Children, Rare Disease, & Transplant

My diseases robbed me of the ability to have children.  There was a 50/50 chance of passing along Tuberous Sclerosis Complex (TSC) to a child if I had chosen to have one at any point.   Later, I had a complication that would completely close the door on that possibility, ever.

I have no regrets in this regard, but sometimes being a single woman with one disease (lymphangioleiomyomatosis or LAM) that consists primarily of women who may already have had children or were having children when they were diagnosed is tough because it’s an experience I can’t relate to in the same way.

I can understand my parent’s fears of having a child with serious illness, but it’s not the same as if I was a parent myself.  I do my best with it, but it’s a challenge.  Especially when the hot button issue of having children comes up in my support communities.

Then having a disease (TSC) that as an adult was still until very recently was often seen as primarily a pediatric disease in the medical community presents its own challenges.

Even though everyone knows if I was born with a defect in my genes, it’s not something that I ever will “grow out of.”

Many times I was asked by medical professional office staff if I was calling in regards to my children when asking about TSC clinic services, when I actually needed them for myself. Then came an awkward pause & a hem & haw over whether they treated adults or not.  (Glad to have finally seen that change.)

Yet, I have some “adopted” nieces & nephews through some close friends so I still get my chances to be around children.   I also have several young cousins who I love watching grow up & experience the world.

I come from a family that although I was an only child had a pretty close family on my dad’s side. We all grew up together & keep in fairly close contact.  They’ve all been extremely supportive through all my health junk, even though it’s caused me to miss some important family events & milestones at points.

I admitted to my mom (ahead of of my visit) my trepidation of coming home this past summer because I was scared if I needed to wear my oxygen at any point I might frighten my younger cousins.

I also had some hesitation about anyone really seeing that dramatic a change in me, yet I knew they would be supportive.

The worry was unfounded but I’m glad I owned that I was feeling that way because then when & if the subject came up it was easier to talk about openly.

I admit too, I had some hesitance of my classmates reactions. It was our 20th reunion that weekend. I went to a small school. I graduated with a class of 36 kids.  Most of whom have been supportive in tough times,  4 of those graduates were relatives.  I also had friends in other classes ahead & below me that I knew well that were looking forward to seeing me.

It turned out ok.  I didn’t need my oxygen at all during the class reunion although I had it on me, but I did have to put it on halfway through my family reunion the next day because I started noticing my levels dipping a little.

The local street dance (the night of the 4th) I also had to wear it because I was doing a lot of walking around & changing position.  Since April this was always the thing that would cause me to get low oxygen levels.

Most people saw I did crack jokes about it & didn’t seem uncomfortable wearing it so they went with it.  I had a few close friends who though it may have been hard for me at first made sure I wasn’t alone or feeling awkward about walking around.

Even though my town is small, & sometimes there’s always that “neighborhood network” rumor mill that small town America is sometimes noted for, they’re always usually pretty great & supportive when someone faces a challenge like this.

Last November, they helped my parents throw a benefit to help me reach my goal to build my transplant fund.  That is something I truly appreciate about my hometown, they’ll always show up in force to help a neighbor.

As I left for Pennsylvania, I was extremely glad I went back if only for a weekend, because I wasn’t sure when I’d be up to traveling again or be cleared to.

By then I had been told I needed tests for a lung transplant (but not much else) so I couldn’t answer many questions.

I luckily had no issues flying with oxygen either or get any grief from the TSA like I know sometimes happens with people.  In fact, the TSA Agents I dealt with made sure I was always in the shortest line, with the least invasive pat downs & quickest scanning of my items.

The flight attendants weren’t hovering but they were attentive & would check-in every so often during the flights to make sure I was doing ok. They also allowed me to pre-board ahead of most people.  I know it doesn’t always work this way, but that took so much stress out of the trip not having those worries about having one of those nightmarish stories one sometimes hears about.

I came across this book a week or so ago called Operation Breathe Easy.   I know it’s primarily geared towards young children that need a transplant themselves, but I also think it’s good for young children who have a relative going through the process to read or center a family discussion around.  It explains things in a very age appropriate & non-threatening way.

I’d recommend it to any family who has questions or is unsure of how to explain this process to their children.

It choked me up a little as I read it.  In a way, I’ve always managed to deal with my diseases better because while I knew about at least one of them from a young age.  I was dealing with the majority of serious medical problems in adulthood where I could understand what was happening to me.

Not as a young child who not only couldn’t understand a lot of medical terms or much of the human body’s inner workings just yet, but also how it was going to impact things meaningful to them as a child or their childhood experience as a whole.   It’s just something I’ve always been mindful of.

Through my volunteer work I know several brave teens & kiddos who have taught me valuable lessons about resiliency & perseverance in spite of huge medical challenges.

I know these same brave children exist in transplant world too.  I do know a few.

I’m glad they have a few resources to take the sting & fear out of going through such an intense experience at an early age.



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