[Marianne]

Karen –

Thanks for the note about BP.  I do monitor BP at home.  My BP is usually pretty good at home and at the doctor’s office.  Not sure why it was so high that day.  I did not know I was doing the 6 minute walk test until about 20 minutes before I did it.  Originally, my doctor was booked solid until the following month for the 6 MW test.  They had a few people cancel that morning so I was able to do the walk right behind my PFT and before my blood work.  I have blood work – liver panel – every 3 months to monitor my liver because of taking Ofev.  So far liver panels have been fine.  I have PFT and see my pulmonary doctor every 6 months.  Also, see my PC every 6 months instead of once a year.  Hope you are having a good day.

Marianne

[Marianne]

@lizzie

Elizabeth –

From what I understand most of POC go up to 4 or 5 liters.  There might be some newer units that go up to 6 liters.  In the US if you are on Medicare as primary insurance you can rent an older POC unit.  If you want a newer model, you must either rent it yourself or buy it outright.  They are great for walking and exercise but with the battery pack many POC units in the states are 5 to 7-8 lbs.  I was told that by one oxygen supplier in Ohio that person needed to be prescribed oxygen 24/7 to qualify for a POC.  I am not yet on oxygen 24/7 and I qualified for a unit.  I am not sure what brand unit I am getting until it arrives.  I am still waiting to hear back from oxygen company that it has arrived at their facility.  My oxygen supplier does not keep POC’s in stock because they are expensive and I assume many patients most go with the gas cylinders or oxygen.  My doctor prescribed the POC because I exercise at the gym and like to take long walks.  It is much more convenient that pulling a large tank of oxygen behind you on a cart.  I also have the smaller cylinders that are worn either on a backpack or a shoulder harness.   Hope this helps.

I know someone from overseas recently purchased an Imogen 5 or 6 POC unit.

Marianne

[Marianne]

Hi all –

I don’t have a caregiver yet.  I recently went on oxygen upon exertion.  I am still able to live by myself.  I have 2 adult children.  One lives 1 hour away from me and the other lives out of state – about 8-9 hours away.  My children have never wanted to take about my IPF before.  Now the one who lives 1 hour away wants to discuss me either moving closer or moving in with his family as my disease progresses.  I have mixed feelings.  First, I am not yet ready to give up my independence until I absolutely have no option option.  I have tried to talk to them in the past but they have shut down the discussion saying I will live forever.   I have lived in my community for 37 years and have many friends here.  We have a very small family.  I have talked about moving to assisted living if needed.  I put all my legal paperwork in order before I had my official diagnosis.  I have always been an active person.  I don’t like to stay home.  I love to be out and about.  Visiting family, friends, running errands, etc.  My children are concerned that if I go to assisted living facility I will be required to turn over all my assets to the facility.  I realize some are set up that way but not all of them.  I really don’t think living with my either of my kids is a good idea.  One is a single professional (female).  The other is married with toddler not yet 2.  Both children have pets and I am allergic to  dogs and cats.  I am not opposed to moving closer to the one who lives 1 hour away.  Any suggestions from either caregivers or fellow patients would be helpful.  I believe they are concerned as my son’s wife’s grandmother recently passed away.  She was younger than I am and was on oxygen 24/7.  She had lung cancer.  Thanks for reading this long message.

Marianne

 

[Marianne]

Hi Char and everyone –

Update. I was getting so frustrated as oxygen supply company was not returning my calls I just stopped by their office yesterday to get some answers.  The POC has been ordered but has not yet arrived.  It doesn’t appear that it has been shipped yet.  I talked to a supervisor and voiced my opinion that they needed to return customers phone calls.  Since I was basically out of oxygen they gave me a 6 pack of small tanks of oxygen.  They gave me a shoulder pouch to carry 1 canister over my shoulder.  So at least I now have some oxygen.  They first informed me that since I was not on oxygen 24/7 I did not qualify for a POC.  When they checked their records, they said I did qualify.  I am guessing my doctor wrote the prescription so I would qualify for the POC.  Apparently, in the US it is taking awhile to get the POCs to the oxygen supply companies.  They informed me that is not an item then keep in stock because it is too expensive.  Hope everyone has a great weekend.

Marianne

[Marianne]

Hi all –

Most recent news concerning getting a POC from oxygen supplier. I got a telephone call on Monday 4-26-21 from oxygen supply company that they agreed with my pulmonary doctor that I “qualified” for a POC.  It would take 3-4 days to get one to me.  They will call back when they have a unit available.  So hopefully I will have a unit sometime this week.

Hope everyone is having a good day.

Marianne

[Marianne]

Vince –

Sounds like your mum is getting the care and oxygen she needs.  I am in the US and having trouble getting the supplemental oxygen my pulmonary doctor prescribed.  It was prescribed March 5.  Apparently, there was some confusion as to what paperwork was needed.  The paperwork has down been sorted.  The oxygen supplier is waiting for verification from their company whether they approve or deny the type oxygen the doctor prescribed.  I do not yet need oxygen 24/7.  My doctor wants me to have portable oxygen concentrator, small refillable gas cylinders a nd a  machine to refill my own tanks.  I currently have 1 large tank on a pull behind cart.  I am to use oxygen on exertion – at gym and on long walks.  Also dealing with Medicare as well as supplemental insurance.  I realize this is an entirely different situation with folks across the pond.

Marianne

[Marianne]

Cough comes and goes.  Think it is a result of GERD and IPF.  Sometimes a cup of hot water with lemon helps.  I also have allergies but not food related.  Some things that seem to set off my cough is laying down flat to sleep or rest, talking, drinking tea or a drink with caffeine (assume because of GERD).  Rarely does a day go by that I don’t cough.  Sometimes cough so much that I vomit.  I do use cough drops or lozenges.  Hope this helps.

I have had the cough for at least 5 years before diagnosed with IPF.

Marianne

[Marianne]

Don’t have that issue but walking and exercising with a 10 lb. bottle of oxygen behind me is not fun.  Still fighting with oxygen supplier and hope to get POC soon.

Marianne

[Marianne]

Sam –

Would it be possible for your head to be elevated with a pillow to get a scan?  Can you lay on your back at all?  I very seldom sleep on my back.  I can not lay flat because of GERD and IPF.  When I go to the dentist I have to have my head elevated when they clean and examine my teeth.  I also cannot lay down flat to get a massage.  I must either be on my stomach or on back with my head elevated.  I have a cough that comes and go but trying to lay flat almost guarantees I will start coughing.  My pulmonary doctor does not have me do CT scans or chest xrays.   After I was diagnosed 2 years ago in May he told me no scans of any kind unless he ordered or approved them.  I told this information to my primary care.  Pretty sure pulmonary keeps tabs on my lungs with PFT and 6 minute walk tests.  I recently went on oxygen 2 lt upon exertion.

Marianne

P.S.  Note to Char – I really don’t like the PFT or 6 minute walk tests.  But they are scheduled every 6 months.

[Marianne]

Hi everyone –

I find it very interesting that so many of us are having body temperature issues.  I also find it I have more coughing that it also affects my body temperature – it makes me sweat and have a higher body temperature.  I recently started oxygen on exertion.  I do not yet need it at night but I am getting close.

Wow – it seems like more of us are having this issue than I suspected.  Neither my pulmonary or primary care doctor have an answer to my fluctuating body temperatures.  I also have thyroid issues but they are controlled by medicine.  Recently had blood work done to check thyroid levels.  They were fine.

Marianne

[Marianne]

Bernard –

Sorry you are having issues with IPF and doctor availability.

I am in the US.  I was diagnosed in May 2019 with IPF.  I see a pulmonologist at a local teaching hospital which has a lung clinic.  He has been wonderful.  I currently see him every 6 months and have PFT every 6 months.  Blood work every 3 months.  My doctor always is available to answer questions – either by email or phone.  He takes his time each appointment.  My last appointment with him lasted 25 minutes.  I have had appointments that last 45 minutes.  I take OFEV and was recently prescribed oxygen on exertion.

There should definitely be someone that you can call, text or email as needed.

Hope this helps.

Marianne

[Marianne]

Sree –

Pulmonary rehab is excellent.  My doctor prescribed it and it was covered by my insurance.  I am in the US.  I believe I was on Medicare at the time.  My prescription was 3 times a week for 8 weeks.  Part of the class was learning about the various lung diseases and the other half was exercise.  We basically worked on treadmill, arm machine, bicycle, elliptical and did stretching exercises with light bands and lifted light weights – 1 to 8 lbs. each.  My class had various aged people from 30’s through in the class.  Some had IPF, COPD, cancer and other lung diseases.  Some were on oxygen and some were not.  Everyone in my class improved their health.  Some entered class on oxygen and left not needing oxygen.  Some people went to rehab a few times – lung and heart issues plus after transplant surgery.  Many times you don’t know which disease the others have.  I know that another man and I had IPF.  He was on oxygen and on the transplant list.  I know because one of the nurses told me to talk to Frank because he and I both had IPF.  I was able to take the rehab classes at the same place where my doctor is located.  Hope this helps.

Marianne

[Marianne]

Christie and Char –

Thanks  for the information.  I did not realize that Pulmonary Fibrosis Association helped with oxygen.  That is great to know.  My problem isn’t insurance coverage as I have Medicare plus a Supplemental Policy.  The problem is that the oxygen company does not want to supply what the doctor prescribed.  It is just frustrating as the oxygen supplier seems to want to decide what the patient needs instead of filling the order as written by the doctor.  It will eventually all get worked out.  I have talked to a few people in the US who have had the same issue with the oxygen supply companies.  It doesn’t help that some of the local oxygen supply companies do not accept Medicare patients.  OK, that is my rant for the day.  Hope everyone has an excellent day.  Weather is beautiful again here in Ohio.

Marianne

[Marianne]

@warlock

Bill Kelly 0

Thanks,  I did not know this fact.  I researched and it looks like there are only 2 companies in my area that charge the Medicare approved amount and accept assignment for oxygen costs).  One of them is on the list which my pulmonologist gave me .  I will check with them.

Marianne

[Marianne]

Hi everyone –

Update on oxygen levels.  I have been using supplemental oxygen 2L when exercising and on long walks.  Pretty sure I am going to have to start using it more as I am dropping my oxygen levels when taking a short walk, plus running short errands – like to the grocery, etc.  I am still having issues with my oxygen supply company not providing what my pulmonary doctor ordered.  I called and email my doctor this week to hopefully get the oxygen I need.  When the oxygen supplier delivered my oxygen on March 10 they gave me one skinny gas cylinder tank and it is almost empty.  From talking to people in my area on oxygen, the companies that supply supplemental oxygen don’t go out of their way to provide good service.  One person waited 9 months for a POC .  It seems like all these companies try to decide what they think the patient needs instead of what the doctor orders for the patient.  It is very frustrating.  But others I have talked to locally have gone through the same process.  Some of the local supplier do not provide oxygen to Medicare patients.  Is anyone else that is in he US, having problems getting the oxygen as prescribed?  I live in Ohio.

Marianne

[Marianne]

Hi all –

None of my doctors said anything about 3-5 years to live.  My pulmonologist warned me about the information on the internet.  Shortly after diagnosis – about 8 months I went on Ofev.  I  not all doctors are telling patients that they only have 3-5 years to live.  There are people on this forum who have lived much longer than 5 years.  I think it is an individual case by case.  I believe that some people are diagnosed earlier than in the past.  I believe attitude has much to do with one’s health.  You need to advocate for yourself.  I have many friends who are seniors like myself who have much worse health and diseases than IPF.  Eat healthy, have a good attitude, help others when you can, exercise if you are able.  Have a positive outlook on life.  I know this is not easy but it makes living so much better and fun.

Marianne

 

[Marianne]

Hi Rajesh –

Have no idea.  I find it interesting that the Ofev stopped your mother’s cough.  I have been on Ofev about 1 1/2 years now but it has not stopped my cough.  I also have acid reflux so that might be part of the reason for my cough but my doctors have stated the cough is from IPF.  Actually my cough has been getting more frequent.  I have more issues with the cough  when talking or later in the day.  I do not take any cough medicine.  I sometimes use various cough drops or use candies – like Lifesavers.  I also drink water frequently.  Often times I will heat a cup of water and drink the warm water which seems to help my throat.

Marianne

[Marianne]

Hi all –

Any suggestions as to what to use to help with a dry nose?  I am not yet on oxygen at night.  I run a cool mist humidifer at night but still wake up with my nose very dry.  Doctor suggest KY Jelly and it seems to help a bit.  Have read somewhere that sesame seed oil is recommended.  Has any one tried it?  Saline mist nose spray?  I wear contacts and am wondering if oxygen use is going to dry out my eyes and I will not be able to continue to wear them.  I have worn them for many years and mine are a hard Boston lens.  Thanks for any suggestions.

Marianne

[Marianne]

Susan and Christie –

Thanks for the information on oximeters.  I live in Ohio – which is a bit cold in the winter.  The walk where I had the issues with the oxygen levels in the low to mid 80’s up to around 95 was on a warmer day around 60 degrees here so it was not the case of cold hands.  I am not underweight.  I actually need to lose some weight.  My oximeter is giving me swinging numbers while inside too.  I am going to purchase a new one on Amazon.  The Avax looks like it is not available in the US.  My oximeter which measures the same as the doctor’s.  I was told by a nurse at my pulmonary practice that oximeters can range 2-3 points in either direction.   I have a ZacURate oximeter.  I totally understand about the temperature.  I have gone on walks when temperatures were cooler and not been able to register my oxygen levels at all during the walk.  I have a feeling that it is not long before I am on oxygen at night and possibly 24/7.  Played with my grandson (15 months old) and oxygen levels dropped to 88.  I carried him upstairs to his bedroom to take a nap and I was winded.  I do not yet have a POC and did not feel like lugging a tank on wheels up the steps as well as my grandson.

Have a great weekend.

Marianne

[Marianne]

Charlene –

Thanks for the reply.  I notice I am getting more short of breath when not doing much at all.  I have a feeling that oxygen at night and perhaps 24/7 is in the not too distant future.  I have a grandson who weighs around 27-30 lbs.  I get very short of breath if I carry him upstairs to his bedroom.  I visited with him and my son today.  I tool my oxygen along but did not use it.  My oxygen levels dropped to 88 when I wasn’t doing much of anything except playing with my grandson.  I did not go on a walk today as visited with my grandson and also stopped .by for a visit with my friend and former boss.  We worked together for 34+ years.  I had not seen him or his new office since Dec. 2019.  We had a nice visit but I was tired when I got home.  I find I have more energy in the morning than later in the day.  My last walk outside my oxygen levels were all over the place.  According to my oximeter I was dropping into the mid 80’s with oxygen.  I am ordering a new oximeter to see if my current one is defective.  Have a great weekend.

Marianne

[Marianne]

Hi everyone –

I did an overnight oxygen test.  For now, I don’t need to add oxygen at night but doctor told me I was very close to needing it at night.  I know my numbers dropped into the 80’s overnight but came back up before 5 minutes.  My understanding is if your numbers drop below 89 and stay there for 5 minutes, then supplemental oxygen is needed at night.  Beautiful weather here yesterday and went for a long walk outside with oxygen.  According to my oximeter my oxygen levels were all over the place from 85 to 95.  Not sure if I need more oxygen than doctor prescribed.  I am going to order a couple new oximeters today from Amazon.

Also coughing more and my voice is very hoarse – with be acid reflux.  Have a hoarse voice about once a week right now.

Hope all is well with everyone.

Marianne

[Marianne]

Vishal –

Thanks for letting us know.  Keeping your dad and your entire family in thought and prayers.  This is a difficult disease for the person with the disease as well as their family.  I agree with Cindy that your love shows through in your posts.

Marianne

[Marianne]

James –

Check with your pulmonary doctor to see if there are any local support groups in your area.  I am in Ohio but in a local support group that meets by Zoom.  They only meet 3-4 times each year.  Before Covid they met in person for a 1 hour presentation and then had lunch.  As I was working full time then, I never attended these in person meetings.  Possibly UCLA or Cedars-Sinani might have groups that Zoom.    Good luck.  We are always here for any questions or concerns.

Marianne

[Marianne]

Hi everyone –

Update from my pulmonary doctor.  He said he will do calculations from my PFT to correlate to RVSP and will get back to me if he feels I need to have a right heart cath at this time.  I am hoping I can avoid this procedure for now.  I am still adjusting to wearing the oxygen when on long walks.  Yesterday I walked .95 mile which took me 30 minutes.  Today I was only able to walk for 20 minutes.  I was really tried after walking 10 minutes but I stayed with it for 20 minutes.  I hope as I get adjusted to the oxygen I will be able to walk 45 minutes to an hour at a time.  Back in the fall before oxygen therapy I could easily walk for an hour.  Not so easy with oxygen.  I am still waiting to hear if I will be a POC from the oxygen supply company.  Hope everyone had a great weekend.

Marianne