TRANSPLANTAMOON.

Waking up today was much calmer and better than waking up the past few days ... that is because I got GOOD, no GREAT news!!!  My PET scan gave every indication to the doctors that the nodule they're following in my lungs is NOT malignant (yay, scream, happy dance!!).  This is by far the best news I've received in a while.

There is a little kicker however ... the doctors want me to have a repeat PET scan in 3 months to re-evaluate this sucker.  If the nodule is the same size, or larger, I will have to get a biopsy done to further rule out malignancy.  If the nodule shrinks (or even better, vacates the premises), no biopsy will be needed.

So...what does this means for going "active" on the transplant list?  Well, I can't go active until the nodule situation is cleared up (i.e., they determine in 100% certainty that it is not cancer).  The doctors are trying to AVOID a biopsy at all costs b/c the procedure is risky, and even more so for me and my already fragile lungs.  So, I am in somewhat of a stall period right now for another three months.

I was (and still am) at a point of being mentally, and physically ready to go active on the transplant list, so in one sense it is a bit disappointing that we can't move forward just yet (never did I ever think I'd say I was disappointed to not be listed) ... but in all honesty, I am just so thankful that the scan was negative, that is the main consideration.

Thank you for all the calls, texts, emails, etc over the past few days.  Waiting for critical results like this can be torturous.  For now, we try to keep me as healthy as possible and enjoy a few more months of "pre-listing" life.  As soon as I go active, I will have some limitations I have to abide by (like no travel more than 3 hrs from Houston, no alcohol, etc), that will extend beyond transplant as well.  In all reality we could be Houston bound for at least 2 years once we go active, so my little brain is wanting to get one last mini-vacation in, if my health allows ... we shall call it the "TRANSPLANTAMOON".  People always go on "honeymoons and babymoons" before getting married and before baby's arrival, so I say we do a "transplantamoon" before I get my miracle of a double lung transplant!!

Cheers and much love. 

Rebs

Hurdle Journey

Another day, another hurdle. Sometimes it feels like that is all I do lately, attempt to handle and jump life's hurdles.  

Last week we met with the transplant team.  I completed all of my lung transplant evaluation testing finally, and we were to meet with the team to determine a plan going forward.  A plan which we had mapped out in our minds going into the appointment.  A path and plan which I was (and still am) ready to travel, but we were met with yet another hurdle in this transplant journey.  The team has been following a nodule in my lungs now for about 9-12 months, since my thyroid cancer diagnosis (and subsequent chest CT scans after surgery).  I had a repeat CT scan last Wednesday, and it again shows the nodule.  Good news is that it has not changed sizes, and due to the chronicity and nature of my lung illness, the doctors feel quite certain it is not cancer, but it is likely scaring or anything but a malignant tumor.  In order to be listed however, they have to know in full certainty that it is not the big C.  I try to find comfort in the doctors reassurance that it is likely nothing, however, I would be lying if I haven't thought about the "what if" scenario.  I was told my thyroid nodule was "likely nothing", and that turned out to be malignant.  

So, on Wednesday of this week, I will have a PET scan to determine the nature of this nodule.  Cancerous tumors/cells require and use a lot of energy compared to healthy cells.  The PET scan will give the doctors a very good indication that this nodule deciding to take up residency in my lungs, IS NOT of the malignant type, and that it too can go, when I get my miracle of new lungs ... at least, that is what I keep telling myself.  I tell myself this, b/c the alternative just can not be an option.  So those of you reading this get a perspective, I'll be frank with what this means.  If it were determined that this nodule is malignant, my chances of being eligible for transplant would be extremely minimal.  One would think that they could just take out the bad lungs (and malignant nodule) with a transplant, but that is not how it works.  Without getting into all the details, I'll just leave it at this ... we HAVE to have a good result on Wednesday's scan, for my eligibility, for my future. 

This too is a hurdle, and hopefully it is one that I can jump over gracefully as I continue around this racetrack, with the end goal of happy, healthy breathing days ahead.  After this scan is completed (and we get favorable results!!), my case will be presented to the medical review board for the final decision and clearance to go active on the transplant list.  If all goes well, I could be listed within the next week or two.  

Please keep myself and my family members in your thoughts this week and in the coming weeks as we (hopefully) make a the transition to going active on the transplant list.  I'm very hopeful and excited to think about a chance at better breathing, but I am also dealing with fear and anxiety as we go through these final tests and wait to hear whether I can be listed.  I know my incredible husband, my amazing parents and brother, and my in-laws are also experiencing some of these emotions, so please reach out to them.  Let them know you are here for them.  I've said this before, and I will say it again ... it's very hard as a patient, but it's also incredible hard on loved ones and they need as much, if not more support as I do. 

Laces are on and I am ready to jump this hurdle. 

Much love.

Rebs