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Indigestion & Acid Reflux
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Hi Josie,
I believe that having up and down periods of breathlessness is normal. I think they call it an exacerbation when it is worse. Could be caused by many things, like a cold, being tired, not sleeping well, etc.
About exercise, there are two kinds, one to build muscle, including abs, and the other aerobic/anaerobic exercise. Strengthening your muscles is always good and the aerobic exercise makes your lungs work, which, I believe, is extremely important for us IPF sufferers. My lung function test and CT scan show no deterioration in the recent 6 months and I credit my exercise for that, although in life nothing is 100% certain. When exercising use a finger oximeter and slow down when you reach 88%. Obviously my 200 mg of Ofev daily also contributes although my stomach will not tolerate the recommended 300 mg.
I wish you a great New Year with IPF in remission,
rene
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Great reply Rene! Thanks for the breakdown of the two different types of exercise, I need to do better at remembering both and working on the muscle strengthening – I believe this would greatly benefit me!
I think the periods of breathlessness are normal as well, unfortunately. I am fighting a bit of a cold / sore throat at the moment so I am finding I am short of breath more often too.
Hoping you had a wonderful holiday and all the best in 2019!
Charlene.
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Hi Charlene, thanks so much for your reply. I also wish you the very best for the NewYear, with the hope that it will be the year that the medical world will find a cure for our common disease, which, considering the progress of present research being done is not such a far fetched hope. Get rid of your cold and sore throat, and please be assured of the gratitude your IPF family has for you for all you do for us with your constant positive, caring and supportive messages. Rene
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Hi Rene,
Great to hear from you, and thank you so much for all of your kind words: I am so lucky to be part of this IPF family as you put it so well! Wouldn’t it be amazing if 2019 saw a cure, or at least, a significant break through in research about how to get rid of IPF? I agree with you, I don’t think that is too far off and hoping we all can be sustained until then. Wishing you a wonderful year ahead and looking forward to our continued friendship.
Cheers,
Charlene. -
Good morning Rene and Charlene,
Thank you for all the great advice. I bought a wedge pillow for sleeping, which seems to help, and I bought an oximeter. So far my readings seem quite good, except my pulse is always a bit high. I’ve started on a daily regimen of strength training and aerobics, and am being careful to watch for 02 saturation as recommended. I appreciate the advice on that. I also find the oximeter helps me to not panic when I get out of breath, as it seems my 02 is still ok, so presumably the breathlessness isn’t having a big impact on oxygen in the blood yet. Hopefully the exercise can keep it stable. Best to you all and happy new year.
Josie
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Wonderful Josie, I am so glad you found the suggestions helpful and that you’re feeling more comfortable exercising with the o2 probe. I also find it reduces my anxiety when I am worried about feeling breathless, and I see the numbers still in the 90s, it really helps me! Really glad to hear the wedge pillow helps for sleeping as well 🙂
I hope you have a wonderful new years Josie, and wishing you all the best in 2019!
Charlene.
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Hi Josie,
I am definitely no expert but some advice from experience:
Good you bought a wedge pillow, it should help against reflux. Remember to move it down your body so that the narrow edge of the wedge is near your hip, just below your waist. That makes sleeping easier, but may put the additional pillow beyond the high edge.
Also good that you are exercising and that your O2 saturation is in a good range. If your saturation is ok and you still are out of breath, that means you have to improve your condition. Walking stairs and doing quads (walking, biking) is very good and if done sufficiently your condition will improve, leading to less breathlessness while keeping your oxygen within correct bounds. And hopefully making your lungs work will reduce or stop further worsening of lung fibrosis.
I am fortunate to be in touch with a world renowned, cutting edge IPF researcher and he gives me confidence that good medical news for IPF sufferers may be coming next year or the year after. Fingers crossed!
rene
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That is such great news Rene, gives many of us hope! I am really glad you shared that 🙂
Thanks for all the advice you provided to Josie as well, I’ve benefited from it and found it helpful as well as I embark on trying new/more exercises to help my lungs in 2019. I appreciate it, and the time you took to share it with us.
Cheers,
Charlene.
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Hi Rene,
Thank you – I think, based on your advice, that I wasn’t using the wedge properly so will adjust it tonight. Yes, I think I need to improve overall conditioning, and now am very motivated to do so! (I’m 54 and really not interested in cutting my life short!!). That’s awesome that you’re connected to an IPF researcher and that there may be some good news coming: I look forward to learning more. Where are you located Rene? I am in Toronto.
Josie
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Hi Josie,
Interesting that you live in Toronto, although I do not envy the cold weather that should be there now. I used to visit friends in Toronto, but unfortunately they are no longer with us.
I am a Dutch citizen, did my university at McGill in Montreal, and after working there for one year I moved to Bonaire, Dutch Caribbean and have lived there since, with an 8 year interruption when I was in Pennsylvania, USA. My IPF research contact is based in New York.
Don’t know if this site is suitable for this private stuff?
Absolutely, no way we are going to shorten our life’s just because of IPF, we’re going to beat it or at least stop all progression.
happy New Year
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Hi Rene and Josie,
If you felt more comfortable exchanging information, you can directly message each other on this site too, it is kind of like private emailing. Not saying you have to, your content is totally appropriate but just something to keep in mind if you’re interested 🙂
To do this, just click on the other persons name and then under their profile you’ll see a blue button that says “private message”. Not sure if this is helpful, but just an option…
Josie, we’re not too far away from one another! I am going to try and arrange a visit with Sandy, who is moving to Toronto while she awaits her lung transplant, to see if we can go for dinner or something in Toronto. If we could arrange it, would you like to join us? Let me know, and of course no pressure.
Cheers,
Charlene. -
Hi Rene,
WOW! Your post just killed what I thought might be a cure-all and might stop people from getting IPF. Most of the people I have been reading about on the forum seem to live in Canada and the cold northern US hemisphere. I was all ready to move south to a warmer climate. Then I see you live in Bonaire, Dutch Caribbean and have lived there most of your life and still ended up with IPF. There goes that remedy but saved me a lot of money. I don’t know how you ended up there but I Googled it and it looks like a really nice place to relax and we must pay to just visit there.
Thank you for your post about the possible IPF help by the IPF researcher that you mentioned. I’ll be watching and monitoring what he/she comes up with. So far, I am out of luck with using some of the drugs that can prolong your life.
We just had 4-inches of snow shoveled off our walks and driveway.
I hope things turn out well for you.
Have a Happy New Year.
Ray King
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Hi Josie,
I am happy you are trying out the wedge pillow. I hope it works well for you. I have had one for 6-years but just use it when I travel someplace. It worked fairly well but I just kept sliding down on it to where it kept me awake a lot at night just repositioning myself up on it. While elevated on it, it would work until the slide down.
I use a hospital type long twin bed which works pretty well. I can adjust the head up to the suggested 30 degrees or more and then adjust the foot part of the bed up to where it’s kind of forms a pocket to hold me from sliding down. The bad part is you have to always sleep on your back but for the wedge pillow to work you have to anyway. I do kind of try to angle my body a little so I am a little on my left side. My Gastroenterologist said that tilts the stomach up a little so the esophagus is a little higher than the stomach. I am taking prescription Omeprazole 2 times per day.
If you are interested in renting a hospital type bed, they are available through a medical supply store. I don’t know what medical insurance you might have but I know some will cover the rent if your doctor prescribes it. They covered mine until I decided I wanted one that was a little longer and had a remote control to adjust the head heights. .I am almost 6 ft tall so I purchased one It seems hospital beds are a little short for me.
I guess you been to a Gastroenterologist if you said you were going to have a gastroscopy? Has he/she suggested a Hiatal Hernia operation? Sometimes they work and sometimes they don’t.
Good luck with whatever you try. A lot of people try a lot of help but I guess it just boils down to whatever you find that works for you are what works for you.
Take care of yourself and have a Happy New Year.
Ray King -
Hi Ray,
well, despite the 4 “ of snow, I am glad you have not lost your sense of humor. Just be happy that you read my post and you saved all that money. But you’re right, one might think living for 42 years in a small Caribbean island, with good air and lots of sea food and diving but too much sun, one may not get IPF. Wrong! The only cause I can think of is that stomach acid travelled up the esophagus and entered the lungs. I have been told that acid in the lungs is like putting acid in your eye. As mentioned before I had a Nissen Fundoplication operation which was supposed to take care of my reflux, but the operation turned out to have failed. So now I am on Lansoprazole and my wedge pillow. I also have a problem sliding down, but I just climb back up….
yes, we keep our fingers crossed waiting for that cure….it’s coming, so is Christmas even if that’s a whole year off.
you too, best wishes for the new year, not too much champagne tonight, not good for reflux…haha
rene
PS, come visit and we can compare notes, snorkel and eat fish.
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Hi Rene and Ray,
Really interesting conversations going on here – I too, am guilty of wondering if a cold environment/hemisphere contributed to a higher likelihood of developing IPF. This isn’t a theory I read anywhere or anything, just something I often pondered about as I know environmental triggers can cause lung damage in other contexts. Looks like I was wrong as well, Ray! However, I still think moving to where Rene is would be worth it for me, haha!
What is your care like there Rene, are there many PF/respiratory specialists there? Curious how they are approaching the treatment of IPF, although likely following the bigger centres lead in terms of prescribing anti-fibrotics, oxygen, etc. Hopefully you’re really happy with your care and I am glad to hear of your connect in NY, that will be interesting to see what is revealed in the upcoming year about the management of this disease. Hopefully it is good news for all of us!
I want to take you up on the offer of coming to visit Rene – I’ve never been to the Caribbean and have always wanted to go! Plus, I love sun, sand, seafood and my favourite place in the whole world is the ocean! Actually, just today I was looking at all-inclusive vacations to get out of the Canadian cold winters.
Chat with you both soon, and Happy New Year.
Charlene.
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Happy New Year Everybody!
A quick tip for wedge users when travelling: I ask the hotel to provide 2 extra pillows then I put one under my shoulders and 2 under my head. It really works and in fact one is less likely to slip down the wedge. I also sleep on my left side which puts the top of the stomach an inch or so higher because of the way it lies in the chest.
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Hi Brian,
Thanks so much for your message, and for sharing a few of these tips on the forum. I actually never really thought about the things I could do while travelling to help improve my sleep, especially when I don’t have access to the bedding/pillows in the comfort of home. Asking for extra pillows is an easy but likely effective way to help me with this!
Thanks for sharing and happy new year to you as well. I hope 2019 is great for you!
Charlene.
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Another tip for travel, I bought an inflatable wedge pillow, which has minimum volume in the suitcase when not inflated. Inflating it by mouth is not hard, even for our scarred lungs. It can be used the normal way or be put underneath the mattress, raising the head area by some 6 inches.
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Hi Rene,
Thank you so much for sharing this information. Can I ask where you purchased it? Was it on Amazon? I see they have them for much cheaper than I thought actually, which is great. A good idea for those of us who like to travel!
Cheers,
Charlene.
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Hi Rene,
Yes, moving to a warmer climate would be too late for me now if it could help and would be useless at my age. If you have been there for 42 years and it didn’t help, my 83-years (84 in Feb) wouldn’t help if I did it for 42 years more. Just thinking positive again! I’d probably have a hard time breathing well by then anyway.
Just thinking about eating all that good fresh seafood makes me wish to try it though. I love any kind of seafood but I live in Idaho and the only seafood we get is frozen or at a Fast Food or Red Lobster. Even then it isn’t very good.
I was kind-of a gourmet cook at home before I got the frozen stomach from a botched Hiatal Hernia/ Nissen Fundal Plication surgery in 2011. I now have a straight shot for the acid to flow from my lips to my stomach. My stomach can only hold about a cup of food per day and I get my liquid food at night through a J-Tube, an IV type feeding tube that goes into my small intestine. It takes about 12 hours to take all the liquid through the tube. I still like to cook when I see a good recipe so I put off eating anything earlier so I can try some of it when I am done. With this IPF, by the time I have prepared it I feel exhausted and a little nauseated so I can’t eat. Sometimes I eat a little the next day but it just doesn’t’ taste the same. I cooked a good Thanksgiving dinner a year ago and it was 2 days before I could even try it. Everyone said it was good though.
My Pulmonologist told me he felt my about 57 years with acid reflux problems is what caused my IPF also. I have had almost 5 different surgeries trying to make the Fundal Plication work. The last one in 2011 at MAYO Clinic in Phoenix, Az. All to no avail. The only one I haven’t tried is a beaded elastic type band that goes around the esophagus and expands when you swallow and closes after the esophagus contractions stop. That is supposed to work, but the reviews I have read about it don’t sound very convincing. Swallowing through my esophagus is kind of spasmatic and I have trouble getting food to go down anyway. My gag reflexes seem overreactive which doesn’t help with my nausea problems as well.
I didn’t mean to go on and on about my problems. Guess this is all a person has to talk about when we get older.
Thanks for the invite to come and visit you to compare notes, eat fish, and snorkel. The first 2 sound good but snorkeling, I can’t get in the water with this J-Tube and a bandage covering it. I guess they make plastic patches that could cover it but I’m sure they cost a lot.
I didn’t drink too much champagne last night. It sounded good though and I have hated to refrain for years. I just watched them drink them on TV. My doctors tell me not to drink alcohol as it causes more acid and conflicts with some of the meds I am taking. I do sneak a sip of someone’s drink occasionally. Don’t tell! I hope you celebrated and tried a little of it?
Enjoy the rest of the New Year day.
Ray King
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Thanks, Brian, for your comment on wedge pillows and traveling.
Yes, it is always good to ask the motels/hotels for extra pillows if they don’t already have them in the rooms. Trying to sleep tilted to the left side is what my Gastroenterologist advised me too. The hard part is I must have a minimum rise of 30-degrees upper body elevation and it is hard to lie on your left side with that kind of tilt. The body doesn’t bend in that direction very well. For almost 7 years now, I have had to sleep on my back. Good advice though if you don’t sleep with much upper body elevated.
Have a good Happy New Year!
Ray King
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Hi everyone,
I’m brand new, have read all your posts, and boy, can I relate! I’ve had awful GERD for 35 years, and for many years just took lots of Tums. Finally had to see a doctor and was on Nexium for years. Got a Sleep Number bed, which is wonderful – I wish everyone could get one. They gave us a good payment plan so we could afford it. I’ve tried to eat supper early in the evening, and no evening snacking, but still have trouble with indigestion about 3 times a week, accompanied by lots of dry coughing and vomiting of supper. I have dry coughing frequently and aspiration of acid. I have an upper endoscopy scheduled next week and there’s talk of surgery for a lg. hiatal hernia. I just had a HRCT and PFT and had a followup with my pulmonologist 2 days after Christmas. She said the CT had changed very little and the PFTs were essentially the same as the ones done about 10 years ago. She asked me if I knew what had damaged my lungs so much back then and I told that lupus had attacked my lungs when I had pneumonia and I had almost died – I was given 3 IV chemo treatments of Cytoxan and then put on oral Cytoxan. Never once in all these years has pulmonary fibrosis been mentioned. COPD is on all my medical records. She said “There’s no evidence of COPD on your tests. What you have is infiltrative pulmonary fibrosis.” We talked awhile and of course I’m looking up all kinds of info. What I really don’t understand is how this could have started 10 or so years ago and I’ve been on oxygen for about that long (supposedly for COPD) and my breathing isn’ t really that different? My arthritis is! I just don’t understand.
Thank you all for listening!
Pat
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Hi Pat,
Thanks so much for contributing to this topic thread – it sure is a popular one among our forum community, although I sure wish no one had to deal with GERD/acid reflux. Sorry to hear you’ve been dealing with it for 35 years!
Do you find anything in particular contributes to the indigestion on the 3 days a week you experience it? That must be so uncomfortable for you. I am really glad to hear that your PFT and HRCT remain unchanged over the past several years, that is really good news in terms of the IPF management. Do they think the surgery will reduce the amount of GERD or indigestion you experience as well? Hopefully so!
Interesting (although frustrating I am sure) that you’ve been on oxygen for the management of COPD for so long, but now being told you actually don’t have that, but instead a type of PF. There is a lot of literature linked to acid reflux/GERD and IPF. Has your doctor indicated that they think you’ve had the PF for 10 years? It seems a long time to have a stable disease, but that is good news if indeed it is your case. It is such a hard disease to navigate, isn’t it? Are you seen by a centre of excellence for the treatment/management of PF? They might be able to give you more answers and increase your understanding of the disease. 🙂
Take care and feel free to write anytime. There are wonderful people on this forum who will help whenever they can.
Cheers,
Charlene.
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Hi Ray, what a sad story it is, your IV , J tube, the operation misfortunes…I feel really bad for you. And I can just imagine, your being such a good cook, how sad it is that you cannot enjoy your own meals, not even your famous Idaho patatoes. Well the others enjoy your food, so that cooking is your good deed.
Any ideas why your Fundoplication did not work? Just botched each time? One would think that at the Mayo Clinic they know what they are doing. I had just one Fundoplication which failed and doctors do not recommend to do it again in fear of further complications. My reflux was not cured and damage to stomach and sphincter nerves give me nausea and vomiting about once every 10 days.
I visited Idaho to go skiing at Sun Valley where I once went up in the chair lift sitting next to Clint Eastwood and entering a hotel lobby I met with Buzz Aldrin, the no. 2 on the moon, who I had met earlier as I took him diving on a Windjammer wreck off our Bonaire coast. Before IPF I used to go skiing twice a year, your winter in the US or Europe and in your summer in Argentina or Chile.
OK, one could say that living in a warm climate and eating lots of seafood did not prevent me from getting IPF. On the other hand my doctor tells me had I not lived here it could have been a lot worse. So, the invitation stands!
Stay well and have a great weekend,
rene
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Hi Pat,
Sorry I didn’t comment on your Jan 3 post right away. When I got around to reading the forum items, it was late and I had a project I had to get done right away.
I know what you have been going through with the acid reflux problems as you have probably read some of my posts from earlier above. It seems like I have been on the Nexium, its generics and all kinds of antacids forever. Each time I think I have found something that works, I find out it has just been a lull in it getting into the esophagus at night. After following several Doctors, Gastroenterologists, Dietitians and Surgeons suggestions on how to remedy it, it seemed to always come back. The latest thing I have been trying since September is chewing 2 EsophaCool tablets at night with a sip or two of water to help wash it down when I go to bed. When you chew them they immediately powderize so you need the water to swallow them. So far, (fingers crossed) I have only had a couple of nights when I thought I might be getting some acid in my esophagus but it didn’t burn so I’m not sure if it was actually acid or just some of the acid discharge from my stomach. I took a sip of water and was able to go right back to sleep. I can’t guarantee that it really works but it sure seems to work for me. I had ordered 1 60 tablet bottle to try them out and before they ran out I ordered 2 more bottles. I am on the last of the 2 last bottles so I just ordered 4 more bottles. If you should like to try them, I just looked and they are Super Sale Price: $8.10 with free shipping. They go up and down in price I noticed. I paid a little over $6 a bottle but got a quantity discount. They are normally $9.00 at LifeExtensions and $12 at Amazon. You might try them to see if they work for you. A Gastrologist that diagnosed my ring ulcer on my esophagus told me her husband had the same problem that I have and wrote down the item name for me.
I looked them up with Google and ordered them from here: https://www.lifeextension.com/Vitamins-Supplements/item02033/EsophaCool
They are a lot cheaper than some of the other antacid things I have tried. No guarantee they will work but they don’t cost a lot to try. They have some DGL(Licorice) taste but not too strong along with Calcium, Magnesium and a lot other items in them. If you don’t like the hint of a licorice taste, you may not like them. They do have them with a different flavor. Maalox and other Antacids have magnesium in them too. I have read on the Internet that black licorice is used as an antacid too. Anyway, just thought I’d give you the information. If you try them, post how they work for you.
I see you have tried most of the recommendations the reduce reflux. I too don’t eat anything very late in the afternoon and especially near bedtime. I also found that Chocolate seems to cause some later problems no matter when I have eaten it. They also say to not eat many fatty foods or course foods and to chew all food really well. I envy your sleeping on a Sleep Number Bed. When I went to visit my daughter, she gave us her bed for a few days we were there. I was afraid that I would tend to slide down in it when I elevated the head and there was no foot raising ability but I guess I sank into the mattress pad far enough that I didn’t slide that I remember. I just slept well. My mattress is memory foam and I don’t sink into it very far.
As per your cough causing the acid to come up and causes the vomiting, I was having those problems and with a lot of chest pains too. After I finally got the dry cough problem settled the chest pains went away and I vomited very often since. I think the fluid from my stomach getting into my esophagus from my deep coughing caused me to gag and vomit. The doctor told me the chest pains were caused from sore chest muscles from all the hard coughing. I am taking NORCO (Acetaminophen & Hydrocodone) during the daytime and that has completely stopped the dry coughing and no more chest pains and vomiting. I vomit only very seldom. I guess the codeine stopped the coughing and vomiting and the Acetaminophen part stopped the chest pains. Anyway, that has worked since last May or June.
I hope, if your doctor decides on a Hiatal Hernia/Fundal Plication operation, it works out well for you. Sometimes they work and sometimes they don’t. I’ve talked to a lot of people that have had them and swear by them. Others just swear a lot. I have had 4 of them, one at MAYO CLINIC and no luck. I’m sure that the one that caused the later problems was that he wasn’t a very careful surgeon and damaged my stomach functions. That’s another long story I have told on the Forum at various places so I won’t drag this on here.
Good luck with whatever you try and keep us posted. There are a lot of good people on this forum with advice and stories that help to let you know you are not alone. Charlene Marshall gives good advice and counsel. She seems to know a lot about almost everything that can go wrong.
Ray King
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Hi Ray,
I hope this note finds you doing well, and that you had a nice weekend 🙂
I just wanted to express my gratitude for the time and energy I know it takes to add a thorough reply to the forum, and your notes to Rene and Pat were so well done and very informative. Kudos to you, as I know its not always easy but so many of us appreciate your contributions and kind words. We’re so thankful you’re part of our community.
Cheers,
Charlene.
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Hi Rene,
About why the Fundoplication did not work. Stand by for a long story.
The first one I had back in 1973 worked well. I was getting a lot of acid problems prior to it and taking a lot of antacids to try to take care of it prior to the operation. Spicy foods raised a big problem and I had to refrain from any of them. After the surgery, I could eat anything again. Then in the spring of 2011, I had a hiatal hernia (Fundoplication) surgery again. More reflux. The doctor that did it was supposed to be good at it and had just completed training on doing them by Laparoscopy surgery so it was going to be a simple one. Well, the day of my surgery was delayed during that day because the doctor had to do a couple of emergency surgeries. He ended up doing 5 that day. When he got to me, it was very late in the afternoon and rather than having me come back another day, he went ahead and did mine. He was in a hurry because he had plans to take off for Spring Break with his family. The Laparoscopy surgery didn’t go well so he ended up opening me up to do it. That also went slowly because I had scar tissue from the old 1973 operation for him to scrape away. During that process, he evidently cut the nerves to my stomach. He finished the operation at around 9 PM. Then after the first or second day, while I was in recovery, they discovered that while he was in there, he had puncher my esophagus and he had cut me open again to go in and repair the esophagus.
I then had to go from the recovery section to a rehab unit where I stayed for about 30 days with tubes inserted thru my nose to my stomach and other, I had tubes in my belly to keep the esophagus dry so it would heal. That is also when they inserted the J-Tube to try to feed me. Then I went from the hospital rehab unit a private rehab facility where I spent another 30 days to try to build up the 35 lbs. I had lost. That is when they determined I had Gastroparesis (a frozen stomach). I also got a pulmonary embolism while there and went to the hospital for a couple of days to get that dissolved. After I got home for a couple of days, I had a heart attack. They assumed it was brought on due to the stress of all the surgery.
At that time, I couldn’t even sip an ounce of water without vomiting and then my Gastroenterologist suggested I go to a large hospital in Utah or Seattle Washington or MAYO Clinic to see if they could help me. I elected MAYO Clinic in Phoenix AZ. They had me come down and ran tests on me for 12 days. They told me they would try to redo the Fundal Plication again to try to tighten the stomach wrap to help form the sphincter valve so I could try to eat something. I had to wait for about 4 months because of the heart attack I had. Four months later I went to MAYO again and they did the Laparoscopy operation. They spent almost 5 hours and said it took so long because of all the scar tissue they had to scrape away.
14 days later, I went home again. I could drink a couple of ounces of water but no food without vomiting. That is when an atomic food stomach processing test showed my stomach was 80 percent frozen. So now, I have the J-Tube for feeding and taking medicines for the rest of my life. Sometimes I can eat about 1 cup of food a day. After they cut the stomach muscle nerves, your stomach just shrivels up and won’t stretch to handle a volume of food and it doesn’t process food very fast. Mine is 80% slower.
Result: I still have acid reflux problems so sometimes it doesn’t pay to get the Hiatal Hernia operations and sometimes some people swear how it helped them. It’s all just a chance you must decide if you want to take.
After talking to a lot of Law Firms about the botched surgery, they all told me that there is always a risk you take with any surgery so that’s just the way it goes. That is why the hospital and doctors have you sign a form before any surgery stating they are not responsible for failures.
Yes, Sun Valley is a beautiful spot with good skiing. Sorry, you can’t go skiing anymore but I know what you mean. With this IPF, I couldn’t ski either, no stamina. The last time I ever skied was in Garmisch Germany in 1955.
A lot of Movie Stars: Demi Moore, Ashton Kutcher, and Bruce Willis have purchased a lot of lands there and built some big houses. I see Clint Eastwood is looking into locating here in Idaho too. I read not long ago that Idaho was the fastest growing state in the Nation. It was nice when there weren’t so many people here though. They buy up the land and fence it off so you can’t get to the nice recreation spots anymore.
My wife and I spent our 4-day Honeymoon in Sun Valley. I was born in Twin Falls, ID (about 135 miles South) and have spent a lot of my time in that area. There is a lot of good fishing around the area and things to do. I remember when I was just about 6 years old my aunt would take me to her home just about a mile from there for a couple of weeks. I remember well the silver-oar buckets that would travel on elevated cables up that Wood River Valley. It looked like a big snow lift but a lot of larger cars and traveled for miles. There are a lot of old pictures of them in the stores and in the Sun Valley Lodge.
Thanks for the continued invite to come to the warm country. Sounds fun especially when we have the cold weather and the forecast is for 2-5 inches more this weekend. I noted Charlene Marshall had commented that she would like to go to that warm area also.
I guess I’d better close as this is getting quite long and started to not give many people any more acid reflux problem helps and results.
I love to hear from you and enjoy your posts.
Ray King
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Hi Ray,
Thank you for your long response – yes I’m unfortunately aware of no late dinners and no chocolate! Also no peanut butter fudge! My GI doctor started me on Gaxalant and prescription-strength Zantac which seems to have helped. The only problem is that I take the Zantac at bedtime and if my stomach decides to give the old heave ho, there go the meds. I haven’t heard one person say good things about that fundoplication surgery so I think I’ll pass on that one. (even though the surgeon was in my oldest son’s Boy Scout troop!). I have so many questions about this new diagnosis of PF – I can’t wait 6months till my next pulmonologist appt. Thank you so much for sharing with me, Ray. Pat
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Hi Pat,
I am so glad you’ve found your way around the forums and are now able to navigate contributing to discussions – we’re glad to have you! I remember the feeling of being filled with questions pertaining to your new diagnosis, so please don’t ever hesitate to reach out. If we don’t know the answer on this site, we’re pretty good at helping you find it. We’re all in this together!
I hope you had a nice weekend.
Charlene.
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Hi Ray,
many thanks for your extensive, detailed response which will certainly be very helpful for me and many of us. Amazing what you have gone through…plus the horrible effects of an operation from a tired doctor that never should have taken place that day.
Not sure what silver oared buckets are….
There seem to be a lot of unsuccessful Fundoplications and it may be useful to ask in this forum if there are others that had positive results . That may help others decide whether or not to have the operation. Despite my failed Fundoplication doctors do not recommend to have another one, despite my continuing reflux.
all the best
rene
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I had many years of acid reflux / gerd and was on the maximum dose of Prilosec. In January, 2016 I was recommended to have surgery. I discovered a new treatment involving a magnetic reinforcing band around the esophageal sphincter. It is called LINX. Dr. Richards in U South Alabama performed the surgery along with a hiatal hernia repair. I was released the next day on a regular diet and have not had a PPI since. It is an alternate to the Nisan surgery. The only concern is that you cannot have a high strength MRI in the future which would damage the magnets.
I have advanced IPF which I believe is due in part to GERD.-
Hi Charles,
Nice to hear from you – thanks so much for contributing to this ever-popular topic thread. It’s always so nice when folks can share their experience and relate to one another, and I know the information you shared will be helpful for many others too. Interesting to hear about the LINX procedure! Was it relatively new in 2016 then and gaining ‘ground’ now in terms of the number of physicians who will perform it? I wonder if anyone else on the forum has heard of it? It seems to have gone really well and been quite effective for you, which is wonderful!
Thanks again for sharing, and wishing you all the best in the upcoming year!
Charlene.
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Hi Rene,
I had a good experience with a Fundoplication in 1973 that lasted clear until 2011 before I had the bad one. I’m sure there are a lot of people that had good experiences too but those are the people that don’t complain or write about them. I have no idea what the statistics are both ways. If your doctor suggests you have one, it might be worth the try.
I do see that Charles Whittington made a post about a new LINX procedure where a magnetic beaded band is wrapped around the esophageal sphincter area. When you swallow, the esophagus muscle pushes the food thru the band to the stomach and it contracts when the food passes to stop the acid to flow back to the esophagus. The doctor that performed my botched Nissen Fundoplication procedure advertises that he is the only doctor in the area that is certified to do that LINX surgery.
I investigated it even after the bobo that I had from that him before. I asked my Gastroenterologist about it and he told me I wasn’t really a candidate for LINX because I have some problems swallowing anyway and mainly, that my sphincter muscle doesn’t work period. The LINX just aids the sphincter muscle action so it must be working a little. The good thing about the LINX is, they can do it Laparoscopically over the Nissen Fundoplication procedure which is done by open surgery. The LINX procedure though costs about one-and-one-half times what the Fundoplication costs but are faster.
I am not an expert about what I am telling you so I’d better stop it. I am just relating what I remember I had read about it. It’s best you get some expert advice from your doctor. Good luck in whatever you decide.
About the silver oar buckets near Sun Valley, I told you about. I just did a Google on them and spent over an hour trying to find a picture I could refer you to. I couldn’t believe I couldn’t find anything on them anywhere. I guess the next time I go to the Sun Valley area, I’ll take some pictures of their posted pictures and send them to you. It was in the early 1940s that I saw them myself visually and in the 80s that I saw the pictures in the stores.
This is starting to get long again so I’ll close.
Ray King
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Hi Ray!
It’s been awhile – I hope you’re doing well!
I know your reply was to Rene, but I just wanted to write and say thanks for more information on the LINX procedure. I’d asked Charles a bit more about it in my reply to him but hadn’t read your post yet, so it did inform me a little as well. Stinks that you weren’t a candidate for it, it does sound like it has been an effective resolution for Charles. I wonder if more doctors are certified to do the procedure now, as I can’t imagine that doctor that botched your procedure being the only one to do it if it is that effective. Hopefully others have been trained in it too by now 🙂
I still owe you and Paula an email reply, I’ll hopefully get to that tonight as I am working my way through my emails slowly…
Chat soon,
Charlene.
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Hi Charles Whittington,
Thanks for the info about the LINX procedure.
I have read on and investigated it. It sounds good but I am not a candidate for it. I have posted why I couldn’t use it in the above post to Rene. If you are interested, you can see my explanation to her there.
It is possible that you GERD caused the IPF. My acid reflux has been a problem for me for over 50 years and my Pulmonologist assumes that is what caused mine also.
I am happy that the LINX surgery solved your GERD problems. Maybe you won’t have to have an MRI to check the progress of the IPF. They have other methods for that.
Good luck with the IPF. Are you taking any Esbriet or Ofev to help prolong it?
Ray King
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