Air

Hello Friends and Neighbors,
Yesterday I went to Pulmonary Rehab (note I use their oxygen while I'm at rehab) and after I had coffee with a group member that has had a double lung transplant.  Let me first say I very much admire this person for his courage and I am so glad he is doing well.  Now for my adventure.   After coffee, my friend left and I went to the hospital gift shop to look for a specific item.  While browsing I became aware of being a little short of breath so I decided to leave.  As it happens I was out of oxygen in my portable tank.  I walked to the entrance guessing this is about 50 to 75 feet and sat on a bench to wait for the valet to come back.

The valet came back and someone else walked up to have him retrive his car.  I said "Really, you must be kidding"  I was about 10 ft away.  The valet looked over at me and said "Did you need something?"  I said, "Yes, I need my car I am out of Oxygen."  He said you are out and I said yes the tank is empty.  Now I gotta say if one is to run out of Oxygen the hospital is the place to do it.  This valet ran inside and told me to follow him.  By the time I got back in the door a wheelchair was waiting and the next think I knew 2 hospital personnel and 2 security persons where there to help me.  They hooded me up to Oxygen and let me catch my breath.  I then did have to wait for someone from ER to come over to confirm I was OK to go home.  It was my fault I ran out of air, I forgot to set  the oxygen flow lower while visiting with my friend and the tank is only good for a couple of hours at most set at 4 liters per minute.

Now for my thoughts - while all this was happening and I first got to the bench I kept wondering if I was going to be ok to drive home.  How would I get Ray to me with more oxygen, what should I do, what should I do.  That decision was made for me by this very alert and helpful valet.  I am very surprised at how short of breath I became and how dizzy I was feeling.  I never want to run out of Oxygen again.  It was wonderful of the hospital to let me take a tank with me and just drop it back off.  No One took information except for me name, I did not have to sign for anything and the security guy helped me into the car and put the tank in.  Lori came when I got home and she took the tank back to St Joe today.  Thank you Lori that was so helpful.

Today I have been feeling really poorly.  I am breathless walking slowly across the room with the Oxygen set at 4 LPM.  I have coughed a lot more and I am just really, really tired.  I am not sure if I am coming down with something or if this is residual from yesterday (that's what I'm voting for).  I just don't know.

I did manage to finish all the Christmas Cards and Ray took them to the post office.  Yay!  Some will not arrive on time, but most will.  That's all I did today besides rest.  I was hoping to have Owen and Kate tomorrow to bake cookies, but that probably won't happen at this point.  I am glad I already told them at rehab that I would not be there.

Today I am most grateful for that valet and the wonderful staff at St Joe Hospital.  I learned I need to speak up and I also stopped at my Oxygen supplier and got a tank of non Liquid Oxygen to keep in the car.  I shall never run out again. 
This is probably my last post before Christmas so Merry Christmas one and all.  Thanks for the good thoughts and prayers.
Trust me they are appreciated.  :^)

Lets be Honest

First and foremost I am not doing this for sympathy, nor am I complaining.  I think it is important for those who do not see me often to know what life is really like for me these days.

Most days I am overly tired, (very fatigued). It is hard for me to do my normal activities.  Making the bed (I am not talking about changing the sheets etc, just the daily making) is the worse and I now have to stop and rest twice even with 4 Liters of Oxygen per minute. Today I had to sit down to do my hair because all that arm use took my oxygen and my legs got weak. Still glad I have hair again, but am thinking of a shorter cut to save energy.

 At Pulmonary Rehab on Monday, I walked on the treadmill for 2 minutes, with 4 liters at a speed of 1/6th (damn slow) of a mile per hour.  My blood oxygen level dropped to 84%. Anything below 90 is not acceptable.  Today they kicked the Oxygen up to 5 and after 2 minutes I was at 92.  They still stopped me after 2 minutes to rest.  We are really hoping to improve upon this.

Taking the Oxygen off long enough to pull a top over my head takes all my air. So just getting dressed can be exhausting.  I rest, then try to do a couple things around the house.  Going to the store is difficult at best.  I  have done some Christmas shopping, I go to one store come home and rest, then some days I go again.  It is a slow process, but I am getting there.

I think of dying often and how it will affect the ones I love and I am sad. I cannot stop this process or slow it down, this disease owns me and my body.  I am doing all I can to try to remain active on a daily basis and not just sit down and wait.  It would be easier to just stay in bed or get up and stay on the couch, but I am not taking that route yet.  I do however have to have a nap most afternoons.

Lack of oxygen effects every single part of the body. Once the lungs are scarred with this disease they are unable to move air and there is no way back.  So the capacity that I have lost so far is just plain gone, never to return.

At some point I will not be able to care of myself.  No one knows when this point will be reached, it could be weeks, months or years or tomorrow.  I want it publicly known that when I reach that point I expect Ray to put me in a Hospice facility.  He has picked up all the slack so far around here and will continue as long as I am still ambulatory, but once I am not Hospice here I come.

I try to plan ahead and save my energy for what is important to me and makes me happy and I let the rest go.  Today for the 1st time I used a electric cart at the Meijer store.  I did not like it, but I did do it.  Yesterday I did not make the bed.

I am in hopes that Pulmonary Rehab will help me learn coping skills and help me to move the air I have more efficiently.  We will see.  I have only had 2 sessions.  At this point the plan is 3 days a week till March.

I still see lots of beauty and joy in this life and hope that I really am at another plateau and that I stay there for sometime to come.  I am blessed in many, many way, this disease is just a challenge I have been given.  Life is full of challenges.

I am looking forward to Christmas.  I am also looking forward to the New Year and whatever new challenges I will have.  One year ago tomorrow I was told I had stage 3 B inoperable Lung Cancer, today I am 7 months cancer free.  That my friends is a miracle. 

 Life goes on...................  :^)

 

Can I get an Amen!!!!

Amen!!!!!!!!!!
I met with Dr. Gravelyn today.  I had another Spiro meter test and we have decided that I am at a Plateau again.  Yes, Thank you Lord.  Don't get me wrong this new way of living is trying, but the keyword here is living.  I am not happy with this new way being tethered 24 hours 7 days,  but I don't have to be happy with it, I just need to do it.  I am happy, happy, happy that I seem to be at a standstill again.   Plateau's are good and hopefully this one will last for years.  Could be minutes, hours, days, months or years.  The disease is in total control, but boy am I ever hoping and praying for years.  Everyone wants to get to Heaven, but nobody wants to die.  (Someone wrote a little song about it)!

"It is not for me to wonder why , it is the challenge I have been given."  I read this somewhere and think someone wrote it just for me as I did for a while, wonder why my cancer was cured,  just to have my PF accelerate.  I understand now that I just have to accept it (not like it) and move on along.  I intend to live my life, the best I can.

I am being weaned off the Steroids.  I start the step down tomorrow, still it will take 3 to 4 weeks to be entirely off.  I start Pulmonary Rehab on Dec 6th.  I have an appt on the 3rd to meet the therapist etc.  I will go to rehab 3 times per week for up to 12 weeks.  Dr. G and I discussed the fact that with the Oxy on 4 I am still winded after walking about 20 feet or so.  I am to walk the 20 feet, rest and start again.  So that is what I will do.  I am tired to be sure, but I can and will do all that I want until this disease makes me sit down.  I will need a little help along the way and thankfully I have a great support system with my family and friends.  Ray, really I do not know what I would do without you and I so appreciate your support, help around the house and patience.  I think we are going to make it.  The Spireva did not help so I am not using the inhaler either.

Signing off for now, I am tired and need dinner.   Wishing you all a wonderful Thanksgiving we all have so much to be Thankful for.    Stayed Tuned!

Graditude

I have been writing this entry in my head all week and just have not sat down to write.  I attended my first PF support group on Saturday.  I found it most helpful and the fact that the group is available to me is one of the things I am grateful for.  We talked a bit about Gratitude in group.  It is a fact that if you focus on gratitude you will feel happier.  I can attest that it works.

For a few weeks maybe more I have been waffling back and forth, thinking I would not be on this good earth come spring and then thinking I have many years left.  Back and forth, back and forth.  In reality we simply have no way of knowing.  I do know this disease took a giant leap forward.  In late May early June, I was participating in the Lance Armstrong Live Strong program at the local YMCA.   I was doing 1.5 hours of controlled exercise without Oxygen.  After my hospitalization in June I am unable to walk 20 ft without Oxygen or I am gasping for air.  In my mind that IS a giant leap.  However, I think now that maybe it has settled down and well stay at this point maybe for years.  I know that it will not go back to prior to June, but I have now (for the most part accepted) where I'm at now.  I still get frustrated with the cords, tubes, new appendage but I am also grateful for it as with it I can continue to have a good quality of life.  Yes, it is a new way of doing things, but I am still able to do things.

I can go shopping, I can visit with friends for lunch, I can bake and do some minor housekeeping.  True I get tired quicker, lots quicker, but none the less am still mobile and I am Grateful.

I have a new Granddaughter, Jillian Elanor and at this point I am planning on watching her start Kindergarten.  She is wonderful and the Boggs Sisters are going to take the world by storm.

Thanksgiving is upon us and I am grateful that I feel able to host dinner for the family.  Yep I will need more help, but feel very able to get it done in our traditional fashion of semi-homemade.  We have all the traditional food & trimmings and I am so looking forward to this week of preparation and having the kids here.  I am looking forward to sharing time with Leah as she helps me this week.  We do plan to have Leah take over the hosting of Thanksgiving next year no matter where I am with this disease.

I am trying to lay in bed each morning for a few minutes and Count my Blessing One by One before I start each day.  I believe this has helped me to feel better.  I also try to do this again each night before my prayers.   Next week I will have to spend some time researching end of life stuff.  Like a directive, palliative care, wills etc.  Everyone should really do this as really we just never know.  One split second can change a whole life.  I want things to be as easy as possible for my loved ones when I leave this world, so this must be done.  After all there really is only one way out of this world and we all have a ticket at some point.  What is the boy scout model - Be Prepared.

I have learned that when you focus on gratitude you quickly learn what is really important and what is not.  Try it for yourself.  Have a wonderful day everyone.  Here is Michigan the sun is shinning bright and I intend on enjoying the warmth of it.  

Thethered

It has been 9 days since I have been tethered!!!  This is a very different way of life.  A person is changed forever when they are diagnosed with Cancer, that is true enough, but let me tell you when it is Pulmonary Fibrosis (or any disease that requires oxygen 24/7) life is really, really changed.  Example, today I was going out to the movies and taking somethings to Leah while I was at it.  I got my shoes and coat on, I got everything gathered in my arms including my purse and started for the door only to realize I was hooked to the home stationary machine, had to unload and start over.  Switched the machine to the backpack, gathered everything again and then remembered I had not turned the machine on.  Thankfully RC was home and turned it on for me.

Other things I noticed being thethered.  The smell, this oxygen has an odd scent, minor headaches (I never got headaches), I think this is due to air going up the sinuses.  A runny nose when I eat.  What's up with that? 

Traps, I am glad I can get to every room in the house with the one hose, but when I least expect it, the hose kinks or catches on something and I am stopped in my tracks.  This happens 30, 40, 50 times a day.  The hose is constantly kinked up.  It was really odd the 1st time I took a shower with it.  It seems the cord is everywhere and sometimes simply wrapped around my legs.  Amazingly neither of us has tripped on it.

Liquid Oxygen is silent so I have left it on all night in the livingroom at level 4 once and about 1/2 the day in the bedroom at level 2 today.  Seems I am always turning it up or down.  It should be at level 2 when I am sleeping or sitting quite and at level 4 when I am moving about.  Half the time I have it reversed except when I start moving around at 2 I am reminded pretty quickly to turn it up as I can't catch my breath.

If this sounds like I am complaining, you are right I am complaining.  This just plain sucks!!!!!!!!!!  I know it will get better as I get more used to it and I also know that it could get a whole lot worse quickly.  This disease progresses at a different rate for everyone, but for this 1st week it has been a challenge and I did not want to gloss this over.  It just plain sucks!!!!!!!!!

I did find a website that has some info on what to expect going forward (http://www.dailystrength.com/) and frankly it scared me a lot.  Is it good that I know more, maybe, maybe not.  What is the saying Ignorance is Bliss, maybe so, maybe not, this quick progression caught us off guard, we had anticipated it would be a slow progression over time and not a jump forward like it has been, but in reading on this site, this disease is in control and I am just along for the ride.  I think I may be in for quite a ride and my family too.

The Bus is coming!!!!

Hello Friends & Family and possible New Friends,
As most of you know I have a disease called Pulmonary Fibrosis.   http://www.pulmonaryfibrosis.org/ipf.   Pulmonary Fibrosis has no known cause, or treatment and is progressive.  I was diagnosed with Pulmonary Fibrosis in February 2009.  I was advised to use Oxygen at night and upon exersion if needed.  I was to set the Oxygen level at 2 liters per minutes.  Life went along basically unchanged.

In December 2009 I was diagnosed with Stage 3B inoperable lung cancer. Life as I new it changed drastically.  I am happy to report that after intensive treatment my lung cancer is in remission.  5 months and 9 days from diagnosis to remission.  Truly a miracle and I am grateful!!!!   However at this point I do not think Lung Cancer is the worst thing to happen to me.  IPF is!!

In June 2010 I got some kind of infection in my lungs and spent a couple of days in the hospital.  My Pulmonary Fibrosis has been on the march since then and is progressing rapidly.  This brings those who did not have the opportunity to follow my caringbridge cancel blog up to date.  http://www.caringbridge.org/visit/aprilboggs.  Fast forward to 10/27/2010 and my appointment with the lung doc and my lung function test.

At my visit yesterday it was determined that I have lost about 30% of my ability to move air since May.  (Now this is about 15% between May and a visit that I had in August and 15% since my August visit.  I had been struggling to breathe for at least a couple of months even just trying to walk across the room with oxygen and I was anxious for this appointment.  The upshot is I am now on 2 liters per minute of oxygen resting and sleeping and 4 liters per minute when I am ambulatory.  I will have a new Oxygen supplier tomorrow and I will be using Liquid Oxygen.  Liquid Oxygen is much more portable and will last longer when I am away from home.  My current I-fill tanks would only last about 1/2 hour at this level.

It is hard to live with a disease that you know is literally killing you, you just don't know when.  A caption from another PF person.  Whats so different, one could go out tomorrow and get hit by a bus.  True enough, but the difference with having PF is that "We have looked over our shoulder and we see the bus coming!"

Now it is true that my Pulmonary Fibrosis is currently progressing.  It is also true that it could just go back into a holding pattern (I vote for this option right now please) and just stay at this level and any given amount of time, or it can progress at a faster level.  All we can do is wait and see.

I decided to start this blog for 2 reasons.  One it does not belong in the cancer blog and two, so many people care and want to know what is going on with me that this is the easiest way to keep everyone informed.  Actually, I guess 3 reasons the third being that there is so little information out there, maybe my experience will help someone else along the way.

I plan to post about once per week or maybe more if I have something to share.  Please feel free to leave comments and thoughts.