[Taleena Koch]

Thank you Sue.  Yes, I was on (what I consider) a fairly high dose.  If memory serves me, around 20-40 mgs at any given time.  At the time, I had no idea about the side effect of hunger.  I didn’t realize for a very long time that I was eating so much due to this medication.  I am a foodie anyway, so it didn’t seem odd to me – until we went out to dinner one night at the Outback and I had a salad, bread, a 20 oz steak and a baked potato and was still hungry.  That night I started researching why I could be so hungry.  Once I realized it was the prednisone, I ignored my hunger (that was hard to do).  Once off of it, I realized that the extreme hunger went away.  I have been on it a few times over the years for short courses and have done fine.  But boy, long term was a nightmare.  My mom was on it for quite a long time as well – at fairly high doses – and also gained weight and had the moon face.  She was finally weaned down to a maintenance dose of 5 mgs per day and did a lot better with her eating.  It’s a great drug for what it is needed to do (reducing inflammation) but a crazy drug for it’s side effects.  I am glad you are not having problems with the side effects and are able to control the hunger.

[Taleena Koch]

After nearly 2 years on prednisone I gained 100 pounds (due to extreme hunger and never feeling full) plus increased cortisol production, extreme irritability, shakes (and I already have a tremor so it got markedly worse), and fortunately no bone density loss (I had a DexaScan to check bone density) and no diabetes (checked for that with blood testing).  I also got the round “moon face.”  Once I was able to stop the prednisone (which took some time to wean down) the moon face started to go away.  The weight gain was difficult to get rid of.  I dropped the first 50 pounds pretty quick just by not drinking soda and not eating after dinner.  The last 50 pounds has never left.  Good luck if you have to be on prednisone.  Talk to the doc and pharmacist about side effects and how to manage them.

[Taleena Koch]

Great article Mark!  I have a question about boosting the immune system in one with a lung transplant.  It is something that comes up quite often.  Since those who have had a transplant are immunosuppressed, would boosting the immune system (say with diet) counteract this and cause potential problems with organ rejection?

[Taleena Koch]

I would definitely suggest calling your doc.  Also, check your oxygen saturation with your finger pulse oximeter.  Low oxygen saturation can cause headaches.  I hope your doc can help you find some answers and get relief.

[Taleena Koch]

We ALL need to be loud!  Speak out!  The best way to raise awareness about PF is to be active in talking to everyone you know.  Your voice may help someone in getting an early diagnosis for them or their loved one.  #LIVEwithPF #WHATMAKESMERAREPF #RareDiseaseDay

[Taleena Koch]

@brian-sowter

Hi Brian.  I am sorry for the late reply.  I just today received a notification from the PF News Forum system that I had a reply here that I was tagged on.  Gotta love technology.  🙂

The GERD issue has become a hot one. Back in 1999, Dr. Ganesh Raghu (one of the world’s leading experts in PF) wrote a paper about GERD and PF.  It wasn’t well accepted at the time. Over the years, as other docs around the world started learning more, they all jumped on the GERD/PF train.  So now it is widely known that GERD could be a major cause (though not studied enough yet to prove it – it’s a theory in the PF medical community) and is certainly an exacerbating factor in the spread of PF.  Patients should all be evaluated for GERD and treated should they have it.  And most have it.  Let’s face it, I think most of us in the world have it.  Treatment can range anywhere from dietary modifications to medications to a Nissan Fundoplication (surgery to tighten the esophageal muscle at the stomach when the muscle isn’t tight enough and is allowing for reflux).

I can send you Dr. Raghu’s paper and you can also google and find more information.  If you do this, look at the ATS website (American Thoracic Society) and also at the NIH website for good, valid and trusted information.  But yes, GERD is a factor and it does lower DLCO.

If you want to contact me privately, my email address is [email protected].

[Taleena Koch]

I totally get what you’re saying.  The unfortunate reality is that everyone is dealing with something and it is ‘their reality’.  Each person’s life doesn’t stop sucking just because they know someone worse off than they are.  The important thing for everyone to remember – and sometimes we all need a reality check on this – is that there is always someone out there who has it worse than us.  Yes, it is easy for each of us to get wrapped up in what is bothering us at the time.  We all need an outlet to work through it.  Whether that outlet is a friendly ear and shoulder to cry on or venting in a support group or going out in the middle of nowhere for a good scream.  Problems are problems.  But yes, when we are going through something difficult – especially when it is something as difficult as IPF/PF and we know the end result of this – it’s sometimes hard to have compassion for others whose problems are not life ending.  It is however important to recognize that each person has something they’re going through and when possible, help them through it.  (Sometimes this helps us take our minds off our own problems too.) However, sometimes this requires more mental energy than we can give.  I personally have never had to deal with a life threatening illness living in my own body.  But I do live in chronic pain.  There are times when even I feel like saying to someone “stop whining, at least you’re perfectly healthy and you can do anything physically that you want to do”.  I also remember when mom was alive – but I knew she was not going to be for long – and there were times when I wanted to scream at people “AT LEAST YOUR MOTHER ISN’T DYING!”  Moral of the story – we each have our own reality that we are living in.  It’s not a competition.  Compassion for others is important.  There are times when our own lives suck so much that we just don’t have the compassion in us.  It’s important for those close to you to also try to be more empathetic to your struggles.  Hopefully when they read your story, they will be.  #LIVEwithPF

[Taleena Koch]

@wendy-dirks

Hi Wendy.  As the caregiver (former caregiver) I do hope it’s okay if I interject my thoughts on this.

First of all, before I go to that, I do want to say as someone who lives with chronic pain (back, knees, and feet) I totally understand the difficulty of the holiday season.  Each year gets more and more difficult.  Last year, it took until the end of April before I finally chewed off that bite and got the tree and ornaments all put away and took down the Christmas village, packed it up, and put it away.  It is such a long process – both getting things put up and taking them down.  I have help as well from my husband and occassionally from the adult children.  But it’s still a lot of work and stress.

Now… why do I keep doing it when it causes me pain and fatigue and emotionally, it just drains me?  I do it because in 2009 I lost my mom to IPF.  In 2008 – her last Christmas alive – I didn’t get to spend it with her.  We had a huge snowstorm and living here in the Pacific Northwest, everything shuts down.  I had no way to get to her house (a 15 minute drive from me) to bring her here.  We didn’t have a 4 wheel drive vehicle at the time.  Hind sight is 20/20… I wish I had moved Heaven and Earth to get her and bring her here.  Had I known it was going to be her last Christmas, I would have.  To this day, it is one of two major regrets I have.  (The other regret is that I never finished her scrapbook from our cruise together many years before.  She never got to see it. I still haven’t finished it.  It’s a difficult thing for me to even entertain as I was working on it the night she passed away.  I ran out of that room and to the hospital.)

Anyway, I digress.  So should you put up the decorations next year?  You should get help.  Why?  Because we don’t know when it will be our last time here on Earth.  For your loved ones, who are left to pick up the pieces, it might be important to them.  Especially to your husband.  And to you, even though it is work – it brings good memories and makes your heart warm and fuzzy.  🙂  Even though those close to you may currently say “It’s not important to me”… they may (most likely will) change their mind once you are not around.  We have no idea what we are going to feel when our loved ones are gone.  I can attest to the fact that is so true.  When I finally lost mom, suddenly small things became VERY important.

I would suggest however that maybe you scale back.  This is one thing mom did.  She had a small tree that she took out of the box and put up every year.  It was pre-lit.  It didn’t require a lot of decorations.  It was easier for her to manage.  This year, I even added a small tree to my home (in addition to my regular tree).  It is beautiful and brings me so much joy.  I have many times thought “this is my future and it’s okay.”  🙂  For shopping and gift giving, mail order and deliver.  Keep it simple.  Then all you have to do is wrap.  Don’t do a lot.  Do what you can manage.  But if it’s important to you, if it brings you joy, do it.  Just make some changes to make it work for you.

But please… celebrate those special times.  Also remember that literally every day is a special day.  Take time to be with your loved ones.  TALK to them about things that are important.  Tell your kids about your life growing up.  Oh how I wish I knew more about moms – and I know a lot already but would love to know more.  Time with loved ones is what is most important.  🙂

I am so glad I read this from you today.  I am always wanting new ideas for my support groups.  This has made me realize that I need to write up something on ways to make the holidays easier for my patients who are living with this disease.

Bless you and your loved ones.  I hope you choose to continue celebrating but that you find ways to do it such that it doesn’t take so much out of you physically.

[Taleena Koch]

Raising awareness is SO important and for years, we have been trying to get an alignment on colors.  Years ago, the PFF had blue and red and then they changed to the blue and green they have now.  I tried to align the Breathe Support Network with the blue and green as well, and so have the pharma’s.  However, much of the rest of the PF world is blue and red.  We need to band together as a worldwide society and pick a color scheme.  And with the PFF being the leading PF foundation, we really need to get them on board with whatever is decided upon.  I believe the BLF is red and blue.  PF Warriors is red and blue.  Many others are red and blue.  I am willing to make the switch if we can make it happen worldwide.  Now… how do we get the PFF on board and make this happen???

As for actual awareness… everyone use your social media.  Both the PFF and Breathe Support Network are sharing things every single day in September and we both share things all year long.  The PFF is sharing their 30 Facts for 30 Days campaign and Breathe Support Network is sharing 30 Ways to #LIVEwithPF.  The PFF has their 30 Facts on their main page in Facebook and Breathe Support Network has their 30 Ways on their main page in Facebook as well as on their website (www.BreatheSupport.com).  Both are great resources for finding information about PF to share.

Wear your PF shirts, wristbands, etc. if you have them.  The PFF has a shop where you can purchase these items.  The Pulmonary Fibrosis Association (in Texas) does as well.  Their website is http://www.pfassociation.org.  Breathe Support Network also has #LIVEwithPF wristbands for sale and is working on shirts and window clings for the near future.  Other entities out there may also have PF logo wear items for purchase.  I always try to purchase mine from places where I know the profits are going to help with PF research or helping patients and families in some way.  For instance, the PF Association in Texas funds oxygen for patients who don’t have insurance coverage for it so when you purchase shirts or wristbands from them, you are helping to provide oxygen to patients who need it but don’t have the financial means.

Be creative.  Plan a local fundraiser of your own.  If you need materials to distribute, you can get those from the PFF and the Breathe Support Network.  You can also do fundraisers on Facebook now.  Those are easy and you’d be surprised how many of your Facebook friends are willing to give $5 to help.

Speak out about PF.  Many aren’t comfortable talking about their disease or their loved one’s disease.  Get comfortable.  The ONLY way we are going to find a cure for this wretched killer is to talk about it.  If we try to hide it, we get no where.  The Breathe Support Network has a fact sheet you can download and print out (3 on a page) and you can hand them out to people.  Be loud and proud!  #LIVEwithPF!  Help in finding a #CureForPF!

[Taleena Koch]

There can be many reasons for a decline in DLCO, but he does need to talk with his doctor about this.  If he isn’t going to be able to see his pulmonologist for awhile, he should email in his medical portal if his clinic has one.  (Many do now.)  Otherwise, he should call and ask for a call back from the doctor or one of the staff to discuss this decline.

DLCO (Diffusing capacity) is a measure of how well the lungs are doing the gas exchange – exchanging the co2 (carbon dioxide) in the blood for oxygen.  As the lung tissue stiffens from fibrosis, there is less and less gas exchange being done so the co2 in the blood is higher.  The need for supplemental oxygen typically increases as well.  The supplemental oxygen won’t take the co2 out of the blood, but it will help to get the right amount of oxygen to the brain, heart, other organs – to the entire body.

DLCO does decrease as fibrosis spreads so this decrease could be due to a progression of the fibrosis.  It can also be affected by other factors such as other lung problems (copd, etc) and even GERD.  Does the patient have untreated GERD possibly or maybe GERD that has worsened?  There are many factors that can affect DLCO so it is important for the patient and doctor to have a conversation about this and try to find out why his DLCO decreased substantially.

In the mean time, it is important that the patient is getting adequate oxygen so he should ensure that he is using a liter flow that keeps his saturation from falling below 90%.  If this is higher than prescribed, he should tell his doctor that he needs additional testing to see what his new need is.  While waiting for that, he should be checking his oxygen saturation with a finger pulse oximeter and making note (on paper or electronically) what his results are:  Date, time, saturation and heart rate, activity (sitting, walking, going up stairs, etc), duration of activity when he checked saturation, and how he was feeling (dizzy, lightheaded, chest pain or pressure, etc).  This way he can show his doctor what is truly going on.

Important things to note about finger pulse oximeters:  They can be off by +/- 3% so a reading of 90% is anywhere from 87% to 90% and some are better than others at detecting the reading right away so keep it on for a couple of minutes to ensure a good read.  When taking oxygen saturation during activity, it is important that it is DURING activity.  Oxygen normalizes in PF patients quite quickly after activity is stopped so if they stop, sit down, and then take it, they won’t have an accurate “during activity” reading.  Lastly, If the patient has something like Raynauds and it causes cold fingers, there are forehead and earlobe oximeters that can be purchased, those they are more expensive than the finger pulse oximeters.  They can also try to warm their hand up first using those disposable hand warmers that people use in cold weather or they can use a heated towel, heating pad, etc.  Get the fingers warm and then take the reading.

[Taleena Koch]

Another great resource for support for patients and loved ones is the Breathe Support Network at http://www.BreatheSupport.org.  The Breathe Support Network has 6 groups so there is something to fit everyone’s needs.  We have the main group, which is for anyone interested in or affected by PF, there is a patient only group, a caregiver only group, a lung transplant group for anyone interested in or on the lung transplant journey, a hospice and palliative care group for anyone interested in or already using hospice or palliative care, and a grief group for those who have lost someone to PF.  The Breathe Support Network is a safe place for everyone on this journey.  We can never have too many support resources out there.  #LIVEwithPF

[Taleena Koch]

Another reason some may not be prescribed Prednisone on a regular basis is because they have IPF – the idiopathic form of PF.  It is now known that Prednisone does not usually do a lot of good in those with true IPF as there is not much inflammation.

[Taleena Koch]

Charlene and everyone dealing with PF… I would recommend the PFF Summit in San Antonio in November if you can.  I have been to the Summit multiple times and not only is it a GREAT educational experience, it is also so wonderful to meet others in the PF community face to face.  There are a LOT of patients and caregivers there and it’s always so good to finally put a face to a name.  🙂  I hope you can make it!