I need to remind myself to slow down a bit…but I always feel better when I’m getting things done.  Today I managed to do quite a bit but still have more on tap for tomorrow (but this was stuff that needs to get done but a little less pressing). At any rate, I was given a health maintenance checklist at my evaluation so that’s why I pushed today.

The purpose of the checklist is mainly making sure most common vaccines & screenings are up-to-date.  I knew it would be tight to get it all done before my follow-up appointment after Labor Day, but I was going to try.  I fell a bit behind of where I wanted to be at this point this week but instead of panicking, I tried to keep my cool.

I filled out as much before the evaluation as I could, but had some questions about priorities & if I needed to have certain things done at all. That left more for me to do after the evaluation rather than squeeze it in before (after I got my schedule & some of these forms).  But in my case, it was a bit harder to discern because I’m still under 40, so some of those screenings & vaccines didn’t apply (but I wanted to verify absolutely which ones I didn’t need & if there were some I still did need outside of the normal age requirement for diagnostic reasons rather than maintenance ones).

I knocked out a good chunk today. I changed primary care doctors (PCP) in the early part of this year, and am so much happier. My good one left so I had to fumble around before I found my current (who I really like). I called his office this morning, told his staff what I needed & I was able to come in today already to get some of the items checked off.

Two shots later and a script for a scan I was almost done.  Another trip to another office (who couldn’t get me in until December) checked something else off for the time being. The last major outstanding item will be taken care of on the 17th.  I’ll have a few scans squeezed in just before Labor Day.  I may not have the results, but I’ll have it done at least.   Then after my flu shot in October, I’ll hopefully be completely set & everything will be completely up-to-date.

I appreciate this help from my PCP because I know it was shorter notice I gave them (more than I even like to give) but they worked with me anyway. That’s the mark of a good doctor (but especially a PCP) – trying to squeeze you in when they know there’s something pressing.  Or one who isn’t afraid to help you organize & coordinate to get things done.  I’ve had some hit-or-miss trials with a few, so believe me, I know & appreciate the difference.

I have most of my support list done & ready to send (which I knew I’d have to get a bit more together than I had roughed out prior to the evaluation. Yet I told them I wanted to flesh it out more  after I found out more information from them). I also sent all my local doctors names & information to my transplant team (as I had all phone numbers & names – but not addresses and faxes – they are now added to my phone in case).

if you are one of the women with my disease(s)  (LAM or TSC) preparing for a transplant evaluation that is reading this; do yourself a favor, now.  Get or make a list of your common immunizations & the dates you received them. If you are over a certain age, include appropriate health screenings (like mammograms). This could potentially save you a lot of work if they ask for it in the end run. Make a list of your local care team and their full information (for example I didn’t list absolutely every doc but the 3 I see & rely on most often: PCP, pulmonary doctor, nephrologist).

In addition, get either the visit notes of the last well visit you had or save that correspondence note from your doctor with the “all clear” in case they need that as proof of it being up-to-date. Get the same clearance from a dentist for your dental exam.

Then the list of remembering what shots, screenings & examinations you had will be quicker & easier to complete. I know all of this can get tiring like keeping medication lists up-to-date too, but the better you organize it, the less of a burden it will be to plug the few gaps you might have & you’ll have save time having to chase it down.

Do the same thing with your support team list (friends & family who have agreed to help you). I have a few main supports, a few alternate supports, a few specific supports for certain things, and then a general list of people who support those people who may call and ask about me, or who may fill-in when asked.

They may have to send consents to these people to have them sign, but at least this will all be on file. Let’s say an aunt or whomever calls to ask how I’m doing, they will be a known entity to my care team & appropriately identified as a support.

Since I’m single, I do have a few primary supports. Since a few of them are far away, I have back-ups here locally as well just in case that can serve as backups to my main support here & those other supports who most likely would be enroute. It also never hurts just in case your main support is unable to drive (accident, injury, etc) to have someone else lined up on standby to be there for you both.

Hopefully it won’t come to that, but one never knows.  One can never be too prepared (but then again, I’m a planner. Always have been.  I also like a deep bench of support to be able to call in too. Then I feel like less of a burden or at least that I have identified other supports for my main supports to hopefully cut down on anyone feeling burnt out or unsupported themselves).