- This topic has 19 replies, 7 voices, and was last updated 2 years, 1 month ago by sally williams.
April 6, 2021 at 4:27 pm #27982
I am diagnosed with IPF in January 2021 and started taking Ofer in March; so far tolerating it well. I am not on Oxygen. I walk regularly and can see that my pace is decreasing to keep the Oxygen saturation above 98.I would like to know what else I need to do other than of every to minimize my symptoms and increase lung efficiency. I read that recently FDA has approved Tyvaso which can increase e exercise quality in IPF patients. Has anyone tried or planning to try this? I read about Wei institute; does that really help? What about pulmonary rehabilitation? Is that useful? Sorry I am new to this disease and have so many questions. I am 48 and my mother also had IPF
April 6, 2021 at 4:28 pm #27983
Sorry to keep the oxygen saturation above 88
April 6, 2021 at 7:03 pm #27986
Hi @sree, welcome to the PF forums. You have a lot of good questions, which you should never feel the need to apologize for. That’s what we’re here for! You can find information on by using the search function on the forum’s homepage (top right). People have been discussing the Wei institute recently, check out the linked topic.
And the short answer to the rehab question is, yes! That does help. You may need a prescription from your doctor to get connected with a rehab therapist, but in the meantime, there are many resources to help you learn rehab breathing exercises available online. People have discussed rehab at length in the forums here too (try out that search bar 🙂 ). Regular exercise is important, so keep walking as much as you can.
Based on a quick search I see that @6yearvet Ben has used the TYVASO treatment and may be able to answer some questions for you.
Let me or @charlene-marshall know if you need help using the forums.
April 6, 2021 at 7:17 pm #27988Ben RobinsonParticipant
Tyvaso is for PH pulmonary hypertension. I have type 3 lungs. The internal alveoli of the Lung are little package units with the small blood vessels and capillaries which also become badly damaged with the fibrosis. They become inflamed and narrowed and then hardened in that narrowed state. Tyvaso I use is an Vasolodator inhaler and it cost $15,000 per month It opens up the narrowed veins so that the right side heart doesn’t have to work so hard. PH makes you unable to walk very far when when your saturation levels are satisfactory. A shortness of breath. Worse than the lung disease itself
Rehab is a must. For interstitial it is every other day and recover the next. I hope this helps.
Ben 6 year Vet supposed to die in 2 but research helps me get here. This is a great forum thank you.
April 6, 2021 at 9:05 pm #27992
Thank you very much for your reply. I am surprised at the cost of Tyvaso. Isnt it covered by the insurance?
April 7, 2021 at 7:28 am #27994MarianneParticipant
Pulmonary rehab is excellent. My doctor prescribed it and it was covered by my insurance. I am in the US. I believe I was on Medicare at the time. My prescription was 3 times a week for 8 weeks. Part of the class was learning about the various lung diseases and the other half was exercise. We basically worked on treadmill, arm machine, bicycle, elliptical and did stretching exercises with light bands and lifted light weights – 1 to 8 lbs. each. My class had various aged people from 30’s through in the class. Some had IPF, COPD, cancer and other lung diseases. Some were on oxygen and some were not. Everyone in my class improved their health. Some entered class on oxygen and left not needing oxygen. Some people went to rehab a few times – lung and heart issues plus after transplant surgery. Many times you don’t know which disease the others have. I know that another man and I had IPF. He was on oxygen and on the transplant list. I know because one of the nurses told me to talk to Frank because he and I both had IPF. I was able to take the rehab classes at the same place where my doctor is located. Hope this helps.
April 7, 2021 at 8:32 am #27995
Thanks for you reply Marianne. This is really helpful. I will also ask my doctor about the pulmonary rehabilitation
April 7, 2021 at 8:58 pm #28003
What is the criteria for lung transplant? Do we have to be really sick to qualify for that?
April 7, 2021 at 9:10 pm #28004Ben RobinsonParticipant
Yes the insurance pays the $15000 per month because luckily I kept my good full work care first insurance as a backup to Medicare.
your pulmonologist will recommend you for a transplant when you are at that stage. There is a long evaluation and acceptance process which I am in now. Don’t do it until you are really bad like on full oxygen and maybe even a wheel chair stage. Get accepted then wait and anticipate 4 months out that you will be in clear need.
April 8, 2021 at 6:24 pm #28011
@sree The criteria may differ some from location to location, but this page gives you an overview of the eligibility requirements at the hospital where my mom had her transplant. The basic rule is that the patient must be sick enough to need a transplant in order to survive (expected to survive less than two years), but healthy enough to survive the surgery and recovery.
There are many other factors that they consider and tests that they run to determine if you are a candidate. You must be medically compliant, have a caregiver lined up, be psychologically stable enough to handle it, etc. in addition to being physically in the right kind of shape to get a transplant and survive.
Once they work up all of that information, they enter it into a calculator that gives you a score that correlates to your needs. This score (LAS, lung allocation score) changes as your health does, and determines where you fall on the transplant list.
April 8, 2021 at 6:29 pm #28012
April 8, 2021 at 6:30 pm #28013
Best of luck with your transplant process . Will there be any IPF symptoms post transplant?
April 12, 2021 at 11:13 am #28030Denis RyanParticipant
Hi Christie, I have the IPF for 3 years now. I’m 80 years old. My consultant tells me (Dublin, Ireland) that I will not get a place on the transplant listing as I am over 70 years of age (maybe due to lack of donors). I am in good health & taking Ofev @ 100 mgs twice per day and have little of the side affects of same. I take rehab. exercises 3 times a week (via online) and walk around my neighbourhood the other days of the week and that seems to suit me. I was listening to a top consultant here in Dublin recently (Zoom) and she stated that 50% of transplants survive the 5 years mark which seems a little better than your mention of 2 years. I suppose a lot depends on the individual/patient/age etc. I find this website excellent for the variety of questions and the many suggestions that contributors provide. Keep up the good work. Denis
April 12, 2021 at 8:42 pm #28035
Hi Denis @denisryan Thanks for sharing your story. I’m glad that you are taking walks and doing well with rehab and medications.
I think my wording may have been confusing when I said “..sick enough to need a transplant in order to survive (expected to survive less than two years)”. I was talking about factors doctors consider when they are evaluating someone for the transplant list. Prognosis is one of those factors, so to be listed, the person must be expected to survive less than two years without getting a transplant. Ie: they are quite sick already or declining rapidly. If someone is newly diagnosed and/or healthy enough that docs expect them to have a good quality of life for more than two years, they won’t get on the list at that time. I hope that clarifies what I meant. 🙂
You are correct that many people live far longer after transplant than the statistics show. Lung transplantation is relatively new medicine so the data is probably actually better than it looks in terms of the five-year survival rates. That comes from conversations I’ve had with UCSF doctors, I’m not just being optimistic 🙂 I personally know several people who have lived more than five years after transplant and are perfectly healthy.
April 12, 2021 at 8:46 pm #28036
@sree There are no IPF symptoms after a double-lung transplant, as the diseased organs are removed. I am not sure if single-lung transplants are the same, but I know that quality of life improves significantly in both cases. Some related symptoms, like AFIB, might still be present after transplant. There are a number of other issues that can arise because of a transplant and the medications required to keep the new organs healthy and prevent rejection. It is not without risks, but the short answer is that no, IPF will not persist.
April 13, 2021 at 2:52 pm #28044
Thanks Christie. this gives some hope.
April 13, 2021 at 3:49 pm #28046Denis RyanParticipant
Thanks Christie for clarifying the question of the 2 years for me. I’m still learning about this terrible disease.
April 14, 2021 at 7:24 pm #28071steven masonParticipant
Christie–if ipf is genetic based–part of the code–how do we know that the defective code will not attack the new organs?
April 14, 2021 at 8:37 pm #28081
@smason An excellent question Steve, and one to which I do not know the answer. I did a quick search of Google scholar and couldn’t find any research that answers that question either.
If I were to speculate (remember I am not a doctor, just a person who’s tried to learn a lot about this), I would guess that it probably wouldn’t recur in the donor organs because the donor’s lungs would not have the genetic mutation that caused inherited PF in the patient (unless very, very unlucky). The DNA of the transplanted organs does not change to match the DNA of the body in which they now live, so I don’t think they would code for PF based on the body’s genetic mutation.
Again, just my guess, and I’m not an expert. I will definitely keep checking for more research on this topic though as I am interested to know the answer 🙂
April 15, 2021 at 3:23 pm #28086sally williamsParticipant
To Steven and Christie, Anecdotal information. My brother had a kidney transplant due to a hereditary disease. (Polycystic kidney). After 12 years there has been no sign of cysts.
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