Shaw Jennings
Forum Replies Created
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Last week I received my first 3 months supply of 801mg Pirfenidone from Mark Cuban’s Cost Plus pharamacy. The cost was amazing at less than $200 per bottle. The process involed registering on their website, printing out an instructions sheet, which I gave to my doctor, who then submitted my 3 month supply prescription on-line. About 10 days later I recieved my first order.
I don’t understand why they were out of stock. Could it have been due to a limited supply that had just been depleted? I suggest you follow up until they do have it in stock.
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Hi Christie,
I was diagnosed with Gerd about 25 years back and, obviously, long before my IPF diagnosis. I was prescribed several PPIs, which none worked that well so my gastroenterologist recommended the Fundoplication procedure, which I agreed to. Preparation included the manometry test, which established how tight to make the stricture. Probably the most difficult part of the procedure was the liquid diet both before and following surgery. As for results, my Gerd symptoms immediately abated, but after five years slowly returned. In my case, the surgery eventually failed and Gerd symptoms return. I suspect my failure may have something to do with stretching due to overeating.
Over the years I have had five surgeries, which included my Fundoplication. Of the five, the Fundoplication was the easiest and least traumatic. Unfortunately, I have no tips on how to best prepare for pre and post procedure, but after lung transplant surgery I suspect your Mom will not have any significant issues with Fundoplication.
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I am 74 and was diagnosed Oct. 2017. Like just about everyone, I was told the median life expectancy was 3-5 years. Since I had no symptoms and my diagnosis was initially based on a CT scan of my abdomen due to kidney stones, I was told that my condition was caught early. To this day I have not received any prediction on how long I might have.
Aug. 2019 my sister (she was 77) recieved her IPF diagnosis. Six months later she passed. I later found out she had an earlier Enphysema diagnosis due to smoking. Being my sister was an extremely private person, she lived in another state, and we only talked every few months or so, she shared very little about how serious her condition was. I knew she was sick, but I had no idea how sick and that she would pass within 6 months of her IPF diagnosis. I suspect her Enphysema had as much, or even more, to do with her passing than her IPF.
I have no doubt my sister’s doctors told her how grave her condition was and possibly told her how long she might have. I can only imagine that it was much less than the typical 3-5 years.
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All,
I was diagnosed with Hemocrhromatosis in 2015. I immediately started treatments (phlebotomies) to remove stored iron in my body and lower ferritins in my blood. Since my diagnosis, every six months my blood is checked for raised ferritin levels and, when elevated enough, I have another phlebotomy.
I was also diagosed with IPF in 2017. Since my diagnosis neither my Pulmonologist nor my Hematologist have mentioned any correlations between the two health conditions and excess iron. To confirm, both doctors are well aware of all of my health issues.
When I see my Pulmonologist and Hematologist in the next couple of months, I will share this discussion and ask if either of my doctors are aware of increased iron being a problem for IPF patients. I trust and respect both of my doctors, but at this time I am thinking neither of them is aware or possibly they are not concerned.
After considering Charlene’s reference to “iron build up in the lungs driving fibrosis development”, I wonder how many others diagnosed with IPF also have Hemochromatosis. I also wonder, for those of us with IPF, what is a safe level (not too much and not too little) of iron? For now, my Hematolgist is trying to keep my ferritins below 100.
Shaw
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Hi Charlene,
I have not considered the possibility that there may be a correlation between my IPF and nerve pain; nonetheless, I have experienced nerve pain for at least 3 or 4 years. I was first diagnosed with IPF last October. Initially, I thought the nerve pain was due to arthritis in my back, but eventually it was suggested I see a Neurologist who diagnosed me with Peripheral Neuropathy. My nerve pain is mostly in my foreams down to my fingers and below my hips to my feet. I experience a dull aching pain equally in both sides of my body with intermittent shooting pain on either side. The pain is aggravated by standing and walking for extended periods of time.
I was initially prescribed Neurontin, which helped but made me feel uneasy. Then Tromodal which helped, but due to the opioid concern it was suggested I try Nortriptyline and finally Lyrica, neither of which I could tolerate. I have since visited a pain management doctor who strongly suggests I try a Spinal Cord Stimulator, which I am not convinced will work for Neuropathy. For now I accept the pain as part of my life and there isn’t much that can be done other than a hot shower or bath that does give me a few hours of relief. I only hope it does not get worse. OTC pain meds have not helped.
Also, in the past two years I chased a diagnosis for dizziness and nausea, which after seeing multiple doctors and experiencing a wide variety of tests I was diagnosed with diplopia (double vision), which was corrected by adding prisms to my eyeglass prescription. The dizziness and nausea abated immediately. No one can say for sure how I got this nagging condition, but it is suspected that I had a concussion that was caused by a fall in my backyard where I slipped on wet concrete and slammed my head. I did not experience any headaches.
Have your doctors suggested or have you been tested for Neuropathy and possibly have they discussed any of the meds I mentioned?
Shaw
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Update:
I have been taking Esbriet for 4 weeks now and no problems. My second months prescription arrived a few days back and I was surprised that it was (90) 801 mg pills. I checked with the Esbriet nurse, my pharmacy and my doctor and no one knew who made the decision for me to change to the larger brown pills. To my surprise, since I was tolerating (9) 267 mg pills a day for over a week, they all encouraged me to make the change. It’s now been over a week with the larger pills and my good luck has continued. I have to admit (3) pills a day is much more convenient. I encourage anyone that is still on (9) pills – and not having any problems – consider the change.
Shaw
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Hi Charlene,
I can’t help but think that you are pursuing a lung transplant and, if so it’s understandable based on the Stanford study, that you would be very concerned about your need to take iron supplements. I also imagine there must be a way to maintain at least minimum iron levels without creating the study’s referenced aspergillis problem. No doubt you will discuss this with your doctors and possibly keep us posted on their comments.
Recently, I was encouraged to consult with a local lung transplant group, which I hope to do in the next few weeks. At my age, I am thinking that I may be a poor candidate; however, I was told I should at least start the conversation while I am still in a reasonable condition. Your discussion about potential elevated levels of iron have me concerned as I have high levels of feratin (iron) in my system and peridodically must have phlebotomies to bring my levels back into a normal range. Similar to you, I am now concerned that my issue may pose a problem, adding to me being a poor candidate. Nonetheless, I will still explore the possibility and will let you know what I can about our iron issues from our local experts.
Best regards,
Shaw
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Hi All,
The phlegm discussion has me thinking that my allergies are possibly not the total cause for my phlegm buildup. I have had allergies for years, but since last October I have experienced a more serious onset. Mostly runny nose, post nasal drip and cough with some phlegm. Simultaneous to the October flareup I received my first diagnosis of NSIP then IPF. Until reading the latest string of phlegm related messages, I thought it was all or mostly due to allergies – maybe not. I am seeing a new ENT and he has asked me to get a CT scan of my face. I am not sure where he is going, but possibly he will narrow my phlegm diagnosis to allergies, IPF, or a combination of both. In the meantime, I have used a variety of allergy medications – maybe too many. Zirtech, Claritan and Benadryl. Also my nasal sprays include, Dymista and Ipratropium. All have helped to some degree, but none give me more than a few hours of relief.
It seems from all or most of the comments the phlegm is a result of IPF. Maybe I need to reconsider my personal belief that I just have severe allergies.
I also would be very interested in hearing more from Ken Whittaker about his stem cell therapy.
Shaw Jennings
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Hi Charlene,
It’s been over a week since my last post. I have now completed my first 9 days of Esbriet and I have had no side effects other than some very mild queezieness. I have been eating a lot and gaining weight – got to learn to eat less, but still eat enough to buffer my meds. I also saw my pulmonologist yesterday, did well on my 6 mwt with only a mild drop in my 02 levels and my blood gas was still at a normal level. I guess am doing better than I feel, which is probably due more to very bad allergies than the disease. Nonetheless, good news.
I have been considering a purchase of a spirometer I can use at home. Can you or anyone recommend one? The very affordable patientMpower bluethooth unit looks promising.
If you are going to buy a wedge pillow, I recommend you get one that is long as possible. Otherwise, you will find yourself contantly slipping down if it is too steep – at least that was my experience.
Hope you are doing ok,
Shaw
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Hi Aishia,
Thanks for your helpful tips. For now I am eating more food than usual – half a meal, then the pill, then the 2nd half. I am also drinking water. I think that once I get to 9 pills a day, assuming I can tolerate 6 then 9 a day, I will see if I can cut back on food. Your banana and coffee breakfast sounds promising.
Thanks again,
Shaw
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Hi Charlene,
In response to your question about my local support group – the same two people were there. I made three along with the hospital staff that attended. I found out the group started last October so it is still new and just getting started. Surprisingly there are not more IPF attendees. There has to be more of us in the immediate area as there are roughly 2m people in greater Las Vegas.
As I stated in one of my other response, I have now completed my first day of Esbriet and so far all is well.
Shaw
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Hi Charlene,
I think our traveling days are over. In recent years my wife has developed severe food allergies so dining out is always a challenge. Eating food in a foreign country would definitely be even more difficult. Fortunately we were able to travel when we were younger.
The crackling was one of my first symptoms along with the scarring in my lower lobes. Funny that you say you can hear crackling. In December both my wife and I caught the flu and bronchitus. An odd symptom that I never experienced before was a noticeable sound of crackling from my mouth when I exhaled. I too questioned whether it was resonating through my body or was an audible sound. My wife confirmed that it was an audible sound. It has since stopped once I got over my bronchitus.
Good to hear that you are getting some benefit from OFEV. Do you ever wonder if you might do better with Esbriet? Too bad there isn’t some medical process that would allow one to try both in an attempt to find out what works best.
Yes, when I climb our stairs my oximeter indicates a measurable drop. To as low as 88, but it quickly recovers to 94 and if I breath deeply and slowly I can get it up to 97 even 98. I suppose my next 6 minute walk test on the 22nd will confirm if I should start on oxygen. I am hoping not.
As you probably know, I received many responses to my request for tips on how to take Esbriet. They were very helpful. I have now taken 3 pills and no problems. Of course, that could change once I am taking two or even three at a time. I’ll keep you posted on my progress.
Shaw
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Hi Judi,
Glad to hear your husband hasn’t experienced any problems with his meds. Hopefully, losing 10 pounds is a good thing. Also, hoping that his progression has slowed or possibly stopped.
Best regards,
Shaw
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Joyce, Marilyn, Ann, Luciane, Betty, Paul, Tammy and Marlene –
Thank you so much for sharing your experiences with Esbriet – good and bad. They have given me the confidence to begin my treatment this morning. I have now taken two pills, both with full meals. If anything I only sense very minor nausea. I suppose it will take a few days or more for my system to fully respond to the meds so I am not assuming that it will be smooth sailing. At least for now, I am feeling ok. I’ll report back in a few days.
BTW did anyone’s side effects subside after three months?
Thanks again,
Shaw
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Marlene,
I haven’t traveled much since my first diagnosis last October, so I don’t know if or what altitude might cause me breathing difficulties. Hopefully, going forward, 2,000′ won’t pose a problem.
I know I said I didn’t have any symptoms at the time my IPF was first identified, but actually that is not 100% accurate. My doctor characterized my condition as not having systems, but I did have mild crackling, my FVC was 69% (just below low normal), and I did have mild breathing difficulties, which I thought prior to the test, was due to age. As of present, my symptoms don’t seem to have changed; however, I soon may know different as I have an appointment on the 22nd where I will be retested to set a baseline for my Esbriet treatment.
Can you tell me what your oxygen levels were when you first started supplemental oxygen? My levels average around 93/94. They sometime briefly drop below 90 and are as high as 97.
So OFEV is working for you, but there is still progression. Hopefully it has and will continue to make a difference.
Since my diagnosis, I have talked to very few people about about my disease or what I am dealing with. Your support group has changed that, thanks for being there.
Shaw
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Hi Charlene,
My wife and I are in southern Nevada on the far west side of Las Vegas, 15 miles from the strip. The elevation is about 2,000′ so we get only a light dusting of snow every year or so – pretty mild winters.
I’ve had a problem with kidney stones for many years. Early on they would start with extreme nausea, then vomiting immediately followed by intense debilitating pain, which felt like a hot searing ball bearing working its way along the right side of my torso. After many episodes, I no longer get sick and the pain is more like an uncomfortable pressure that starts in my upper back then moves to my front right side towards my bladder. The pain or pressure sometimes is over quickly or sometimes can last for days or even weeks. I no longer go to the hospital when I feel one coming on, so my Urologist keeps an eye on my stones by periodically sending me to the radiologist based on how uncomfortable I get. My CT scan report, that identified my IPF, did state I had “multiple stones” that immediately became insignificant as the focus moved to my lungs. Before the CT scan, I had no idea I had a breathing problem or a possible lung disease.
I was stunned by your admission that you were diagnosed at 28. What devastating news to get at such a young age, I am so sorry. I can understand your anger, yet you seem to be gracefully accepting your fate. Do you mind telling me what medication you are taking and, if so, how long have you been taking it? Also, has your disease progression noticeably slowed or possibly stopped at any time?
I will attend my second support group session tomorrow. It is associated with one of our local Las Vegas hospitals (UMC – University Medical Center). I am assuming, since IPF is such a rare disease, there are only two others with IPF that currently attend the support group. The local Esbriet rep will make a presentation today.
I’ll make a post to the new Esbriet page later today.
Shaw
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Hi All,
I just found this site and registered. I live in Nevada, but I suppose it doesn’t matter where I am as we all have at least one thing in common.
To respond to the diagnosis thread – this past October, I went to the lab for a CT scan expecting to see a few kidney stones. The scan caught the lower lobes of my lungs identifying Subpleural Reticulations and possible NSIP. I then had two more scans (CT and HRCT) of my chest, which confirmed that I had UIP or IPF. I went to UCLA for a second opinion, which cofirmed with 95% certainty of IPF. UCLA does not recommend a lung biopsy for somenone my age.
I guess I am lucky to get a fairly quick (3 mos.) diagnosis as I have been told I don’t seem to have any symptoms other than mild shortness of breath. I was also told that the scarring may have started as early as two or three years back, but it was only a guess.
Since my initial NSIP and possible UIP diagnosis back in October, I have struggled with the shock of hearing I might have a terminal disease that I never heard of until I got my diagnosis. There’s been denial, depression and now optimism as I have joined a local support group and tomorrow I should receive my first prescription of Esbriet, which I am hopeful will slow my progression.
I am now concerned that I won’t be able to tolerate the meds, but I won’t know until I try. Does anyone have experience with Esbriet and, if so, do you have any tips on how to take it with food? I have been told that I must take it with a full meal (breakfast, lunch and dinner), but that is about all I know.
Shaw (first name)