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).
Good luck with everything. My best wishes are with you 🙂
Do you mind sharing if you were on any kind of drugs(sirolimus) over the period of these 12 years?
Yes I am on sirolimus and it did help but I was already below 50 percent when they started me on it – I had much less decline but still enough that the evaluation was recommended after my check up in May when I dipped to 33 before that I was at 35 or above between 2009 and 2014 which I did not need oxygen or notice a change until last winter. I guess at the point I am now my body just can’t cope as well.
Thank you for sharing. How long have you been on Sirolimus now ? Also by 50 , did you mean fev1 ? Or something else ?
Sorry to hear about the oxygen need ,hopefully you get a transplant and back to normal life soon.
Fev1. And the 02 was not a surprise. Know many women with higher numbers who need it. Sure does help. I’ve been on sirolimus since 2009. Always happy that it came along as I have tuberous sclerosis as well & it has kept my kidney tumor growth in check, so it’s just now battling LAM versus having to fight both. It’s possible though if they list me, I may have to come off the drug but I guess I’ll find that out later based on what they tell me.
Thank you for sharing. Since you have fought these diseases for 12 years now, are there any nutrition recommendation that you would like to provide to one like you. Wish you good luck with everything. My prayers are with you.
I think that’s a good question but very personal & for me it’s a continual adjustment. I try to keep my weight within normal range, as I find the closer I am to 150 or slightly under I find it easier to breathe, but that’s just my threshold. Also, I have avoided unprocessed soy and soy-based foods as they have phytoestrogens. It’s controversial whether they make a difference or not, but my personal stance is if LAM is even slightly hormonal based, then I want to limit estrogens whether that’s contraceptive sources or plant based. I also try to eat smaller meals more frequently because I tend to get more short of breath with heavy meals. I do take some vitamins & supplements but nothing crazy (just C, B12, Calcium, Magnesium, D3 & a multivitamin) & just clear them with my doctors to be sure it wouldn’t work against the immunosuppressant or boost my immunity too much because to do so might make the drug less effective. I try to exercise at least 2-3 days a week minimum, more if I can for at least 20 minutes at a time, even when it has become harder because the activity is important. I stay up-to-date on my recommended vaccines & I also have a prophylactic antibiotic I take to try & ward off bronchitis, which was a huge issue for me even before Rapamune was started. Not all of these suggestions work for everyone & not all of them are nutritionally based, but these strategies seem to work well in my case & my situation. I just think having periodic dialogues with doctors & even nutritionists can be helpful & important in formulating your own strategies that will work for you.
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Thank you very much Nicole for sharing all your experience. I wish you good luck with everything and I will look forward to your future posts. Again , my prayers are with you.
You’re most certainly welcome thanks for asking such intelligent and important questions as well 🙂 it’s always good to have dialogue with others to get a sense of what they are thinking about or are curious to know 🙂
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