Sally
Forum Replies Created
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The right heart Cath does not hurt at all. They strap you down so you don’t move when they put the tiny wire in. I am now on sildenafil as the Tyvaso clinical trial was difficult and made me cough so much more. In order to get sildenafil, or probably other similar meds, I believe a prerequisite is to have the catheter procedure – I had previously had one a couple years ago, so I was able to get it after the info was given to my insurance for verification.
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I have constant nasal congestion and mucous phlegm – coughing and nose blowing. As someone else said, I have a box of Kleenex on every surface in my house. I am on Breo, Allegra and have been on Flonase/fluticasone and also use Azelastine when necessary. I went to the ENT for constant stuffiness (pulmo thought I had polyps but scan said no) and she said I had chronic rhinitis caused from oxygen . I have been on it 24/7 for over 3 years. She said to take Afrin with the Flonase morning and night and it won’t cause the rebound if you do it that way. It has been better since I have done that. It did nothing for the coughing up phlegm or blowing my nose with heavy mucous . I have resigned myself to the fact that it is just another symptom of IPF. I’m happy for most of you that don’t have the problem. It is so tiring.
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I was on Nerondomilast, Fibroneer Trial, from July 2023 until last month when it ended. I have been on the “real” drug, high dose, for two weeks. I have been experiencing diarrhea – sometimes bad, sometimes ok. I have taken Imodium which helps. The Trial doc says to just take a preventative 1/2 or whole Immodium in the morning. I also have IBS and one of the reasons I have never been on the other two drugs. I was diagnosed in 2014 and was doing great (no oxygen except for flying or above 2,500 feet) until 3 years ago when I had a major exacerbation and was in the hospital for 2 weeks. Since then, I have been on 24/7 oxygen beginning with 8 lpm, then down to 4 and now at 6lpm. I am pretty positive I was on the placebo or the low dose considering the reactions I am having now. This trial extension is for 96 weeks and then hopefully it will be FDA approved.
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I have had two pulmonologists and my PCP both tell me that the problems the two drugs cause, especially with people (like me) that have IBS or other gastro issues, far outweigh the good that the two drugs do for IPF. It is such a small percentage. I did great for 7 years with IPF until my exacerbation almost three years ago . Now I am on 6LPM of oxygen. Before that my doctor would always say that if I had been on Pirfenidone or Ofev, that bells and whistles would go off because it was doing such a good job of me maintaining good numbers. When, in reality, it was just me with no drugs. Sometimes it’s just not worth the pain or inconvenience of taking the drugs. It’s your choice and either one is a good one. I am currently on a clinical trial, Fibroneer, and have been on a couple of others. I hope one of these new ones shows better results !!
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I have had trouble breathing – totally “stuffy” nose for many months. I have complained to the doctors that when I try to spray something in my nose, most often it just falls back out. Finally, last month my pulmonologist looked in my nose and said “no wonder you can’t breathe – your nose is full of polyps !”……..I can’t have surgery because of having oxygen in my nose, so he has suggested Dupixent. I was turned down the first try, but guess they didn’t have enough info. Dupixent is for allergy, asthma, excema and nose polyps ! It’s a self shot a week. Supposedly it’s $3000/month, but hopefully with medicare and secondary it won’t be that – I will suffer using all the things I use now if it costs that much. I am hoping it all works. I use Ayr in my nose when it gets dried out. My PCP has just ordered a CT of my sinuses, so that will be another piece to the puzzle !
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My two cents……..
If your oxygen is “down to 88-92″…do not worry. You only need to worry if it is below 88. I am sure that causes anxiety when you think it’s too low and you can’t breathe.
If it gets below that when you get up and do something, then it’s a cause for some help. At night when I take my CPAP off to use the bathroom, mine goes down to mid 70’s and it’s only about 50 steps each way. However, it goes right back up when I sit/lay down and get connected to my oxygen and CPAP. My Pulmonary says that’s fine if your LPM comes back up in a short time (a minute maybe ?).
As many have mentioned, you need a walk test to determine if you need oxygen full time and at what LPM. I am at 5LPM or more at any exertion, but only 1-2 when I am sitting.
Pulmonary Rehab would be great. They give you oxygen and check your pulse and oxygen levels while you are exercising. You usually have choice of NuStep machines (I bought one for home use and use it every day for an hour), treadmill or bike…in addition to exercises for your entire body (usually sitting). It would be great for you. Medicare or insurance should foot the bill.
Good luck and hope things get better. Sit and relax if your oxygen levels decrease or your pulse gets high. Take some breaths, pulse breathing, calm thoughts…..
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I am 74-1/2 and was diagnosed when I was almost 65. I was stable (no oxygen unless flying) – meaning out of breath on exertion, etc – until almost two years ago. I had an exacerbation (no known cause) and was in the hospital for 10 days on 240 mg of prednisone and 30 LPM of oxygen !! It took a long time to get back to “normal” but I have been on full time oxygen Ince. I was doing well until January when I had another mini exacerbation but now have bounced back pretty well. My oxygen needs are now 5+LPM on exertion – basically just walking around here- and 1-2 if sitting. If I didn’t have another knee in need of replacement, I would probably try walking more but my oxygen tank only goes to 5LPM Pulse, so not really enough. I use a NuStep machine (one machine they usually always have at Pulmonary Rehab) daily for an hour. I go to PT weekly and do all sorts of exercises related to that. I used to travel a LOT, but can no longer fly due to oxygen requirements. Its’ hard when I have grandkids in Alaska and California . I have just started learning watercolor and I knit a lot. I see friends occasionally but have a lot of alone time which is fine with me. I am happy to be here and feeling OK. And, I have never been on OFEV or Esbriet (mainly due to stomach issues/IBS) and my pulmonologist thinks that is just fine. I am in my third clinical trial so hoping someone along the line gets some help from me doing them !!
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I would be concerned about the mass on your liver and whether or not it could be cancerous. Could they do a non-invasive biopsy on that first? I did have a biopsy in 2014 but it was also (as a couple above) to determine if I had NSIP or IPF. I had been diagnosed with NSIP and the prescriptions for that include prednisone at first and then CellCept or aziathioprine next. I had bad reactions to the aziathioprine – hair falling out and laryngitis . I had IPF determined from the biopsies and two pathologist. Now they say just having an HRCT can determine IPF, although it didn’t for me, and I presume others if they aren’t 100% positive from the HRCT. I am also surprised that a cardiothoracic surgeon turned it down. Basically that is what a transplant surgeon is. I would get at least one more opinion – one that would include effects on the liver and heart if done.
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The Sequal Eclipse goes to 3 continuous, but it does go up to 9 pulse – that can help !!
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Sleeping with the upper body elevated helps with a lot of things…….coughing, GERD, apnea, etc. Please do not just put pillows under your head. This makes you head bow into your chest area and compromises your breathing. A wedge helps, preferably under the mattress. Put the pillows under your shoulder/upper back for maximum help. Of course, the best solution is a bed that with which you can control the upper and lower body elevations. I use the lower body elevated when my PH flares and my legs are swollen. My daughter days I sleep like a taco !!
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Be careful that you don’t take too much zinc as it can be harmful in many ways. My doctor said there has been nothing medically conclusive about zinc. He said when it gets out of mice trials and into some clinical trials, we could see some help. But wait til then ! Zinc can be good in moderation.
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Just an FYI….NO Inogen POC’s go up to 6LPM.. They are settings and not LPM. I have and Eclipse and it goes to 9 LPM on pulse and 3 LPM on continuous. It is heavy but works for me now so that I can travel. I am going to attempt Maui in June. I have two extra batteries and it can plug in if needed, so hopefully OK. I am on 4-5 pulse for walking but not that much sitting. I had an exacerbation in September, and before that I used the Inogen 3 with no problem on the plane. I wasn’t on any oxygen other than that. Here is the comparison chart for POCs. Unfortunately, not all companies tell the truth on the phone !!
https://www.pulmonarypaper.org/portable-oxygen-concentrators-comparison-chart-2021/
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I leave things on the floor until I can get to them to vacuum or vacuum/sweep to get them up. All of my visitors know it’s hard for me to bend, and no one cares. I also have a grabber tool for bigger things. I do have cleaners every two weeks for changing beds (just CAN’T do that), vacuuming and cleaning kitchen and baths thoroughly. I live by myself, so it’s not a lot usually but when company/kids come, then it’s a necessity. I can keep kitchen and bathroom sinks, counters , mirrors and windows clean. I use “Branch Basics”……it is cleaner/detergent that all comes from the same source (different dilutions) and it totally fragrance free and chemical free, and it works and lasts forever !! https://branchbasics.com/collections/starter-kits . I make the cleaning people use it also as I can’t stand the smell of cleaning supplies and they aren’t good for us ! I have two air filters.
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CT scan showed no polyps so I think what the pulmonologist saw was swollen and inflamed Turbinates. I don’t know what else it could be !! I have had two shots of Nucala (alternative to Dupixent and I don’t pay for this). I am still having problems but not as much. Nucala also helps asthma.