[Carlo De Pellegrin]

Lnour, absolutely agree!

 

[Carlo De Pellegrin]

Wow! This discussion has been going on for two years!

I am a wine drinker, almost always red Tuscan Italian and one glass almost every dinner and occasionally a second or part of a second with fruit and cheese after dinner. When I spoke with Dr Shapera ( when I entered the IPL clinic at TGH in September, 2020 ) he had no objection to this.

Occasionally with a seafood or fish dinner I will drink a glass of white.

Because I take Esbriet with my meals, I always wash down the tablet with lots of water.

[Carlo De Pellegrin]

Doctor Don ( if I may), Thank you so much for your reply. It is always so much it seems I don’t know.

My oximeter is exactly like a coupe in the ‘best’ list on google…meaning nothing to me as it came directly from China, unknown to me until I received the shipping status. I guess I can test it the next time I’m getting a covid test or in to see my doc. I have searched all I can today about the inspirometer and found a couple of articles on how these devices ( seem like at least a couple of different ones ) to help teach the lungs to breathe deeper…assume that’s a good thing. Nothing I could find on “mso-space run: yes;” I have asked the doctor, indirectly, and waiting for a reply.

I am on Esbriet even though I am a golfer, that could be a bit of a stretch, but I am on the course three times a week. I was in Mexico in mid-January or three weeks until Justin conned me into coming home. I wore a long sleeve sun shirt the first day and just lathered up with sunscreen the other days and was fine. Just saying as I did not want to be running off the course being on EFEV.

any and all info appreciated from all!!

Keep breathing, Carlo

[Carlo De Pellegrin]

Dear Dr. Salzberg,

First things first! Do your friends call you Doctor Donald or Donald Doc?

Was you initial comment about my brilliant assessment or about Mark’s brilliant replies.

Was your comment about nail polish meant as your best medical advice or were you addressing the ladies on the site?

Seriously, I would love some feed back on exercise and side effects of Esbriet. I have just had my first virtual meeting with my new respirologist who suggested that longer and less elevation on the treadmill is better and so I am now 35 minutes at level 2. I do get a wee bit of walk through angina, but very manageable. I am working towards 60 minutes by the end of March. I am really tired first thing in the morning and can only get my butt down to the treadmill 3 or 4 times a week. I have an oximeter that I bought on line but no idea how accurate it is? Any suggestions for a quality one. Any idea if you can get a golf yardage watch with one built in? ( I play at Clublink, Station Creek is my home course ).

I do a series of stretches a couple of time a week, but need to get the week filled up with at least 3 treadmill and 3 stretch sessions.

I would love to know the difference between a spirometer and an inspirometer, what i would do with them and suggestions as to a quality name brand. OK, I’ve pestered you guys enough.

Be well all, Carlo

 

[Carlo De Pellegrin]

Great positivity here! thank you…

I need a target. i am 73 years old ( shh,  don’t tell anyone ) diagnosed with IPF September, 2020 and went on Esbriet. Do have side effects from the Esbriet, but want to know how others are doing walking ( now on a treadmill in doors because of the cold )

I walk for 30 minutes at 2.8mph on a slight incline ( no.4 ) and occasionally get down to 90 O2, when I ease up for a bit and then continue. What are others doing? What should be my target?

thank all again

[Carlo De Pellegrin]

Mark, very impressed with you replies to Marj. Marj, good luck with your husband.

Does the “KEYMASTER” blue tab on your reply mean you are really smart or just smarter than me?

Either way, i have been on Esbriet since the end of September, 2020 and am still experiencing nausea, headaches and lightheadedness. This was substantially reduced during the three weeks I spent in Mexico from mid January. However, PM Justin decided he would close the Canadian  border and so I returned. Any comment or suggestion?

[Carlo De Pellegrin]

Traditional doctors won’t comment on naturopathic meds due to lack of empirical testing and even naturopathic doctors tend to have a group of meds they provide and stay with what they know. That is why it is so important that we share what ever little bit of information we can amongst ourselves.

[Carlo De Pellegrin]

Jill, Thank you very much for your comments. I am on Esbriet, since end of September, 2020. I am scheduled to virtually meet a new respirologist in a couple of weeks and get his opinion then.

[Carlo De Pellegrin]

Eileen , Denny

Thank  you both for your comments. I will speak to my new local respirologist in a virtual appointment in a couple of weeks and discuss with him at that time.

Carlo

[Carlo De Pellegrin]

Denny, I think ! saw your reply earlier and can’t find if I questioned it then or not?  Are you saying your plateauing was because of the Wei products or because of the hockey? Are you saying the Wei products only helped with your GERD?

Apologies for the repetition, if so!

[Carlo De Pellegrin]

I was diagnosed with IPF end of September, 2020. I have been on Esbriet since, so just mid month four. Although diagnosed recently there were signs of lung deterioration 5 years ago. I was getting annual CT scans to keep an eye on me lungs since I had a VATS lobectomy for carcinoid cancer almost 9 years ago. My first few months with Esbriet were good, but the last month or so the nausea and dizziness have been a problem. I am not on oxygen and walk on a treadmill 3 or 4 times a week for 30 minutes at 2.7 miles per hour.
Could someone please tell me i am going to live forever?? Ok, so if I don’t get immortality, can I get a comparison to your status, especially the nausea and dizziness. I just went downstairs to get my oximeter and O2 was 97, HR mid 80s, now 3/4 minutes later HR down to 66.  All this really to say that I think the dizziness and nausea are related to the Esbriet. al comments apprecaited.

Carlo

[Carlo De Pellegrin]

Hey Charlene, Where’s home? That’s a great background on your photo…where’s that? I certainly will post any info I hear or see about covid vaccine.

[Carlo De Pellegrin]

I have been of Esbriet for three months now and still suffer nausea and fatigue. Esbriet nurse suggest taking the three tablets beginning, mid and end of meal. Slight improvement in nausea, none in fatigue after three days

Carlo

[Carlo De Pellegrin]

Good morning Charlene and all others,

I live in Richmond Hill, just north of Toronto, Canada ( for our American friends) and have just now again checked the MacKenzie Hospital Richmond Hill web site and no reference yet to seniors with or without other factors (IPF, for example) on any possible schedule until later on the winter, ( not defined ). Until mid January scheduling the front line workers, medical, long erot care,residents and staff, indigenous people all getting priority…

My guess is that we not not hear anything more until mid/late January for schedule to begin late spring/ early summer.

Carlo

[Carlo De Pellegrin]

I have dealt with arthritis most of my life. I have taken a variety of pain killers with not much success. Summer 2019 I had cortisone injected into both hips and one knee. I had two PRP ( platelet rich plasma ) treatments on both hips and one knee. The cortisone and PRP were moderately ,but very short term, successful. I also went through two pre-operative  appointments at two different hospitals to access for surgery and stopped both.    Last January I met a guy in a local restaurant in Nuevo Vallarta, where I have spent many winters who told me about a natural   anti-inflammatory that he bought at a candy store in a nearby village. Having nothing to lose I went bought a couple of bottles of same and have not had arthritic pain since. Since that time I have introduced a dozen or so people to this stuff who all  have found it works for them . It is called RMSOL manufactured by: ‘Segoe UI Historic’, ‘Segoe UI’,  Tienda Naturista Don Jose Gracian.

Lots of material on google about RMSOL.  No side affects for me in 11 months. I was diagnosed with IPF in September, 2020.

[Carlo De Pellegrin]

That’s great news! I’m not sure if it’s the Esbriet or just new lazy Laois you eating habits but I’ve gained about 20 pounds in the last 10 months….some I think is COVID isolation and maybe some Esbriet? Others gain weight on Esbriet??

[Carlo De Pellegrin]

Randy, I am still doing research but will let everyone know if I decide to try. It will be January, when hopefully I will be in Mexico. The problem of course then will be that being in mexico alone will make me feel better, so it would be difficult to separate the two…Mexico and Wei products.

[Carlo De Pellegrin]

Steve, Thank you very much for your reply. So glad that it has worked for you. I was only diagnosed in September so I am new to this disease. Any positive news is great. Would sure like to hear about your results after your recent product delivery. I will not make a decsion until the new year as I might be able to get part of the costs cover by my HSA.
all the best in your battle.
Carlo

[Carlo De Pellegrin]

hi Sherman, thanks for the comment on this thread. I really don’t have much of an issue with cough or clearing flehm in the morning. i do wake up with a “sore throat which i guess is gunk (very technical term) but it disappears as soon as I have a glass of water or couple sips of coffee.

My concern is that the Esbriet is supposed to only slow down the deterioration of my lungs. I want something that will stop the deterioration or maybe even repair some of the damage….hopeful thinking??

[Carlo De Pellegrin]

QUOTE FROM GLOBAL TY POSTING JUST NOW DEC 29 AT 11:52

Gen. Rick Hillier, the head of Ontario’s vaccine distribution task force, laid out the three-phase plan again providing numbers of Ontarians expected to be vaccinated based on vaccine supply.

Hillier said Phase 1 will be completed roughly by the end of March with about 1 to 1.5 million Ontarians being vaccinated — which includes health care workers and First Nations.

Phase 2 will then begin in April and have another 7.5 million people vaccinated with 15 million doses. Phase 3 will then begin late in the summer which includes anyone who wants to get a vaccine can get one.

COPIED FRON ONTARIO SITE JUST NOW
PHASE 1
Residents, essential caregivers,
and staff of congregate care
settings for seniors
Health care workers
Adults in First Nations, Métis,
and Inuit populations
Adult recipients of chronic
home health care

PHASE 2
Expanded for health care
workers, long-term care homes,
retirement homes, home care
patients with chronic conditions
and additional First Nation
communities and urban
Indigenous populations,
including Métis and Inuit adults.
PHASE 3
All eligible Ontarians

LOOKS LIKE MOST PEOPLE ON THIS SITE WOULD BE IN PHASE 2 IF YOU ARE IN ONTARIO

GOOD LUCK TO ALL, Carlo

[Carlo De Pellegrin]

Regina, I’ve been in Esbreit  for about 11 weeks and te nausea a bit better. Was told to take WITH MEALS  and not wait a couple,e of hours afterwards. Not 100% but a bit better. The lack of energy continues, but I think part of that is the onset of winter. Although I was getting tired, when the weather permitted I was still playing at least three rounds of golf per week! Hopes to go to Mexico mid January still alive and I. Sure that will help.

[Carlo De Pellegrin]

Hi Steve,
i have been on Esbriet since September 25. went through the two week transition and have been on 801mgs since. I was having significant nausea in the mornings and was advised by the pharmacy person to make sure and take the med right at meal time and not wait. i was trying to spread the time out between doses and so waited after dinner for a couple of hours. The next morning I was nauseous all morning. i now take the med with dinner and the nausea is better , but not always completely better.
good luck with your battle.
Carlo