December 15, 2015 - All in a day's work

“It’s the best news we could have gotten in the situation.”

 Mom summed it up pretty well. We’ve been waiting about 2 months, and more recently about a week, but it feels like a year! Time rolls by at a snail’s pace when the situation matters to you. You want to go on that trip to Jamaica…well the week leading up to it is like 5 instead. You find out you might have a progressive disease and a week feels like a year! I’m not the only instant gratifier out there. I know it to be true.

As a highlight overview (see previous the five posts for the minute to minute details):

·     For the past year- I’ve had new respiratory symptoms

o   It takes forever for me to clear a cold

o   After climbing only one flight of stairs, I’m gasping for air

o   I can walk 2 miles on a flat surface no problem and do that often, but put me on any set of incline and I get about 20 feet.

o   These symptoms were new, and they seem to be more persistent from day to day.

·        Late in October- my lung function tests showed a restrictive process (Asthma is an obstructive process. I had no obstruction.).

o   Restrictive processes are often a sign of pulmonary fibrosis; and rarely anything else.

o   There are basically 2 kinds of fibrosis – “immunologic” and or idiopathic which carries a very quick timeline with very dismal outcomes often requiring lung transplant; and “radiation induced” that happens years after radiation treatments to the chest. I had significant radiation as a teenager for my lymphoma and which also result in my need for a double mastectomy 3 years ago.

o   It seemed very probable I would have radiation induced with my history, but my grandfather died of fibrosis, and I have a strong immunologic history so we couldn’t rule those out.

·        Early November- I had a cardiac pulmonary test which showed normal cardiac function but showed oxygen desaturations during exercise.

·        A week ago (Monday)- I have my appointment with the most Delightful Fibrosis Guru (DFG) and she confirms I need a fibrosis workup to see what is going on.

·        Monday evening- I have a chest CT and some immunologic lab work.

·        Wednesday- I find out I do in fact have pulmonary fibrosis (mild on CT scan).

·        Thursday-  I find out 2 of my immunologic tests come back positive. 6 or 7 others are negative.

·        Thursday night and into Friday- there is a meeting of the fibrosis minds to review my case to try and rule in or out radiation induced or Immunologic

·        Monday (today)- DFG calls me to update me on ongoing discussions and where they landed

Delightful Fibrosis Guru is quite confident I have the radiation induced version of pulmonary fibrosis. She feels she can say this with confidence based on the following things: 

•  I have had extensive amounts of radiation to my chest
• While my grandfather died of fibrosis, my immunologic markers are all negative except 2, and those 2 can be positive for a plethora of reasons.
• The pattern of my fibrosis on the scan is isolated to regions where I had radiation. Think of an apple. Immunologic and aggressive fibrosis occurs all around the outside portion of the apple just under the skin (the peripheral parts of the lung) and spreads in a short time from there. My fibrosis is in the stem portion of the apple (upper regions of the lung). My fibrosis is mild, and so far, isolated to that region.

We now feel confident we can call this radiation induced fibrosis (huge sigh of relief and cheer from the gallery!). What we don’t yet fully know and understand is:

• Where in the process is my fibrosis. We have no reason thus far to think it is aggressive. It may have even been in play for many years. We will have to continue to do lung function tests over time to see if we can see if it has stabilized. We don’t anticipate significant changes over time long as I don’t ever develop the immunologic kind. I will do another lung function test within the next year (an then annually, or sooner if symptoms progress) If those were to show changes, then we do another CT scan.
• We don’t understand why I am dropping my oxygen saturations during activity. This occurs in fibrosis, but usually only in moderate to severe cases. When fibrosis patients drop their oxygen on a consistent basis (for a majority of their day) to the upper 80s, they are considered lung transplant candidates. I hit 93 (during exercise; 99-100 at rest). This does not happen in “normal” lungs. We should continually maintain 99-100% despite our activity level. Since my CT results do not show moderate or severe fibrosis, why is this occurring? Is there a blood clot? Is there another lung process occurring? We are going to redo this test to see if it occurs consistently, and if it does we will now have to work that up. Our organs need oxygen, so we need to do better than 93%.
• We have to figure out my asthma. Do I have asthma (we think I do) or was that misdiagnosed back in college and instead I had fibrosis then that wasn’t picked up? To be determined.

Put all of this together and it’s the best news I could have gotten given the fact that I now know I have fibrosis. It’s mild thus far, we have no reason to think it will play out as the immunologic form does, and maybe this is the most symptoms I will ever have. How is that not a score and a reason to celebrate (Ron and I plan to do just that)?! And as for the symptoms, she said I shouldn’t discredit the fact that my heart and lungs have taken significant hits from radiation. They will not “act normal” like most people. Little triggers can cause big effects. Case and point, 6 surgeries to the chest in the past 3 years. That is going to take a toll on radiated lungs. And don’t be offended if I now avoid you like the plague if I know you are sick with a respiratory illness. I used to avoid you for work reasons (as I work with Bone Marrow Transplant patients), now I will do that for self-protection reasons as rebounding from a cold can be prolonged with both asthma (or whatever is happening in my lungs) and fibrosis. Maybe this now explains why Ron sails through a cold or the flu at twice my speed of recovery. I will avoid you, don’t take it personally, and I ask you to return the stigma and avoid me as well. = )

Ok, so are you caught up now? We still have some stuff to sort out related to the oxygenation and my pulmonary symptoms, but I know I can “breathe easier” (pun intended) now knowing I am not in a race against the clock! I can’t tell you how heavily that weighs on a mind. My next appointment with Delightful Fibrosis Guru is in mid-February (that was her earliest appointment). We will check the oxygen saturations while running up and down stairs.  Sounds delightful doesn’t it! I told you she was delightful. I think I am going to make her run them with me.

I had gotten to a place of peace. You can see my post of yesterday (Sunday) of how God supernaturally grabbed hold of my mind and heart and gave me calm. While I was prepared for either outcome, where it actually landed with what we know at this time gives me a little happy dance in my chair. And maybe even more so for Ron. He was beaming from ear to ear when he got home to hear the news. (It’s not lost on me how all of this has impacted him). Diseases without cures can certainly stop you in your tracks. You can’t help but long for what might not be. But I’ve also found you can find calm and peace along the way. God is still revealing his plan to me in all of this, but I am grateful for the extra gift we got today all tidied up in a Merry Christmas bow. 

Thank you for your ongoing prayers as we continue to navigate.  I am celebrating in the extra blessing he has provided in giving me more physical hope, and also still aware blessings can come in trials. In the meantime, please don’t stop to make fun of me when you find me in a pulmonary heap at the top of only one flight of stairs. Simply help me up, tell me to hold my head proud, and remind me I don’t have the immunologic version. That will do the trick! All in a day’s work (ok, maybe it was 2 months).


Click  www.tradinginthetatas.blogspot.com to access other posts.