Running the Gauntlet

I realize I am still a touch out of practice from having multi-day testing. It used to be old hat. I’ve had a lot of the same type of testing the past two days before for various research studies over time at places like the National Institutes of Health (NIH) & a few other places.

But I feel 10 times more exhausted after this latest set this week. Guess this is not surprising, but I’m hanging in there.  No troubles sleeping the past few nights because of all the rushing around to different places for my testing & sometimes “hurrying up just to wait”.

I’ve had less blood drawn that I what I thought I might yesterday,  but got poked for an arterial today (lucky I was able to be numbed for it so it hurts less than it would have otherwise). I’ve endured about 4 different imaging tests (CT, barium swallow, chest X-ray, & ventilation/perfusion). I’ve swallowed barium yesterday & radioactive air today so my insides will probably be lit up awhile yet.  I’ve had a six minute walk, & rehab consult along with my pulmonary function test (which I have a love-hate relationship with.  Love for the information it gives me, hate for the effort it takes out of me.)  I then will have a heart catheterization tomorrow.  But at least for the evaluation I’ll be done after that & after I lay still for 4 hours.

At Gift of Life Family House I’ve met some people going through the same process at Temple & their evaluation tests are 3 weeks long. I can’t imagine being down here for testing that long.  I’m sufficiently tired after 4 days (which it will be tomorrow after the cath test).

Overall, my new team I’ve consulted with is great. Most of the staff in the various departments at HUP are efficient & nice. So I can’t complain too much. I then also get to come to a great house to relax, get fed, & sleep in a comfy bed.

It’s an interesting, yet exhausting process, but I’ve met a lot of people in various stages of this journey & various ages.  All with interesting stories to share.  This has helped also break up some of the monotony of the wait time between tests or just to have a nice conversation with someone else about their life & journey over a nice home-cooked meal lovingly prepared by dedicated volunteers.  Even the volunteers have some pretty interesting stories and connections too.

Many of the shuttle drivers that take us to & from our hospital visits each day are transplant recipients which is very encouraging & interesting as well.  There are several different organizations that come in to cook our nightly meal. Their stories are as warm as the meals they cook for us.  The food is excellent & nice variety of fare.

Last night’s HomeCook Heroes were Organ Recovery Systems (OCS).  I had an extended conversation with someone who actually is in procurement & had done actual chopper runs to pick up organs at all kinds of hours & locations for years.  I was in geek heaven listening to stories about his experiences but also being able to share how amazed I was in the advances made in transplant recently that I had heard about.

I have another morning of fasting tomorrow, but at least I get to sleep in through most of it which will help.  I won’t be thinking about bacon & eggs or cheerios for too long & it will be nice to not have to be up at 5:30 am to get ready for the day like I had be the last few days.  After all of these years, I can be a morning person, especially when I have to, but I don’t say I do it well all the time.

My friend has been a trooper too – keeping herself entertained waiting for me to complete these tests, sitting in with my doctors & strategizing & keeping me honest when I try to downplay things.  Of course, I do that as a habit because no one in my position ever really wants to admit how hard things get to deal with some days (even to themselves), but I did have to admit them this week so they would have an accurate picture of where I’m sitting quality-of-life wise. It wasn’t always easy to admit those things, as I like to think positively but objectively I have to admit my quality-of-life is not what it was, and not even what it was a year ago.

At this level, I guess it’s expected & understandable…but when you have that stubborn independent streak it can be hard to let go. Still in some aspects, there is some relief in being brutally honest. Giving that information hopefully will get me more information in return & possibly more help to get a handle on what’s really going on; especially since my mid-July decline.  So I am no longer scared. I am relieved.  I will soon (after Labor Day) have a better picture of what’s happening instead of spending more time in limbo & continuing to struggle but not knowing why. There’s no worse feeling that knowing something is afloat but not having enough information to figure it out.

Good or bad, I can deal with the answer.  I just need the answer so I can move forward.  But in the interim, I’m really glad I listened & went through this process. It can only help me in the end, regardless of the outcome. I’m also lucky too that I have such strong support. Some people aren’t so lucky.

For the women with my disease who are reading this.  Please take this step when your doctor suggests.  I think there’s a big misconception that people feel they have to be ready for everything at the evaluation.  That is not the case. It may not even mean “go” right away.  Just being poked & prodded to get more information as to when it might need to happen.  But learning more about the process, going early finding more information seems to me to be easier because then it can help me strategize without feeling something is imminent. Now for me, it still could very well be imminent.  But it may not. Plus, I did have the initial talk in 2011 with all the facts & figures just to open the door and get information, so this, after the first day jitters passed, seemed more manageable & less overwhelming than if I was just hearing this all for the first time.  Yet, to know either way & then get a timeframe I can work within is much easier than just continuing to struggle to do things & have difficulties intensify with no rhyme or reason, help, or explanation,  & having no idea of what my center doctors make of all this.

Because of all the advances in transplant, the outcomes keep increasing.  Things are a lot more encouraging.  I’ve been watching on the sidelines for 12 years as many of my brave mentors went before. Most of them are still here holding my hand from afar as I now walk down this road even with lower risk & higher survival percentages to fall back on than they did.  No one has ever told me they regretted their decision.  That to me speaks volumes.

It’s serious & intense, yes, but to be too afraid of it when it’s time to put it on the table as an option only does yourself a disservice.

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4 thoughts on “Running the Gauntlet

  1. I have 2 rare diseases too and call myself a “brain tumor champ”. 🙂

    Liked by 1 person

  2. Hi Nicole! I am reading your blog for a class assignment, but I am also a Lammie. I am so impressed with your honesty and your courage. You give me great hope and I just wanted to share with you that your blog has really inspired me!!!! Please keep writing and sharing. XOXOX

    Liked by 1 person

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