox. These feelings were more intense in the evening and at night, and he usually took the medicine around dinner time. Then he was able to relax a bit, and he even seemed to enjoy the psychoactive state that the meds provided.

His condition failed to improve, despite great (U.S.-based) medical care. At the end of that summer, as his O2 use crept up and his energy flagged, he made the decision to enter hospice at home. He returned home, enjoyed an anniversary dinner with his wife, watched the Westminster dog show, and went to bed. In the middle of that night he called for the morphine provided by the hospice, and died before dawn. Short of having a heart attack or an aneurysm, I cannot imagine a more humane death. It is my hunch that morphine is widely used in these final moments—not to hasten death, but to make the process of dying less agonizing. I have always admired the way he approached his death: his decision to enter hospice was very emotional for all of us, and required a lot of emotional work and inner searching to make the decision to end interventional care and let his body die.

Fifteen years later, I have my own IPF diagnosis, and I take comfort in having spent this time with my father in his final months of life. His needs grew as his strength waned, but we are fortunate in our family to have each other in those moments. He shared stories and memories with me all summer, and his life became pretty basic in the last weeks of his life: breathing, drinking, eating, managing waste, sleeping. He was fortunate to enjoy food enthusiastically to his last day, something I as an OFEV patient can only dream about.

We all have our path, and each will be different, and none of us knows exactly what to expect. I am glad to be reminded in this thread that one advantage of living with a chronic, progressive illness is that we can use our time consciously to put our relationships and our worldly affairs in order. (Although I’m beginning to realize my ability for putting things in order may elude me to the end!)

I am sorry you now see to have several major systems in disrepair, and I can only imagine the challenge of managing multiple medications. I wish you all the best, I hope that hospice is available to you when you are ready, and I hope your loved ones can spend time with you during your remaining time.

Warmly, Bruce

Not a doctor/diagnosed 2022/feeling okay but for the OFEV side effects/fortunate to have health insurance and to live near a major university hospital with a pulmonary research program/

[bruce-f]

This is a very helpful thread—thanks to everyone for sharing their strategies!

I am delighted to add Pepperidge Farm’s cinnamon bread to my grocery list. Yummy.

I also want to share my own magic formula, which is Fairlife milk products. Their whole milk and chocolate milk are lactose-free, enriched with protein, and rich in calories. Fairlife makes 14 oz. protein drinks called Core Power, which do not require refrigeration and make for a good portable snack, but their regular milk products keep in the refrigerator for several months, which I find convenient.

When I am nauseous and unable to eat a proper meal, as I am much of the time, a glass or two of the chocolate milk can get me through.

Be aware that it is important to eat or take fiber, as these milk products can cause horrible constipation.

I am grateful to hear the conversation about fiber in this thread. I am a believer. For what it is worth, my internist suggested using Miralax for chronic constipation, rather than colase or senna.

I am also intrigued to try some of the other ideas posted here. Yes especially to the boiled potatoes suggested by the poster from Poland! Dziękuję ci bardzo, Glaca! Powodzenia! (I do not speak Polish, but traveled to your wonderful country years ago!)

All the best, Bruce

[bruce-f]

I frequently experience painful bloating. I count it as one of the numerous challenges of being on OFEV. I am in an almost constant state of gastric distress, with the symptoms unpredictable and ever-changing: nausea, sometimes with vomiting; aversion to food, cramping, constipation, and bloating. I treat these ailments symptomatically as well as I can. I have modified my diet, and I take a range of over the counter meds to help with my symptoms. I find eating cannabis helps with the nausea and stimulates my appetite, and Fairlife brand milk offers extra protein to limit nausea when taking OFEV. (Fairlife may not be available in the UK, but you can look for a protein-fortified drink of some sort to help the medicine go down.)

I hope this helps. I am no doctor, but I continue to experiment with ways of mitigating the effects of OFEV. It’s a tough drug to tolerate.

Best wishes—

[bruce-f]

Hi folks—I am not a doctor, and do not know if my experience will help to reassure Gavin or others, but I know that when my dad’s pulse ox started falling irretrievably to the point where he became panicky, he was administered benzodiazepines as needed, which seemed to calm him, especially during the nighttime hours. This was In the U.S. about fifteen years ago.

I agree with the person who advocated that you take a squeaky wheel approach to this. There is no reason why you should suffer any more than available treatment allows. Insist on treatment for your anxiety! Breathing exercises, medicines, meditation exercises: you should have access to everything you need. A support group in your area could help you with local knowledge about what is available.

Best wishes!

[bruce-f]

Hi everyone—

I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many needs at once: it is lactose-free, fortified with protein, and it is caloric. Plus, they have chocolate milk! (A serious note of caution, though: there is no fiber in this protein-rich milk, so be very careful to consume loads of fiber in some form; Metamucil or other fiber supplements are necessary for me to drink the Fairlife milk.)

I have found that cannabis is a very reliable appetite stimulator. I have not been much of a weed person since I was a kid, but I find that oral cannabis an hour or two before dinner helps me not only eat, but to find the familiar delight in food that I suspect most OFEV patients miss dearly.

I am still researching what cannabinoids are most helpful in controlling my nausea and stimulating my appetite. One question is whether non-psychoactive cannabinoids can help with nausea and appetite. My next step is to contact the Medical Cannabis Research Center at UCSD to learn what we know about helping people with nausea and food aversions; stay tuned!

All the best to my fellow OFEV patients! It is a miraculous medicine, although managing the side effects is a challenging and ever-changing puzzle.

Bruce Fort

[bruce-f]

Hi everyone—

I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many needs at once: it is lactose-free, fortified with protein, and it is caloric. Plus, they have chocolate milk! (A serious note of caution, though: there is no fiber in this protein-rich milk, so be very careful to consume loads of fiber in some form; Metamucil or other fiber supplements are necessary for me to drink the Fairlife milk.)

I have found that cannabis is a very reliable appetite stimulator. I have not been much of a weed person since I was a kid, but I find that oral cannabis an hour or two before dinner helps me not only eat, but to find the familiar delight in food that I suspect most OFEV patients miss dearly.

I am still researching what cannabinoids are most helpful in controlling my nausea and stimulating my appetite. One question is whether non-psychoactive cannabinoids can help with nausea and appetite. My next step is to contact the Medical Cannabis Research Center at UCSD to learn what we know about helping people with nausea and food aversions; stay tuned!

All the best to my fellow OFEV patients! It is a miraculous medicine, although managing the side effects is a challenging and ever-changing puzzle.

Bruce Fort

[bruce-f]

Hi Lynne,

I am very sorry to hear about your diagnosis.

I have asked my pulmonologist about genetic testing, and there is a test that will identify the genetic markers associated with IPF.  The lab that performs the test is in Canada, and we agreed to return to this topic if my young adult children want to know if they have the genetic predisposition to IPF that I, my dad, and his mom all seem to share.

I am happy to hear that genetic counseling is required to proceed with the testing, and I am also happy to know that genetic counselors will be well prepared to lead our family through the discussion when we are ready to have it.

For the moment, though, we are telling ourselves that (a) knowing one way or the other would not lead to any change in our lifestyles; and (b) the science and available treatments for IPF will change dramatically before our young adult children reach the age when they might be affected by the disease.  We will likely end up testing at some point, but we are not in a hurry.

With siblings well into their adulthood, however, perhaps the calculation is different.  None of us older folks have time on our side quite like those in their twenties, IPF or no IPF!

I would encourage you to ask your pulmonologist about testing for your family.  Certainly, with the anti-fibrotic meds. Ow available, I would want to get a diagnostic workup if I were your family member.  I personally had the good fortune of an “early” diagnosis, and was able to begin OFEV about a year ago.

As for travel, I believe the effect of altitude would vary wildly from person to person.  If you are still breathing fairly well at home, I doubt 5,000 feet will be too difficult; I spent parts of last year at 5,000-10,000 feet and just felt like an old dude who was out of practice hiking in the mountains, but I did not experience any dramatic loss of breath.

The bigger issue when traveling is how or whether to stay on OFEV, which I find pretty unforgiving of changes to my food and rest schedule.  I think I made a mistake to stay on my meds when traveling last year, and have adjusted my expectations about future trips.

Good luck!  I hope this is helpful.  Enjoy the day—

 

Bruce

[bruce-f]

Hi Stella—I am not a physician or a psychologist, but if I can share an insight or two:

– if you are already suffering from or prone to depression, I can only imagine what the diagnosis of IPF or other illness which requires treatment with OFEV would exacerbate the depression.  Everyone lives with the abstract prospect of death, but the IPF diagnosis is a morbidity check that means business.  When I heard I had the same progressive, incurable, and fatal illness, my life took a turn and for the first time in my life I had to have that conversation with myself.

– The nausea, loss of appetite, and fatigue I experience with OFEV is daily, and I have found it to be quite isolating.  I need more rest, which means time alone; I cannot eat anything except smoothies during the day, which means less energy to be out and about with other people.  And the gastric effects of OFEV can mean a lot of time in the bathroom, which adds to the solitude.

All of these factors have led me to withdraw from the world quite a bit.  What COVID began, OFEV seems to continue.

As it happens, just today the surgeon general pointed to loneliness as a major health risk for older people. (See “Surgeon General Decalres Loneliness an Epidemic in America.”). I am reviewing his recommendations to see if there are any ideas that will make sense for me.

One of the liberating things about my diagnosis is that I am discussing my wellbeing more frankly and thoroughly with my medical people than I ever imagined.  I hope you will talk about your depression and ask your caregivers about it—your pulmonologist, your internist, and everyone in between.  There are also regional IPF support groups, and one may exist in your area.

Good luck!  You are not alone, by any means.  I hope your adjustment to OFEV settles down; I have been taking it for a year and I have to adjust every so often to keep feeling well enough to keep functioning normally.  It is not an easy medicine, so go easy on yourselves.

Best, JBF

[bruce-f]

Hi Maria—

Sorry to hear  about your diagnosis, but glad to see you reaching out.

Edible cannabis has helped me with the constant nausea and loss of appetite.

I have been on OFEV 150 mg twice daily for 10 months after being diagnosed with IPF.  I am otherwise healthy and in my late fifties.

My experience with OFEV rhymes with much I’ve seen in this thread: vomiting at least once a week, nausea, loss of appetite, and powerful fatigue.

I have followed the suggestion to eat protein with each dose of the medicine.  I drink a protein-packed smoothie for my morning dose, and usually get through the day without vomiting—but with zero appetite, which makes any form of exercise seem impossible.  I order cases of protein powder and shakes, and consume them every day.  My pulmonologist is telling me to take Zofran sparingly.

I do find that eating cannabis in the early evening helps quite a bit with the nausea and appetite.  The CBD and other non-psychoactive products that are widely available do not help with nausea or appetite.

With this in mind, I typically ingest 25-100 msg of Delta 8 THC about an hour before dinner, and I am able to eat a good evening meal—usually only solid food I ever eat.  I also find the cannabis helps with sleep, which I have struggled with for years.

My Delta 8 dosage varies; I would start with your doctor’s knowledge, and I would start at a much lower dose until you are comfortable with the effects.  But this has been the only way I seem to shake the nausea long enough to eat a proper meal.

I believe Delta-9 THC is stronger per mg. than Delta-8 THC.  Depending on where you live, a knowledgeable dispensary employee can steer you to a dose that suits your needs.

I am a fellow teacher hope you can continue to teach while taking OFEV.  I do not have it in me.  I left work after the terrible fright of teaching in person during the pre-vax year, and for me the fatigue from OFEV would make those 60-hour work weeks pretty tough.

Be well!  Glad you found this board, and hope some of this helps.

Best regards to all!  Any ideas on reducing nausea are welcome!

 

 

 

 

[bruce-f]

1. Mike,

I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical person nor a psychologist, but I can tell you that seeing my Dad go through the last part of his disease and his life makes me less fearful than I would be otherwise.  There are very effective medicines that any compassionate team of caregivers will provide you to help you cope with the drowning sensation; palliative care teams can be wonderful and have helped my family through some of the hardest and most fascinating moments of our lives.

For now I am just living my life, trying (often unsuccessfully) to cultivate healthy habits that my older self will thank me for.  That dynamic has defined my whole life, come to think of it.

Let’s keep moving as well as we can!  And best to all.

[bruce-f]

Mike,

I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical person nor a psychologist, but I can tell you that seeing my Dad go through the last part of his disease and his life makes me less fearful than I would be otherwise.  There are very effective medicines that any compassionate team of caregivers will provide you to help you cope with the drowning sensation; palliative care teams can be wonderful and have helped my family through some of the hardest and most fascinating moments of our lives.

For now I am just living my life, trying (often unsuccessfully) to cultivate healthy habits that my older self will thank me for.  That dynamic has defined my whole life, come to think of it.

Let’s keep moving as well as we can!  And best to all.

[bruce-f]

Hi everyone—I am new to the illness, the medicine, and to this group.  I am working hard to manage appropriate food intake while on OFEV.

I hope there is an active discussion board about nutrition here; I will look and report back to this thread!

Best wishes to all of you!

[bruce-f]

Sorry to hear of your loss.

When the time feels right, I hope you will share something if Ernie Kully’s life with the board.

Be well,

 

JB Fort

[bruce-f]

Here  is an article on familial IPF that covers some of the questions raised on this thread.

I was diagnosed with IPF this spring.  As the son and grandson of IPF patients, and as the father of young adult children who May of may not have a genetic predisposition to develop IPF at some point, I have asked my pulmonologist about genetic testing.

We are likely to pursue this at some point—my doctor  mentioned a lab in Canada that does this testing—but testing would follow genetic counseling and education.

My kids are in their early twenties, so we do not feel the need to act on this at the moment.  I am very interested in adding data to studies about familial IPF.

Best wishes to all—

Bruce

[bruce-f]

Hi Bouleveree—

Haha—I wrote so for so long that I forgot to address your specific question about diarrhea. I have had a bout or two along the way, but as my longer note says the side effects have been much more varied than just diarrhea. I saw that you were a brand-new user of OFEV, and wanted to share some things that would have helped me as I began the medicine. Good luck!!

[bruce-f]

Hi there! My own experience with OFEV’s side effects has been variable. After two years of taking the 150 mg dose 2x/day, I have experienced a range of gastrointestinal ailments, and it is hard to know what to expect on any given day.

I would recommend an experimental approach, and develop a routine of consuming a significant amount of protein each time you take your medicine. I weight about 145 lbs. and make sure I consume at least 25 or so grams of protein at each dose. I have to be careful to consume plenty of fiber along with this protein to avoid constipation.

Loss of appetite has been my most dramatic ongoing symptom, which has posed a challenge for getting that protein on board in time for each dose of OFEV. I drink a nutrient-dense smoothie in the morning with a dairy-free protein powder (I like Orgain) and about 2T of whole flax seeds), and I rarely have an appetite to eat again until dinner. I eat cannabis a couple of hours before dinner, which helps with nausea and gives me the munchies, and usually have a nice dinner and my second dose of OFEV.

I have learned to avoid nausea most of the time, and I try to view nausea as a tool that helps me avoid foods that will not be easy to digest. (Nausea and food aversions can be unpredictable and can come on suddenly, and my spouse has been quite saintly about my occasional last-minute decisions to skip a meal, or have a bowl of cereal after we’ve prepared a savory dinner.)

I keep a Zofran in my pocket and premade protein smoothies in the fridge—often a good go-to if you start feeling depleted but not hungry.

A very specific note: I have found that Fairlife milk products are an invaluable option for managing protein and caloric intake. Fairlife makes single serving protein shakes called Core Power which are shelf-stable, have 26 grams of protein, and are reasonably appealing to drink. A much more affordable variant for daily use are their refrigerated milks, which importantly are lactose-free, enriched with protein and calories, and can sit in the fridge for several months before opening. I opt for the whole milk and the chocolate, and they taste indistinguishable from regular milk. Take extra fiber and be prepared to use laxatives if you find yourself drinking a lot of this milk. It has been a lifesaver, but—word to the wise.

I know this long answer may overwhelm you as a long response to a short question. I am glad you were able to begin with the 100s, and hope you have continued success with the OFEV regimen. I am very grateful for this medicine, and after two years on the medicine have not experience any loss of lung function. The adjustments to my diet have been profound, but I love my breakfast smoothies and I am able to enjoy dinner almost every evening. Yay!

Good luck—keep the conversation going, and enjoy keeping those lungs as healthy with this tricky but effective medicine!

[bruce-f]

I have read that OFEV should not be cut. Call the doc or the pharmacy to check me and good luck!

[bruce-f]

H Vance—

Congratulations on the stable lung reports!!  I really hope you can stay on the 100 mg. dosage twice a day to keep it going.

Your question, and the great success you’ve had protecting your lungs, reminds me of how worthwhile it is to remain on the medicine.  I’ve been on OFEV for IPF for a year and it is a daily struggle—and your good news reminds me that the medicine works.

I am not a doctor, but I have recently found a helpful tool for helping me with some of the side effects of the OFEV.

I have recently found that I do really well with Fairlife milk, including their chocolate milk (yum!), when I drink 12-16 oz. of the milk as I take my OFEV, especially in the morning.  (Evenings are easier because I usually eat dinner before my dose.). Fairlife is lactose-free, rich in calories, and fortified with enough protein to allay the extreme nausea I often feel when I am in that food averse, food deprived state that many OFEV patients will find familiar.  I find I need to add considerable fiber to my diet to avoid constipation when I drink this milk, but the nausea I so often feel while taking OFEV has abated dramatically.

I struggle to eat in the morning, but I can enjoy the Fairlife milk and a vegan protein fruit smoothie with oat milk.  These drinks provide plenty of protein for me to handle the OFEV, and since I’ve hit upon this routine my nausea during the day is usually low enough to manage.

I rarely eat lunch or other solid food during the day, though I will occasionally be up for a snack.  In the evenings, I usually am able to eat a decent dinner, thanks in great part to cannabis edibles.

Sorry  this response was long, but I hope there is something in here that helps you and others.

Stay strong!  All the best, Bruce

[bruce-f]

Thank you, Renee!  My doctor has also indicated that missing OFEV for me in order to travel or for special occasions is not something I should worry about.  I have no underlying conditions, and I am young-ish at 59, and there is a lot I want to do and need to do that are not compatible with my usual 2x 150 mg. of OFEV each day.

I am apprehensive when I miss even a few doses, despite the dispensation my doctor has suggested.  It is the existential puzzle that will define much of the rest of my life: when is it worth it to me to miss the protection?  Sometimes, there has been no choice: I become too racked with gut problems or fatigue, and just have to lay off for a couple of doses.

Today I am allowing myself a little OFEV holiday in order to be able to join my family for a birthday breakfast, which under the full OFEV regimen would not have been possible.  From past experience, I know I will have more energy and less nausea for the next four or five days back on the meds.

Later this year, I plan a ten-day OFEV holiday for another family celebration.  This winter, I tried to power through with the full OFEV regimen and it went poorly: too nauseated to even sit for meals, exhausted, and of course terribly bummed about the whole situation.  That inspired me (with my doc’s blessing) to experiment with OFEV breaks at moments when I need energy and when I want to join my loved ones for meals and doing the normal things that OFEV does not permit me to do.

So: thank you for mentioning your OFEV break for the big Grand Canyon trip!  I would love to hear from other folks about these and other strategies for living with OFEV.

Best wishes to everyone out there contending with this dynamic.

Best, Bruce

[bruce-f]

Thank you for those kind words, Christie.  I posted again today for the first time in a while, and it is nice to know that you found it helpful.  We are all learning from each other, which helps me feel better.

[bruce-f]

Thank you!  That is very helpful.  I struggle with the morning dose and may ask about moving to a 100/150 routine each day.  Good luck to one and all as we navigate our way through the days!