Linda Williams
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Hello Charlene,
I have wondered about my skin issues, mostly more spots that are pinkish in color, dry and hardened. They also tend to grow some but part of top comes off when I rub it. No redness around it, on arms. Have noted white dry scabby areas on thighs as well. Skin dryer than usual and does not respond for as long to lotion applications. Occasionally itching on chest and arms as well. However, I am not on an anti-fibrotic for the IPF. On auto immune labwork IgM was elevated, suspected Waldenstrom Non-hodgkins lymphoma, had bone biopsy which showed cloning of only one type protein chain, so just watching via labwork by hematologist oncologist at 3-6mos intervals for almost a yr and a half now. No need for chemo at this time. I did not start OFEV at time of diagnosis of IPF as not sure if chemo would be needed and did not want the two clashing. However, in October 2019 my PCP ordered a fibroscan at my GI doctor office due to my hx of enlarged liver and fatty liver by biopsy in about 1987. I guess it is a good thing I did not take OFEV as diagnosed with advanced fatty liver (Steatosis) and advanced fibrotic liver. Having taken Tamoxifen for 5 years post breast cancer starting in 2004 made the fatty liver worse according to my research. Probably my Dr was unaware of complication but he knew of fatty liver and enzymes elevation. The OFEV would likely have made it even worse. Next step re liver would be cirrhosis if it progresses. (Sorry got off track). Anyhow, without anti-fibrotic for IPF I do see skin changes. I thought maybe from IPF as have read of skin fibrosis but could be just plain getting older??? Am 74.5 yrs old.
Linda Williams
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Dearest Charlene, am so very glad you got to go to Hawaii! Beautiful photos!! Enjoy and breathe easy!
Linda Williams
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<p style=”text-align: center;”>Hi Mark and Wendy. Thank you both for your comments regarding my issues. I am glad Wendy that you have a good husband who helps you. Have you ever tried having him rub some CBD oil on your back and perhaps on chest as well?I am seeing it advertised at Health stores in our area and even saw in lockup box at a good grocery store. I think you are smart Wendy as you have been doing yoga for so long. Just finished doing yoga breathing with my online pulmonary wellness bootcamp. On day #24 out of 42 consecutive days now. I never exercised regularly before but I will be doing something every day from now on. There is a 50% discount right now with code of PWOnline50 making it less than $50! What a deal!</p>
Praying you get better soon Wendy and so glad Mark you are doing well after your unilateral lung transplant.Linda Williams
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Hi Mark ( @mark-koziol )
I was diagnosed with IPF and possible non Hodgkin’s lymphoma of Waldenstrom’s in May, 2018. The latter was discovered by the pulmonologist when he got results of autoimmune land back, as the IgM was elevated. Do he referred me to a hematologist oncologist for follow up with that. As bone marrow results were not elevated enough and I really had no symptoms, the hematologist oncologist then watches labwork every 3 months. As staying stable between 4550-4750,he agreed that I don’t have to get labwork until 6 months for next time. It is called MGUS now. Just one string of protein cloning itself in my bone marrow.
The only pain I have with either of these diagnoses is occasional rib cramping with IPF. I just get thru it and take nothing for it as it does not last that long each episode.
I was diagnosed with osteoarthritis at age 22. Have had multiple joint surgeries, including bilateral open surgeries on shoulders and a knee replacement, three degenerative cervical discs with bulging but which causes most of my pain. Also heel bone spurs, Achilles tendonitis, and fasciatis. These can flare up occasionally and then not bother me for a while. Wear a boot when hurting, sometimes have to get steroid. However, OA problems are just that, not lethal.
I have a history of breast cancer, had partial mastectomy and 4 lymph nodes removed, followed by radiation after incision healed. Thank God found early on annual mammogram. Took Tamoxifen for 5 yrs after that. So I keep on getting those annual mammograms.
I weigh more than I should, but am not diabetic. Have been stable with BMI of about 36. Also GERD (that might have helped cause my IPF?) for at least 45 yrs. A positive TB blood test but x-rays indicate no TB. Took INH for a year 1977-78. Around 1990.found to have high liver enzymes, which are somewhat better now, biopsied and found fatty dense liver but no cancer.
So all in all I had always considered myself of pretty good health until coughing and fatigue and shortness of breath, called Idiopathic Pulmonary Fibrosis, reared its head. And I am doing online pulmonary rehab at home to try to slow that problem. Take no medicine for it except Symbicort inhaler, Montelukast, and Ricola original throat lozenges at the present time. I am on 3 anti-hypertension medicines for blood pressure. Cardiologist says I do not have PH although right ventricle is a little enlarged. Ejection Fraction 55-60%.
Hope this is the info you are looking for. Have a wonderful Full moon weekend!
Linda Williams
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Mark Koziol – sorry, I forgot to say for OA pain only take Naproxen 500mg once about 3 times a week if rest or CBD Oil does not take care of pain.
Linda Williams
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Hi Charlene,
Will be thinking of you more than usual today. ???
Linda Williams
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Hi Jim Nox
I wish you good results from Metformin. Had recently read an article that it was being trialed for PF. A drug so much cheaper than Esbriet or OFEV. Please let us know how your results come out using it. How long will you be on it before tested again? 6 months? 1 yr?
Praying all goes well. Linda Williams
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Hello Leslie – it just seems amazing to me that we can talk to people from all over the earth! Sounds like you are more like a 50 year old than 70! Good for you! Keep on keeping on! (I am 74 but have never been a big exerciser. Trying to change that now.) Linda Williams
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Good to hear from you again Lorraine! So glad you did your rendition of Happy BD for your granddad! YES, I think pulmonary rehab bootcamp is DEFINITELY worth it !!! Finished day 9 today. There was a discount coupon again yesterday. 50 new members recently. I think same instructors as you would have in NYC without the traffic. http://www.pulmonarywellness.com
Linda Williams
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Hi Mark! Thank you. So glad you are getting back on routine and feeling better. I too know I need to change my diet but not easy to do. Have lost between 25-40 lbs more than once but always slowly gain it back. That was before dx of IPF. I did find eating on a smaller plate helped a lot. And no seconds. Don’t do seconds now but need to make meals smaller. Good luck and thanks again for being a monitor for pulmonary fibrosis news. Linda Williams
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Hi Lorraine – I do not know what affected my DLCO or FVC numbers. One thing is I decided not to let administer of the test rush me. Last year I was a mess doing the PFT. The young guy seemed to just want to get thru the test and I felt rushed. This year I decided between the different parts I would not start the next one until I felt ready. However, I also had a much more experienced and kind respiratory therapist giving this PFT. I think that helped a lot, no pushing me to zoom thru the test. He also explained everything ahead of time to me, not just what to do. Now that I am in bootcamp I wonder how different it might be next time when I do a PFT. After the 42 days I plan to do maintenance.
Has that birthday party happened yet? I am sure your grandfather enjoyed it music or not. I never was with either of my grandfathers on their BDs . So both of you were blessed to just be together!
Linda Williams
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Hi Nan – re frequency of PFT’s, My pulmonologist has done a year apart and told me that next year he probably won’t order a High Resolution CT Scan but just the PFT to compare with. I have read others saying they do every 3 months. So I guess it varies. As I don’t want a lung transplant I think he will be more conservative with me. The PFT I just had was ordered as required before respiratory rehab here in our area. However, I have not scheduled that yet as doing pulmonary rehab bootcamp with Dr Noah Greenspan, on my 7th day of 42 today. However, I think if I feel a lot worse, he would order HRCT. Or at least we would talk about it. I do want to maintain as much of my health as I can. May you do well in your treatment.
Linda Williams
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Hi Charlene – yes, I am feeling better physically with a bit more energy doing bootcamp. O2 sats yesterday between 95% down to 90%. Room air. I think of you often and wondered if you have done respiratory rehab yourself with working & fatigue? Starts slowly and keeps progressing, did Qigong yesterday, Yoga breathing day before plus working on accessory muscles for breathing several days now. Started at 4 min walk-about and today on day 6 up to 9 mins. If possible to do continuously but if not can breakdown to whatever we can do to get total 9 mins in. I am very pleased to have chosen to do this. Cannot beat the price plus all it gives me hope of having in future. Have you seen the raremark interview between a Dr in UK and a patient from Plano, TX? He was diagnosed at 72 and is now 81. Good interview. Think I will join site just to be able to listen.
I’ll be thinking of you on your trip and hope you find it quite relaxing and can breathe easy, getting your body relaxed.
Linda Williams
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Mark – I am sure you knew who I was speaking of when I said Kate Bageshaw. But her name is Katie Bagshawe. Linda Williams
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Hi Mark ( @mark-koziol) – I have had an interesting morning listening to raremark interview RE IPF and reading Twitter remarks by Kate Bageshaw here on pulmonary fibrosis. She is so interesting and informative.
I have truly had no schedule and rarely did any exercises other than in daily life work as an RN, mother, and employee in daily life from 14 yrs up. Every once in a while I would get a DVD out and exercise. Meaning to start to do routinely but somehow never got that done. So now, retired, diagnosed with IPF I am doing a routine daily with respiratory rehab here at home at my own timing and convenience. But in the back of my mind I am aware I need to do this yet today. Having a lung disease has finally got me doing it. Did you exercise routinely before your diagnosis?
As I was busy with tests, seeing Dr’s, selling house of 35 yrs, downsizing, and moving last year besides being fatigued and coughing, I did not start exercising until about a week ago, 15 months post diagnosis. Now I wish I had done so beforehand. But I am at 74 years finally doing something and not taking my health for granted. I believe it took me at least a year to accept my diagnosis and decide to do something proactive and not just accept l”what happens does’ as my mindset.
Now that you have started back on your routines I imagine you will feel better and in more control of your life. Thank you for being a moderator and of service to us. It does mean a lot to be able to refer to you and Charlene.
Linda Williams
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Hi Charlene – yes, I am trying to be proactive for my health. This rehab starts slow and progresses over the 6 wks. The Bootcamp is being offered again at 50% discount making it under $50 for 42 consecutive days lessons and strengthening not only Pulmonary but also legs, chest, arms. Lessons in nutrition, meditation, encouragement. I look forward to it daily to do at my own convenience in my home. See http://www.pulmonarywellness.com for new discount for Dr Noah Greenspan’s birthday discount. I plan to use my oximeter now when doing walk-about as I am sure will get longer. And when out and about in 22 acres of sr community I live in.
I hope you are feeling better. BTW when is your trip to Hawaii?
Linda Williams
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Hi Charlene, you are welcome. I do get a lot of info belonging to this group. BTW, I did my own 6 minute walk but not with distance today – with bootcamp here in my LR walked a full 6 mins at times even lifted knees and at other times my arms upward. Started at 95% O2 finger oximeter, with motion starting down to 94% and stayed there until right before the 6 minutes when O2 sat dropped to 92%. This was my 4th day but first at 6 minutes, 2 sessions were 4 mins and yesterday 5 mins. And I did not need to breathe thru pierced lips this time until toward the end whereas was done about half way through. Pray you are feeling better.
Linda Williams
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Hi Mark – Thanks! I did orientation Fri evening for pulmonary bootcamp and Day 1 today as I had a full day yesterday. I think this will help me a lot as I cannot walk too far without resting. Also get motivational talk and a lesson re breathing, nutrition, things that matter to us in our endeavor to maintain what wherd we are at least. Helpfully improve. Linda Williams
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Hi! This posting made me go lookup my results between 12-2-2015 thru 8-14-2019. My % of predicted DLCO went like this: 57-52-53% . So I guess that is pretty stable. The respiratory therapist administering the PFT this last time was so helpful in letting me take my time in between each area of tests, he did not push me to just get thru it. As I am retired RN he and I talked some too, making the testing easier for me too. No perspiring, feeling awful like last year. He told me when I questioned the gases used in very small amounts for this portion are carbon monoxide (the fastest to combine to our blood), CO2, and nitrous oxide. I found that interesting. It is when I look at my FVC that I can see changes:. From 10-01-2001 to 8-14-2019 the actual went from 3.77 to 2.84 and % predicted from 107 down to 88% last yr and back up to 93% this year. Last year was a worse year for me physically. I am not as fatigued this year. The DLCO was not listed for years 2001 and 2007. I must have been in a full exacerbation in Jan & Feb & part of March last yr as I truly felt like I was dying and just didn’t care. And had no idea what the super fatigue, constant cough and not wanting to eat, never mind having energy to fix it was caused by. Diagnosis IPF in May, 2018. Thank God I didn’t die and have found help and advice. Thank you all.
Linda Williams
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Hi Mark! Somehow I missed that posting that gave places to get information and support from. I just now used the URL above the photo thinking it would tell me. Will try info under it in a minute. This website was the first one I found in looking for information and I have found it is easier to manuever on than some other sites. All the members have seemed to be supportive and offer info regarding their experiences. You and Charlene Marshall are doing very good at being monitors and bringing up new topics. Did your list include Ultimate Pulmonary Wellness page on FB or the website http://www.pulmonarywellness.com ? I have come across it on FB first. Also Dr Noah Greenspan has a book by the same name of FB page and can be bought thru Amazon.
Through this weekend, ending at 11:59pm Sunday 8-25-2019 there is a 50% discount on Dr Noah Greenspan’s “boot camp” for cardiopulmonary patients. That comes out just under $50. As I have not heard anything from my local hospital cardiopulmonary department, I decided to give it a try. I did my orientation to it this evening and at the end of it a 4 minute “walk about”. Toward the last half of continuous moving with him showing per video, I was breathing thru pierced lips but I did it. Actually was pretty pleased with myself for signing up, getting it streaming on my TV, tablet, and phone so I can do each days lessons no matter where I am. The program is a 6 week/42 day course and can be done at the person’s own convenience. If after camp is done, they can sign up for $14.99/mo to continue to get webinars and physical instructions as well. There are some free webinars on FB page and also his book can be read free online. To sign up for the bootcamp, go to http://www.pulmonarywellness.com. create a sign in, go to menu, click on online, then bootcamp and register. Toward the end of registration click on I have a discount code and input PWOnline50, then give credit card info and they will show you price charged under $50!
Actually I think the program would be good for anyone as emphasis on exercise, nutrition, meditation, and emotional support. Just thought I should share this and hope you can get posted so can be used this weekend. Thanks Mark
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Charlene
Yes, I hope that our discussion not only benefited me but his other patients as well. Seems a lot of Drs refer to him in our area. Even the cardiologist I saw does. I know the pulmonologist does the six minute distance walk in his office as I saw a lady doing one. I did forget to ask him about that but wonder if they might do at respiratory rehab? Maybe he just waits until closer to having need for oxygen? I am still 90-96% when use oximeter. He did tell me next year not do HRCT due to radiation but will do another PFT. I hope you enjoy your visit with your friend! Seems my house is always cleaner when I know someone is coming. My incentive to do some cleaning each day, a little at a time!
Linda Williams -
Hi Charlene. It’s Linda Williams again. Had a HRCT scan last week with a copy to a second pulmonologist name on it as well as the first pulmonologist name. Don’t know if he saw it or not, but his office called for me to come in that day. It was his order to get the HRCT scan. So I went in and told him how I felt about him just seeming to want to get me on OFEV and it felt like my further health was not if concern when I told him no CPR, ventilator, tube feedings, or transplants. He said he did not mean to seem that way.. This time he is the one who mentioned respiratory rehab. Which I told him I would be glad to do. Had the PFT 2 days ago as rehab needs that before I can start. He even offered to write me a renewal for my Symbicort but I told him I had from PCP as they are who put me on it. The second pulmonologist was not brought up and for now I will stay as first Dr’s patient. Think my Frank discussion surprised him. I still have not had a 6 min walk test but not need O2 yet. When I was gathering papers of tests done previously I noted scarring, subpleural reticulation but no honeycomb. Since 2016 so my previous PCP thought nothing about that. Both the HRCT And PFT remain pretty stable thus year to last year.
This has nothing to do with fatigue which I still have too. But after three 4-5 hr days in a row gone from house, I have did not do anything yesterday and very little today. Goodness knows there is plenty to do. Just no umph.
I saw a posting made by JIM DAWSON today but do not find here where the link took me. It really made me worry that he is severely depressed and I wish he would see someone to help.him. Also.made me feel helpless in help him, to tell him it would get better.
Linda Williams
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@daryllong
Hi Daryl Long! Thank you for responding to my question. I take it that the Nonin and Zaccurate are finger oximeters. I had never heard of these brands but now I have thanks to you. This should seem like an easy topic but appears much yet to be learned. Wondering if your therapist puts on thumb as mentioned by Terry Moriarty previously or on index finger. I start respiratory rehab soon after having a PFT tomorrow, so it will be interesting to see where the therapist in my case places it. I really would like to find a reliable tracker for O2 sats and steps. Have you found any? Thanks again. Linda Williams
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Hi again Charlene.
Still on topic of reduced DLCO. I received a call today from a local hospital pulmonary rehab Dept. He told me they’d received an order from my Pulmonologist for rehab. I explained I just am starting my 3rd week of online rehab so could he hold the order until after I finished the 6 weeks? He had my latest PFT and told me I just did qualify with my DLCO in 50’s. They cannot accept a patient in their rehab if DLCO 60 or better. He also said my FEV1 at 116 and ratio were important to look at but mine were pretty good so they must have diagnosed me at age 73 pretty early. My DLCO as listed before has been in 50’s since 2015 that I am aware of. My thought is not to depend on just a PCP to know when you need to be referred to a pulmonologist. The person themself is still the best advocate for self! And even if seeing a pulmonologist may have to push for cardiopulmonary rehab.
<p style=”text-align: center;”>Praying you are doing better with an increase in energy. Hoping Dr okays your trip plans tomorrow when you see him/her.</p>
Linda Williams