[Marianne]

Hi Mark –

I am doing better the past 2 days.  The pain is much milder.  Walking more.  Doing the breathing machines.  The 2500 Voldyne machine is the one that is giving me fits.  I know I need to get the numbers up higher.  I was told this by a good friend who is a retired RN.  This machine is based on your age and height.  I should be able to get the breaths up to 1650 and above each time.  Many times I can only get it to 1000.  I am trying to do better.  I have friends and relatives either calling, texting or stopping by to make sure I am behaving.

If you like sweets can you substitute either fresh or frozen fruit as a snack or part of a meal?  I like to take frozen fruit – like peaches, blueberries, etc. and put it in the microwave for 4 minutes until it thaws out and gets warm.  I either eat it plain or eat it with old fashioned oatmeal for breakfast.  I am a person who really has a sweet tooth but I have cut way back.  I seldom have chocolate in the house.

Hope you are having a good weekend.

Marianne

[Marianne]

Congrats John on getting insurance approval for Ofev.  I don’t have any advice for you as I am not taking any meds at the present time.  Hope you have an easy time adjusting to it.

Marianne

[Marianne]

Mark ( @mark-koziol ) –  You must have a much higher pain tolerance level than I do.  The VATS was only the 2nd time I have ever had surgery.  The first surgery I ever had was an emergency C-Section in my mid 30’s for the birth of my second child.  The day of the VATS surgery was a really rough day.  Surgery was about 45 minutes late getting started.  Surgery took about 1 1/2 hours plus they did a bronchoscopy.  The scope did not show any nodules on my trachea.  So that was great news.  They told me when I was in recovery I told the nurses that I got hit by a truck.  I remember telling them that when I got into my room.    I was so glad when my kids said they had plans for dinner. I have 2 adults kids who live in different states so they don’t see each other very often.  I was exhausted.  The first 24 hours I was in constant pain.  I thought about you saying that you had no pain only mild discomfort.  I fought the nurses on giving me narcotic pain meds.  I finally agreed to the Oxy.  I am still in a bit of pain but try to stay with over the counter meds during the day and take the Oxy at night.  Today is better.  The past 2 days have been rough – constipation and pain.  I am not doing as well as I need to on the breathing machines – Vibra Pep – is good.  Voldyne is not as good.  My friend who is a nurse said I need to get those numbers up higher.    At least I am not coughing as much as before surgery.  The surgeon said I should have results in about 10 days.  So I still have a bit to wait.  She will call me with the results as I don’t go back for staple and stitch removal until May 28.  On May 24 I have an appointment with my pulmonary doctor.  I am sure we will discuss which ILD and treatment plan.  My oldest child who is a DVM talked to a friend who referred her to a cardiothoracic surgeon.  That surgeon knew of my surgeon.  Guess that aren’t alot of cardiothoracic surgeons in the US.  He told her my surgeon was very good.

Hope you are having a good day.

Marianne

[Marianne]

Does anyone with ILD disease follow a vegan diet?  Because I was overweight I began eating vegan Sept. 2018 and have lost 40-41 lbs.  I feel better.  I would love to lose an additional 10-15 lbs.  I am not a fan of some vegan foods so I don’t eat those items.  I know this is off topic.

 

Marianne

[Marianne]

Charlene –

Thanks for thinking of me.  I will let you know how I do.  Good luck with your doctor appointment Friday.  I hope you get some answers to your fatigue.  These lung diseases are not fun.  You are so young to have been diagnosed with a lung disease.  They are telling me I am young for lung disease and I am in my mid 60’s.  I have 2 adult children who are older than you.  I can’t imagine them facing an ILD in their late 20’s or early 30’s.  I never answered so many questions to determine why I have an ILD.  I have accepted that I will probably never know the answer to that question.  Just taking one day at a time and trying to live my life to the fullest.  Have you taken your trip to Hawaii yet?  If so, was it everything you hoped it would be?  Awhile ago I adopted eating vegan and lost around 30 lbs so far.  I feel better.  Not sure if this helps or hurts with an ILD.  Sometimes I cheat and eat small amounts of chicken in a salad.  I have some friends who think I am crazy but it works for me.

Regards,

Marianne

[Marianne]

What doesn’t sit well with you?  Your disease diagnosed as idiopathic?  Hope you are soon feeling better and get some answers at the lung doctor Friday.  I have an ILD but they don’t know which one.  I really doubt I will ever know the cause of my ILD.  I have been doctoring since Sept 2018.  So far testing has ruled out some things.  I am having a VATS surgical biopsy on Friday to get a specific diagnosis.  Doctors are leaning towards either IPF or NSIP.  So far only have chronic dry cough, sometimes fatigue.  No medicine or oxygen so that is good.  Keep us posted.

[Marianne]

Charlene –

I agree with the lugging stuff with me.  I am constantly taking my laptop and purse with me to work.  Some days are better than others.  When I have to do walking especially stairs some days I have to stop a couple of times.  I am not currently on oxygen or taking any medicine for ILD.

Marianne

 

 

 

 

[Marianne]

Mark & Charlene –

Thanks for your replies to my earlier post.  I too am hoping I stay stable for awhile.  I have had the cough for 5 years and my former doctors kept telling me it was acid reflux.  I know my cough is worse when it is winter time and very cold outside.  I also recently found out I have allergies to most grasses, some trees, dogs and cats.  So far I haven’t noticed much difference than before I knew I had allergies.  I will need to pay attention and see if my coughing is worse when outside this spring and fall.

Hope you are both having a good day today.  Weather is beautiful today in Ohio.  In the low 80’s.

Marianne

[Marianne]

Hi all –

I thought in the USA that most transplant centers will not even consider a person over 65 years of age.  But I see that many people over 65 either have or are being considered from lung transplants.  I am still in the early stages.  No medicine and no oxygen.  Just have this chronic dry cough.  Currently scheduled for a VATS lung biopsy on May 10 to determine specific ILD.  They are thinking either IPF or NSIP.  Doctors have not discussed lung transplant as an option.

Marianne

[Marianne]

I had cats for years.  I don’t currently have any pets.  I recently tested highly allergic to dogs and cats.  I assume having a pet would not be a good idea for me.  I always figured I would get another cat but think it would not be a wise decision.  I also tested allergic to various grasses and trees.  I have not discussed adding a cat or dog to my family.

[Marianne]

Hi Everyone –

Live in Columbus, OH area.  I am 66 years young.  I receive care at The Ohio State University Hospital.  I am not in a local support group.  I know they have some available at OSU and probably around the area.  I still do not yet have an actual diagnosis.  The doctors feel it is either IPF or NSIP. I am scheduled for a VATS biopsy in early May.  I started out doctoring with a different pulmonary doctor but switched to my current one at OSU.  He wants me to get the best care possible and has been more persistent in getting answers.  I am in the early stages so my doctor thinks I am an excellent candidate for the biopsy.  Only symptom is I have a dry, chronic cough which has been going on for a few years now.  I have been doctoring non-stop since September 2018 – primary care, allergist, ENT, pulmonary.

 

Marianne

[Marianne]

Charlene –

I have an ILD.  Scheduled for a VATS biopsy to learn which one.  I like having another person present when I go to various doctors.  If my family cannot go, I have various friends who have offered to go with me and be another “set of ears”.  Lots of friends have told me to call them if I need anything.  Only indication I have is a dry cough plus CT scans of my lungs are not good.  Feel pretty good most of the time.

One thing I enjoy doing for others and have done for the past couple years is to buy flowers and give them to another person.  Sometimes I give them to a friend and other times a stranger.  It gives me more pleasure than it does them.  A local grocery store near me often discounts flowers and I try to get them on sale.  Sometimes I just give a person one flower and tell them to have a blessed day.  We never know what another person is going through in their lives.  Sometimes just a smile and a hello works wonders.  I always remember my mother telling me to give flowers to the living.  So I try to follow through on that perhaps in memory of her.

Hope this inspires someone else to bring some sunshine into another’s life.

 

Marianne

 

[Marianne]

John –

I totally understand you feeling the way you do.  I don’t yet have a definite diagnosis.  I have been doctoring since Sept 2018.  I have been through all the tests except for a VATS surgical lung biopsy – which is scheduled for May 10.  I definitely have a Interstitial Lung Disease (ILD) but they are not sure which one yet.  The doctors are leaning toward either IPF or NSIP.    IPF has two drugs approved by the FDA.  NSIP has no approved drugs.  They treat with steroids.  I too am questioning whether to take the medications.  I am not currently taking drugs for ILD and not on oxygen.  Basically, I have a dry chronic cough which go worse last fall.  You will make the right decision for you.  Marianne

[Marianne]

Charlene –

I went to Hawaii years ago when I was in my mid 20’s.  Maui is also beautiful.  Had a great time there.  I am sure it is changed much but the islands are beautiful.   Have a great vacation or holiday.   Would love to visit again sometime.  Not in the cards right now.

Marianne

[Marianne]

Has anyone tried acupuncture to help with the cough? That was recently suggested to me by my massage therapist. He did not know if it would work but thought it was worth a try. My chronic cough seems to come and go. Much worse as the day goes on. Quality of sleep at night is affected by the cough. Some nights are not bad, others not so fun. Not diagnosed yet which a particular ILD. Doctors are thinking either IPF or NSIP. Fairly healthy at this point. Doctors want to do a VATS biopsy to hopefully figure how which ILD. I was told I am in the early stage right now. Only on BP, thyroid and Vit D3 meds at this time.

[Marianne]

So you recommend having the VATS procedure?