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Melissa McKenzie
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Hello!
This new member is happy to have found this group! I am very interested in the cold laser therapy issue and have read all of the posts regarding this potential treatment. My IPF was discovered when I went to the emergency room in 2014 for what I thought was asthma. Turned out I was in Afib and spent 4 days in the ICU to figure out which meds were needed to better control my heart rate. A routine chest X-ray showed some abnormalities – there initially was a conflicting diagnosis of a either a respiratory infection or interstitial lung disease. IFP is now my diagnosis. I believe I had symptoms as far back as 2008. My plan is to find someone near where I live who is able to perform cold laser therapy.I live in Groton, Massachusetts and would also be willing to participate in any study!
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Hi Charlene –
I was hoping to respond back to you earlier but unfortunately,I tend to be a procrastinator by nature!
Regarding teaching, I have Masters in Intensive Special Needs and my students presented with a variety of physical/cognitive challenges. I had a lot of staffing so despite the IPF diagnosis, I was able to work with few issues. I was fortunate to be able to have my health insurance covered by the school upon retirement and so I decided to stop working and concentrate on my health. The only possible drawback has been in terms of physical activity levels. I was more disciplined about getting out and moving about for obvious reasons when working and have become more of a slug since being able to stay home and that has impacted my breathing to some degree. Being “deconditioned” is not our friend! So, rehab is helping for sure and I learned the hard way that I need to keep moving.
Thanks to Dr. Hall,I am seeing a local chiropractor who took it upon herself to reach out to Dr. Hall before she started treating me. I had my first session on Wednesday and will go back for a second one tomorrow. She also did some spinal manipulation after as she found me to have some tightness in the upper back which is often related to people who have lung issues. I have a small tattoo on by upper right shoulder which she was initially concerned about because the treatment over a tattoo can produce a burning sensation. I told her to go ahead anyway and the good news is, with the exception of a slight warmth, everything was good.
I joined a Facebook page a few weeks ago called Westie Lung Disease – IPF in USA. I initially came across the study while doing a treatment search for IPF and from there I was able to find your section on laser studies. Yesterday while I was waiting for rehab to start, I took a look at the Facebook page and was excited to find posts regarding Dr, Hall and his work with human IPF patients. This is another avenue for us to exchange information to help find a cure for this terrible disease. The posts regarding Dr. Hall were very well received by the group’s followers.
I hope all is well with you!
Melissa
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Hi Steve –
I make notations of all the supplements,etc., that you post so I can research them to see if they might work for me. I am on several heart meds and I know you know such information needs to be taken into consideration before we try them.
The Facebook group I joined is called Westie Lung Disease – IPF in USA. Several members (humans with the disease) have recently posted about Dr Hall and there has been very positive feedback.
I was impressed with the chiropractor I saw on Wednesday – she had already initiated contact with Dr. Hall. The laser procedure itself produced some slight warmth in the targeted areas. She also did some work on some tight areas on my upper back which she finds is typical of people with breathing issues. I go back tomorrow.
I am not looking for any changes after one treatment but as time goes on, I hope to see some changes in my O2 levels/overall breathing. Even a slight change would be most welcome!
Thank you for all the info you are posting!
Melissa
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Hi Steve –
I totally agree with researching IPF and trying anything we might think will be of help. We advocate for ourselves and share information to others when we can. I just started pulmonary rehab and go twice a week. I also will have my first laser treatment tomorrow, weather permitting. It is snowing in Massachusetts with ice to follow. I recently joined a Facebook page devoted to West Highland terriers with lung disease. Many of the treatments are similar to ours and they have been doing the laser therapy treatment for PF for a number of years as you probably know. Whether dog or human we all share similar diseases and definitely have most of the same body parts! I have been reading your posts and am certainly interested in the treatments/meds/supplements and so forth that you are trying. We have to keep the research moving forward!
Melissa
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Hi Steve-
Love the story! I am thinking I should invest in something motorized! Would be great for yard work, but then again, I can use my ride on mower! It is not just for cutting the grass – motor over to one flower bed, clean it up and on to the next.Would also be helpful with yard decorating for the holidays – just throw decorations in the cart and set them up where needed. I would consider a hoverboard but my coordination leaves a lot to be desired. We survive with creativity and a definite sense of humor!
Melissa
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Hello Charlene-
I am indeed happy to be a member of this group! You provide hope as well as a wealth of information and I look forward to all new publications. I retired from teaching a year ago so I could concentrate on my health. Being short of breath with simple exertion pretty much sucks for us – hope the word “sucks” isn’t offensive! We make adaptations to keep as normal a life as possible. For example, I have a stool on wheels so I can move around the house without getting too winded. I walk when I can to accomplish tasks but when walking proves too much, I have wheels! I started pulmonary rehab last week and we will see how that goes. Many thanks for accepting me into this group!
Melissa
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Andy,
Thank you for your quick reply! I will make phone calls tomorrow to both. I have remained in NSR since July thanks to Dofetilide and a cardioversion. My cardiologist was hoping it would make a difference in my shortness of breath but unfortunately it did not. Now my focus is on better lung health and this is a promising start! I am both hopeful as well as excited!
Melissa