robert-morrison
Forum Replies Created
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Hello Charlene,
Absolutely spectacular pictures of Hawaii. I’m very envious. Someday I have to reread how you made it that far from your home. United requires me to carry enough battery power to cover twice the distance to my destination. I live north of Chicago so if I carry two double batteries for my Imogene One G3, I can only get to the west coast i.e., half way to Hawaii. But I digress… I have used Healthwell Foundation for several years but when I went to renew earlier this month for another year they told me it was closed. Said I had to go elsewhere. I am now working with Boehringer Ingelheim directly to get assistance with the co-pay. Fingers crossed. Enjoy your tropical adventure.
Robert Morrison
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Hi Charlene,
You and I have to be brother and sister from different mothers because our bodies react to IPF the same. First, and foremost, I believe a lot of the muscle pain and cramping is a function of IPF inhibiting the oxygen to those muscles but the cramping is directly related to the medications we take. I have taken both Ofev and Esbriet (actually both now) and feel dehydration is the main problem. I drink copious amounts of water and it seems to almost completely eliminate the leg cramps. I can still get them if I’m on my feet for an extended period of time but water has stopped those middle-of-the-night cramps in my calves. I am likewise concerned with muscle pain but over time I have learned it grows throughout each day. When I get up in the morning I feel almost “normal” except for the connection to my oxygen concentrator. But as the day progresses I become less and less comfortable. I really feel this on Mon, Wed, and Fri as I do pulmonary rehab at 1:00 in the afternoon. Although the exercise is quite tolerable my muscles ache for the rest of those days and evenings. My solution is twofold. First, I do as much of my activity as possible in the mornings and then making it a point to rest in the afternoon. I have learned that many household projects that I used to do in one continuous effort have to be broken down into two or more segments. This is an easy thing to say but I found it really takes discipline to do it. If I ignore my own advice and do a project from beginning to end without stopping I can easily ruin my next two days trying to recover. And my second remedy is ibuprofen. Before my IPF I was an avid golfer and learned that if I took a couple of pills before the round it made a world of difference. Unlike a headache where you take pain relievers when you begin to feel the pain, the anti inflammatory properties of the ibuprofen work well on muscles before the pain begins. Years ago I learned that many of the pro golfers do the same thing in order to walk all the rounds they do in a normal week. I still do have my fair share of muscle pain and certainly understand your struggle, but they things I do really help me to minimize the discomfort. Good luck and God bless.
Robert Morrison
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Hi Mark,
When I was younger and working I made many trips to the Far East most frequently to the Philippines and China. I always seemed to return home with a bronchitis feeling in my lungs. And I mean every trip. My doctor prescribed Nasonex or Flonase nasal spray which I always started two days before the flights and continued on the flight when I could. I didn’t use it overseas but I followed the same routine flying home. It worked perfectly. I even accused my doctor of being a genius, much to her delight. You may find a nasal spray a good preventative step. Good luck and safe travels.
Robert MorrisonPS: When you return I would like to learn about how you lost the weight prior to your transplant. I have a BMI of just over 31 and I am told I need to be around 28. For me that means I have to lose 40+ pounds. Yikes!
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Hi Charlene and other writers on this thread. I am learning this forum is a wonderful source of guidance on the many decisions we make as IPF patients. For me the discussions on one or more lung transplants is extremely helpful. I am 69 years old and except for the fact that I am overweight I think I fit the profile of a worthy transplant person. Because of an extremely bad infection I got after hip replacement surgery 12 years ago, the thought of going back into an OR for more surgery was just not something I ever thought I would consider. But as my IPF progresses and because of a recent exacerbation I started reading up on transplants on-line and in Pulmonary Fibrosis News. While I have come close to deciding transplant is the way I need to go, some new things have caused me again to reconsider. And first and foremost is the old supply and demand dilemma and I would guess based on comments here demand exceeds supply almost everywhere. So I am beginning to question my worthiness to get in the transplant que. If a perfect match lung or lungs became available I am finding it difficult to accept knowing there is someone out there who is not getting lungs when I do. For example, I find great comfort in reading Charlene Marshall’s writings on the aspects of living with IPF. But Charlene is in her 30s and I am almost 70. A new set of lungs could change her life for a long time to come, quite likely adding many more years to her life when it may mean just a few more years for me. I use Charlene as an example only because I know a little about her situation. But I still think there has to be many more folks out there prompting me to question how can I justify accepting a transplant when there are certainly more worthy candidates than me. I am scared to death (pun intended) to think about death by IPF but also afraid to take away someone else’s potential for an improved life. I am curious if anyone else wrestles with this issue and how they make that final decision. Bless you all.
Robert Morrison
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Hi Charlene,
To follow up, I had no other side effects from taking Esbriet other than sun sensitivity. I was a little surprised my doctor allowed me to switch to Ofev. However, when I asked him why he i.e. Northwestern Medicine, chose Esbriet in the first place, he didn’t really know. I think both drugs were relatively new and Northwestern chose the lease expensive of the two (Esbriet). I think if one or the other proves significantly better, that will become everyone’s first choice. The progression of the disease has remained approximately the same for me despite switching medications. For me the decision to switch was purely a “quality of life” decision.
Robert Morrison
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I currently am on 150 mg of Ofev every twelve hours. I was on Esbriet for about 18 months and then switched to Ofev earlier this year. For me the fact that I became very sun sensitive using Esbriet was the motivation to change. I chase the warm weather (and sunshine) during the winter months so being able to spend time in the sun is a must. With Esbriet, for example on a sunny day here in Florida, I had to limit my pool side time to 30 minutes maximum. When I approached my pulmonologist about making the switch he approved the change immediately. He said there was no empirical data demonstrating that one was better than the other. The only side effect with the Ofev is recurring diarrhea, which I manage to control with over the counter medicine for that problem. And I do like the fact that I take one pill every twelve hours and not nine pills spread out over the day in three pill doses.
Robert Morrison