[Lorraine]

Thank you John! After learning about k-laser therapy from you and others on the PF forum, I started treatment on April 3rd and have had 6 treatments thus far.

Also, I have reached out to Dr. Hall, many times and as you know he is very kind and generous with his time!!! THANK YOU DR. HALL.

I expect my next PFT to occur on May 10th and another CT scan soon after and will post an update. And because of you, Dr. Hall and others, I too am dedicated to ongoing treatment.

Ok, given that Laser Acupuncture and LLLT is one in the same …. I have another question, aren’t the lung acupuncture points being treated simultaneously?

[Lorraine]

@let666:

I realize I am late in replying to your 3/14 post, when you wrote …”and in the 2014 Egyptian study they went from 30 meters to 93 meters. This laser acupuncture with low level laser. With such impressive results I am wondering if the laser acupuncture method may be more effective than what we are doing now. Doing both would be too time consuming and costly. Please let me know what you think about this as I imagine when you started your own laser therapy 4 yrs ago you probably did not know about these laser acupuncture studies.”

I just started my treatments two-weeks ago, and noticed the following on my chiropractors website:  “The treatment method is referred to by several names such as Laser Acupuncture, Low-Level Laser Therapy, Soft Laser, Low Power Laser Therapy, and Bio-stimulation.” Perhaps this was already mentioned in this thread, but in case it wasn’t I thought I should share this.

Also, I was wondering if anyone knows what medication the Egyptian study participants were taking?

Thank you,

Lorraine

[Lorraine]

Hi Charlene: I found this topic to be very helpful and look forward to learning about other tips in relation to Independent Living Skills. Thank you.

[Lorraine]

Thank you Charlene and please go back to enjoying Quebec. Sorry to have disturbed your long deserved weekend with your friends.

An online support group might work. I would give it a try — when it becomes available.

Have fun,

Lorraine

 

[Lorraine]

I have probably done this in reverse. As I have blurted out, that I have IPF to acquaintances and what that means. Why? Maybe because I have to downplay my IPF to loved ones, with updates one CT scan at a time, because my parents are in their 80’s and my dad is not doing well. Ironically, I am their caregiver and I feel sad that I might not be able to carry on for them after all they have done for me. Maybe because my ‘friends’ tell me to be positive — when I TRY to discuss IPF with them.

Does anyone know of a telephone talk therapy opportunity? I do need to vent and not feel like I have the plague.

[Lorraine]

Hi Katie: The tea loaf does sound lovely and I am glad it is easy to make. I must try making it at some point. Stay tuned.

[Lorraine]

Hi Charlene:

Yes, giving up coffee has been hard. It took a while for me to stop drinking it. I still enjoy the smell and my IBS doesn’t seem to take offense.

In doing research on the internet, I read to try different coffee brands. I did so without success. I then tried making cold brew. As you may know, cold brew is created by steeping medium-to-coarse ground coffee in room temperature water for 12 hours or longer and then filtering out the grounds for a clean cup without sediment. Unlike regular coffee, cold brew is never exposed to heat. I liked it very much, but it did not like me. I don’t know why, I am nice. Haaa. Tea hasn’t given me a problem, so far.

Basically, I am trying to stay away from: (1) gluten, (2) dairy, (3) processed sugars, (4) alcohol and of course (5) coffee. And given that I am hypothyroid (hashimoto) for about 30 years, this diet or avoidance seems to work and for IPF too. HOWEVER, with regard to IBS — they say if you give some things up for 2-3 weeks, or some say 6 months, you can reintroduce your favs and possibly successfully. So tonight I went out with a large group of friends for dinner. And I was like hmmm, coffee — cheese — wine. So, I had a few small cubes of cheese and a decaf cappuccino. Ahh, it is the little things in life that makes me so so happy. I will see how I do tomorrow morning. And then another time, I will have a glass or perhaps two, of my fav, Cabernet sauvignon.

I too am a fan of sugar-free jello and whipped cream.

Enjoy your evening,

Lorraine

 

[Lorraine]

Hi Charlene:

From time-to-time I get a sweet tooth too. And now that I have IBS, I had to give up yogurt and COFFEE. Me, a coffee addict — good thing I like tea!!!

So perhaps the challenge for us is … Antioxidant Desserts … that way we can have our cake and eat it too. That was to easy, corny — but easy.

https://www.webmd.com/food-recipes/20-common-foods-most-antioxidants

https://www.unitypoint.org/livewell/article.aspx?id=1e49782d-8bf3-4347-94ed-66cdc5e6d891

https://detoxdiy.com/detox-desserts

[Lorraine]

I might give the Low Fat Fruit Tea Loaf a try.

This one is real easy and low calorie SKINNY 3-2-1 MICROWAVE MUG CAKE

https://simple-nourished-living.com/weight-watchers-3-2-1-microwave-mug-cake/

 

 

[Lorraine]

I have to admit that I might want an easier end-of-life exit strategy … so recently I have been thinking about The New York Medical Aid in Dying Act, that is under consideration, which would provide another option, Death with Dignity. https://www.deathwithdignity.org/states/new-york/

https://www.silive.com/news/2019/04/physician-assisted-suicide-laws-are-irredeemably-flawed-commentary.html

This was hard for me to write, but I don’t think I am as brave as the rest of you. In the end I probably would not choose this route, I will probably opt for Hospice, but I needed to admit my thoughts in this safe forum, with people that understand my “chronic sorrow”  and that this is something I have been thinking about.

In the mean time I enjoy each day, embrace each day, grateful each day and love my life!!!

Thank you for letting me get this off my ‘chest’.

Lorraine

 

[Lorraine]

Hi Charlene:

I also found Dr. Hall’s response uplifting and on point.

It is very hard to get IPF out of our heads and hearts. Which is why Mark, or I think it was him who said he calls his IPF his girlfriend, because she is always with him. I admire him for  embracing it that way. Sometimes I dwell on it to much but then I realize I am not enjoying valuable time. So instead I try to escape and take vacations (a/k/a distraction) from it. Of course it is still in the back of mind or perhaps the front of my mind — but  distractions help.

Recently, I saw a Social invite from Meet-up that appealed to me. You will understand why, when you read the following:

“What we’re about

This women’s only group is a social daytime meetup group for those of us suffering from a chronic pain ailment (such as fibromyalgia) or those who have had a long professional work life (like I did) and had to (or forced to) retire earlier than expected. It gets you out of the house (I isolated over 3 years) to meet other women for lunches, movies, day trips, comedy shows, charity events, spas or whatever else can make us happy. It is budget friendly and I tend to find events through Groupon or Eventbrite which allows members to purchase their own tickets but I organize the event so we all go together. All I ask is a reply of Yes or No if you are planning to come to an event.

If you are a positive person and want to socialize this group is for you. Come in with your ideas for fun adventures (be mindful that some of our members can’t walk very far) and perhaps your ideas will be the next meetup group event.

No pity party ladies allowed! We understand and accept our health and/or other uncontrollable troubles in life, we are just looking to “tune out” for a little while. This is our safe and comfortable haven.”

They do a lot of fun things, and I joined. Wednesday will be my second event.

Let’s try going IPF unplugged or just tune out!!!

Best wishes,

Lorraine

[Lorraine]

Hi: I found this email thread very helpful to me on many levels… emotionally, mentally, spiritually and appreciated the alternative medicine insight and thoughts/approaches on going forward, in general.

I currently use many supplements, prescribed by a  naturopathic cardiologist via TelMed. I do not take 81 mg aspirin or statins, due to side effects and controversy. This email thread will help me in my desire to add lung supplements, independently or through a naturopathic pulmonologist, to be identified.

Next, I have never been a fan of vaccines and therefore have never had a flu or pneumonia vax. However, I may reconsider the pneumonia vax for obvious reasons. Any thoughts pro or con? I would be particularly interested in hearing from those who refrain from taking the two vaccines and how you protect yourself. Thank you.

[Lorraine]

Hi John:

Thank you for your reply and insight about your experiences and adjustments to your ongoing treatment.

Also, I appreciated you telling me that you sent your chiropractor an e-mail with the Egyptian study attached because it shows the acupuncture sites for the lungs and asked if he could do a little time over the acupuncture sites.  I will do the same! And yes, any improvement is great news, and I hope it continues and remains steady. And I hoping for the same!

And yes, special thanks to Charlene for letting us post on this topic and for preserving the history of LT Part I & II. I think I have read this trilogy several times, since it is so important.

 

[Lorraine]

Hi @lowe and Charlene:

Before I knew I had IPF and in preparation for a total hip replacement, I had my tub cut, so that I could walk in to my tub, to take a shower. That and the grab bars helped me during my hip replacement recovery.

 

[Lorraine]

Hi @thom:

I appreciated reading your post, specifically regarding Ofev and the possibility of a heart attack as a side effect.

I was diagnosed in 2016 with ILD/PF. My doctor has not started me on medication. I now started to see a second doctor, who changed the diagnosis to IPF.  I go for my follow-up appointment in May.

Also, in 2016, it was discovered all coronary arteries were blocked and I subsequently received two heart stents. In 2017, I began to  TelMed with a Naturopathic Cardiologist who orders blood work-up before prescribing me supplements.

I recently started k-laser treatments, 5 thus far.

When I see the pulmonologist next month, I will ask about medications and if I am a lung transplant candidate.

Best wishes,

Lorraine

 

[Lorraine]

Thank you for the additional tips @katiebagshawe — specifically to discuss palliative care, and all that it includes, when I meetup with hospice staff. I will find out if we have something like Marie Curie charity here in NYC. In addition to going to the World Trade Center-9/11 Clinic, I just started seeing a doctor at the Mt Sinai National Jewish Health Respiratory Institute. At some point I will meet with their team regarding palliative care and other support and resources. With appreciation, Lorraine

 

[Lorraine]

Hi Charlene and Katie:

Thank you for your kind words and support! Also for all the amazing resources, experiences and ideas. I am digesting all you have shared and will read and reread what both of you have written — a few times I am sure. I am really lucky to have stumbled upon this forum. Also, I plan to watch the movie Charlene recommended and to read the book Katie mentioned.

I will certainly follow how the Physician-assisted suicide plays out in NY. And it is understandable that there are flaws in the laws that have been passed to date considering all of the challenges, as pointed out by Katie.

And yes, great minds think alike … That said I am planning to contact a nearby hospice residence. I recently read an article about that hospice and they said, “When would it be appropriate to consider contacting hospice? If the day arrives when you hear the words “terminally ill,” that might be when you should consider contacting us.” Getting these types of things in order  will give me comfort, as they have been hanging over my head and heart, which is why I need to step-up.

This forum has become very important to me. I have learned a lot. Able to vent and take advantage of resources. For example,  I am happy to report that I had my first k laser treatment today and will complete week 1 on Friday.

Thank you so much,

Lorraine

[Lorraine]

Thank you Mark! I appreciate your advice and reasoning. Congrats on transplant and I am glad you have been staying healthy. Keep doing what you are doing.