December 27, 2017. This is a very quick update which I am attempting to do from my phone and I am hoping it will work. I do not blog much but I want to assure everyone that I am still doing well. It has been about a couple of years since my last post, and I just want everyone to know that while I may have gained five or 10 pounds I am still at a healthy weight or right on the verge of healthy BMI range. My breathing continues to be good and despite very subtle crackling that doctors can hear in the lower lobes of my lungs, I don’t really notice anything going on with my lungs. (It May still be there technically, but it does not adversely affect me.)
That being said my ILD (the NSIP or Non-Specific Interstitial Disease) is probably being caused by the several autoimmune diseases I have been diagnosed with including PMR (Polymyalgia Rheumatica) as well as RA perhaps. I was diagnosed in February of 2016 with LGL Leukemia (beta), which sounds worse than it is, because it is chronic leukemia rather than acute leukemia, and I am told that people live for decades with LGL Leukemia. The biggest concern is trying not to get an infection, since I have a very low white blood cell count (neutropenia) and especially low Neutrophils at approximately one-fourth the level they should be. One doctor told me recently, another way to think about this disease is to think of it as Lymphocytosis rather than Leukemia, because what’s happening is my lymphocytes are crowding out my Neutrophils for some reason.
Anyway, my walking routine has been a little more intermittent over the last few months than usual, mainly due to some knee problems I went through and my arthritis,  which has been acting up in both my feet and hands. While I had an almost perfect month in October, I did have a perfect November in terms of walking 5 miles/day and hitting my 3 goals daily on my activity app on my Apple Watch. But we had a big snow (12 inches) on December 8 and that blew my chance for a perfect month because I couldn’t get out and exercise. So, with the holidays and all I have been taking it a bit easier over the last several weeks. However, my goal is to get back to a perfect month in January 2018, walking 5 miles a day and continuing to do the 5:2 Fast Diet that I’ve been doing for the most part successfully for years. (See other posts below for details on that diet.)
I keep remembering back to when I was first diagnosed with ILD and was out of breath walking very short distances and I asked my pulmonologist what I could do, and he said that I could walk. And I took that as a challenge and began WALKING religiously! At first it was only a mile on the treadmill and it was painful and difficult, but then it got easier and I began to extend my goals in small increments until I gradually made it up to 5 miles a day. Then I moderated that goal to just make sure my watch recorded me walking 5 miles during the course of a day. So, often I only have to walk 2 to 3 more miles when I come home after working to reach my daily activity goals. I firmly believe walking through the pain early on is what allowed me to extend my walking and put my lung disease in a remission-like state. Basically, that was my treatment — WALKING! I highly recommend it to everyone!
Best wishes to ALL for a Healthy and Happy New Year!

January 2016 Update on ILD (NSIP and/or DIP)

Greetings!

This is a quick update to tell you that I visited my pulmonologist, Dr. Lake Morrison at Duke Medical Clinic last month (Dec. 2015) and was told by him that I am now in remission! My PFT (Pulmonary Function Test) was normal and he saw no evidence of lung disease and my lungs sounded clear. So I am here to tell you that there is hope—and I believe walking can make a difference!

(By the way, I am only on 5 mg of Prednisone daily for PMR (was down to 3 mg/day until around October when I began feeling Polymyalgia Rheumatica related pain in my shoulders and hips). But I am staring to taper down again, by alternating between taking 5 mg and 4 mg./day, staring today.)

I now weigh 155 to 160 lbs. which is right where I want to be, and I walk a minimum of 5 miles a day, every day!

"Walking is the best Medicine!"

Wishing you all the best,

Robert Tynes

A record of my weight loss over the last year is shown below:

I have followed the 5:2 Fast Diet (see book by Dr. Michael Mosely) as well as been walking at least 5 miles per day, 7 days a week for the last six months or more, with few exceptions, and with no exceptions over the last 82 days! (P.S. I love my Apple Watch and how it allows me to track my progress!)

Latest Update: 5/28/15

Latest Update: 5/28/15

I am pleased to report that I received perfectly normal PFT (Pulmonary Function Test) results on Tuesday when I visited my local pulmonologist in Asheville. The breathing test was 106% of predicted and I think he said the CO2 exchange was 99.9%. Dr. Campbell basically said I am keeping the ILD in check and that the low dose of prednisone I am taking (5 mg/day) is really not for the ILD, but for the Polymialgia Rheumatica (an autoimmune disease) that I also have.

I am also happy to report that I have been feeling great and continuing to steadily lose weight through regular exercise and dieting, especially since January 1, 2015. I attribute my success to walking 5 miles per day at an average of 4.4 or 4.5 mph with 60 second (rather than 20 sec.) spurts now, and at 6 to 7 mph now (rather than 5 mph) which I am completing about every half mile.

I have also been continuing the 5:2 Fast Diet, in which I try to keep my calorie count down to around 650 calories for two nonconsecutive days a week, or at least once a week. My BMI is currently 23.1 (well within the normal range). Here is a screenshot of my weight loss record from January 2015 to today, May 28, 2015, where I currently weigh 160.8 lbs.:

My goal is going to be to try and get down to 150 or 155 lbs and to try and keep my weight between 150 and 160 lbs. for the rest of my life! — which I hope will be a LONG TIME!

5/07/2015 Update

OK, I am not good at blogging because I don't do it regularly and it takes me about an hour to figure out how to login with the right account and password and then find my way to the "new post" area. So my apologies...

Anyway, I just want to check in with anyone who might read this and let you know that I am still doing well after over 2 years of being diagnosed with ILD (DIP and/or NSIP) I am now down to taking only 5 mg/day of prednisone (mainly due to my Polymyalgia Rheumatica autoimmune disease, rather than due to ILD) and I weigh 163.5. I am hoping to reach 150 lbs this summer, and my goal is to then stay between 150 and 160. I have been continuing to walk a lot, and have now increased my walking to at least 5 miles a day, five days a week (and sometimes more). I work out with weights for about 30 minutes on the other two days of the week that I don't walk. This helps because I am at my local fitness center every day (unless, like lately I decide to walk laps around our local lake in Black Mountain). I generally walk at 4 MPH, but when on the treadmill, I like to increase it often up to 4.3 miles per hour and then every two laps (or every half mile) I jog at 6.5 or 7 MPH for 1 minute. I started out by walking a total of 3 miles or so and doing three 20 second spurts of jogging (spaced a couple of minutes apart) [alla Dr. Michael Mosley's suggestion on PBS] near the end of my walk, but now those 20 second spurts have become 1 minute spurts and I do ten of them instead of 3 during my walks, which is now a 20 lap or 5 mile walk. (Sometimes I have done 24 laps or 6 miles!)  

But the best part is that I have no symptoms at all of shortness of breath or any pain from breathing deep as I had a couple of years ago. I had a good checkup back in November with my pulmonologist at Duke Medical Center and he seemed to think I would be able to "put this behind me" or as he explained it is being held in check and that I need not make another appointment with him since he is busy with patients who really need his help. (I knocked the top out of the 6 minute walk test) and I did pretty well on the PFT (Pulmonary Function Test) also, but I asked for another appointment in a year just to make sure things are on track still, but I really do feel great!

In addition to continuing to walk 5 or 6 miles (at least 5 days a week) I have also continued to stay on the 5:2 Fast Diet and find it so amazing that I can just take off any pounds I might have gained the day or two before by sticking to this fast diet and walking.

I have an annual physical appointment with my doctor in about a week, so I am hoping I'll get a good report then as well. I'll try and login and post another update again soon. In the meantime, I'm looking forward to finishing up the semester and getting back in the studio where I will be doing some sanding once again, but with a new tool designed for dust extraction and while wearing an appropriate mask to reduce the risk of fine dust particulates getting into my lungs. (I have virtually been avoiding working in the wood shop since being diagnosed, so it will be a cautious adjustment to make.)

The bottom line is that WALKING seems to have changed my metabolism and it really works!

1/19/15 Update - So sorry for the delay in posting!

So sorry for the delay in posting! I'm just really unfamiliar with the whole blogging thing and how to moderate and post, etc.

I have been getting healthier and healthier for the past two years since my original diagnosis and I have even been told by my pulmonologist at Duke University Medical Center that I may be able to put this disease behind me! Later he said that while remission is not a word he would use with this disease, that keeping my ILD in check is what he thinks I'll be able to do with infrequent PFT Test monitoring, etc. He even suggested in Nov. 2014, that I might not need to make a followup appointment, but I insisted on another visit in a year, just to make sure everything is continuing to go well.

So the really good news is that I am currently on a relatively low dose of 6 mg/day of prednisone, and hope to taper that down to 5 mg in another month or so. I have NO SYMPTOMS anymore of ILD, that I notice, and mostly I think it is because I have been WALKING, WALKING, WALKING!!! By the way, I am now walking 4 miles/day on at least 5 days a week. Two days a week I do some light weight lifting on machines at the gym. I have recently walked as much as 6 miles on the treadmill at a pace of 4 or 4.1 MPH, and I did that in a single session of less than 90 minutes! (And normally I now do at least 4 miles in an hour.) So I have become a firm believer in the power of walking if you have a lung disease like mine and you can walk through the pain at first. (I used to hear the crackling in my lungs from my disease, late at night when everything was quiet, but I haven't heard that in more than a year!)

Anyway, some more good news (since my last post, which was forever ago) is that I have maintained a lower weight for almost 2 years now. I have done this by continuing the 5:2 Fast Diet (book is by Michael Mosley). My wife and I saw a program by him on PBS and decided to try it, especially after my brother had tried it with success. A year ago I weighed about 205 lbs., and I am currently hovering between 175.5 and 178.5 pounds. I am about 5' 10 inches tall — so, while my BMI is slightly higher than the normal range or slightly overweight, I feel I'm pretty much in control and can bring my weight down more by fasting (limiting my calorie intake to around 650 on those Fast Days).

I also have a recipe for "Ak-Maks & Lox" as we call it, which uses the Ak-Mak crackers and 1/3 less fat cream cheese and 1 oz. of smoked salmon or lox, capers and chopped red onion and tomatoes to make something similar to a traditional Bagel & Lox. We love it and it is our evening meal on Fast Days and contains just over 200 calories! For breakfast, we have one fried egg, a piece of whole grain toast with butter on it, 6 oz. of orange juice, and coffee. For lunch my wife makes a smoothie which is healthy and contains about 60-70 calories.

I post this so that others may be able to benefit from what has worked for me, but I wish you all the best results in any way that might work for you! Thanks for reading!

Feel free to comment or ask questions, as I think I've now figured out how to moderate and post responses, etc.

8/9/13 - Follow-up Pulmonary Function Test

On August 9, I went in for a follow-up visit at Asheville Pulmonary, and was given a PFT (Pulmonary Function Test) pr breathing test. The results were very favorable and approximately similar to the results I received from the PFT at Duke 3-1/2 weeks before. Some results were in normal range and some were slightly below normal, but for the most part things looked in the normal range. I am going to try an scan these results and post them on here so the details can be viewed, but one of the main things I remember is that the exchange of Oxygen and CO2 had actually improved to normal range! Dr. Campbell, my local Pulmonologist, stopped in and congratulated me on the results and said to keep up the exercise and dieting!

Slight setback: About a week later, I was walking on campus uphill and discovered that I was getting out of breath in doing so, this despite my regimen of walking 3.5 miles per day. And over the past couple of weeks, I have days when I over exert myself and experience dyspnea or shortness of breath (SOB). It is puzzling to me, as to why this happens some days and not others. However, this all started 5 days after I had tapered down on my dose of prednisone from 40 mg/day to 30 mg/day, so one suspicion I have is the dosage of prednisone. A few other things that also happened at the same time were that school started at the university where I teach (which increases stress) and I was painting for the first time again in 11 or 12 months, in preparation for the annual faculty art show—although I was wearing a mask when sanding primed panels and I was painting with acrylic paint only, and I had missed 3 days straight of exercise around that time, due to classes starting, etc.

So over the last two weeks, when I go to the gym to walk, sometimes I am able to do the 3.5 mile walk just fine, and other days, I find my heart rate goes up into the 180s (which is fine for me and my doctors have approved this rate, as long as I am feeling okay. But this occurs by the end of the first mile sometimes, and I have not felt like continuing, as I am somewhat out of breath and laboring more than usual, so I will stop and do some weight lifting,, etc. then try another mile, but that is usually my limit on those days (2 miles total with a break). Other days, I seem to be able to do my 3.5 miles with little or no problem, so I am stumped and look forward to finding out what Dr. Campbell and/or Dr. Morrison recommend.

I am planning to contact Dr. Campbell and let him know about my recent symptoms of not being able to get through 3.5 miles of walking on a treadmill on some days and see what he suggests regarding changing course on the prednisone dose, but I really don't think I am ready to taper down to 20 mg/day from the current 30 mg/day that I am currently taking.

7/28/13 - Visit to Duke University Medicine - Good Report!

Visit to Duke University Medicine - Good Report!

On July 15, 2013 I went to Duke Clinic in Durham, NC and saw Dr. Lake Morrison after having a CT scan and a breathing test there earlier that day. The bottom line is that according to Dr. Morrison the CT scan was markedly improved and showed little signs of inflammation now with most of the cloudiness having cleared. There was still evidence of some permanent scarring, but not as much as expected. The breathing test results were also much improved, and while there is still some problem with the exchange of Oxygen and CO2, the breathing test results according to Dr. Morrison were close to normal. I also basically had no difficulty with shortness of breath or pain in taking the breathing test at Duke, unlike when I had taken the breathing test in Asheville and was short of breath and in some pain trying to perform the prescribed breathing tests on the machine. Dr. Morrison was impressed with my progress and seemed to think that it was due primarily to the high dose of prednisone I am taking, but since I know that my symptoms (dyspnea or shortness of breath as well as experiencing pain in taking deep breaths, in addition to not hearing the crackling velcro-like sounds of fibrosis anymore) were improving and had basically gone away by the time I started the heavy doses of prednisone at 60 mg/day on June 11, 2013. Therefore, I really think that the diet and exercise I have been doing so conscientiously have made a big difference in my improvement. I have also been getting acupuncture treatments for a couple of months now, averaging 1 treatment every week or two, and this too may have also played a role in my good progress. Because of my good progress, Dr. Morrison is recommending a little faster taper on the prednisone dose than I had originally thought there would be? He is now recommending that I drop from the current dose of 40 mg/day to 30 mg/day beginning Aug. 11. After that he wants the dosage to drop to 20 mg/day beginning September 11, and to hold it there for a few months while monitoring me with breathing tests to be sure all is going well. 

I also need to follow up with Dr. Morrison since he has had a chance to now look at the slides of the biopsy and find out what he thinks about the Mayo Clinic pathology report diagnosis of DIP and/or NSIP. I also want to follow up with him about getting some better interpretation (including normal ranges) for the breathing test results from Duke, so I can better understand the data and what the results mean.

On July 16, the following day, I met with Dr. Adam Perlman, Director of Duke Integrative Medicine for a new patient consultation. He said he thought I was doing everything right, and to be sure and do what I can to eat anti-inflammatory foods and to eat less sugar and wheat, etc. He also recommended that I continue acupuncture and start taking turmeric as an anti-inflammatory supplement to my diet. He also mentioned one other supplement that I will have to look up, as I don't recall the name right now. But all-in-all the consultation with Dr. Perlman was very positive and reinforced what I am already proactively doing! I continue to feel great, better than I have felt in 20 years, and I am now down to about 172 pounds! I'd like to lose another 10 or 15 pounds and then stay between 150 and 160 pounds. That would be an ideal weight! I am currently walking 3.5 miles a day, 7 days a week! I am convinced this has really helped me lose weight, along with the three 20-second spurts I am doing during the last few laps of my walk. The 5:2 Intermittent Fast Diet has also helped tremendously, but my progress has slowed a bit on the diet as we have had to abandon it a couple of times recently due to birthday parties and other distractions, but we hope to get back on track with that and I'd like to see my weight drop to 170 in the next week!