Turns out blood transfusions are bad, ok

So. Here we are.

I am well into my SECOND year post transplant and things remain pretty fantastic. Lung function remains muy bueno and on xray these bad boys are kickin ass and takin names. Can't really complain about much except one thing - being a woman BLOWS. Really, guys you have it WAY to easy.

Had a few issues this summer with "female issues" (yeah - it is what you are thinkin. I know, I'm sorry, but remember - this blog is about the good, the bad, the ugly - and the REALLY ugly of the shit storm that seems to continue to be my health lol). In about a month's time I needed around SEVEN (yeah 7) pints of blood transfused. I lost THAT MUCH BLOOD. How stupid. And dangerous, especially for someone post transplant. Why, you ask?

Good question.

When you have a transplant you're put on immunosuppressant's the keep your immune system from trying to reject your new organs. Your body sees the organ as a "foreign body" and sends those bitchy white cells to your shiny new organ, thinking its a virus, or bacteria or alien pod baby. It tries to rid itself of the invader, which is what throws you into rejection.

Not good.

So yay for immune suppressant meds that keep me unable to fight any sort of infection on my own but keeps these lovely lungs happy in their new home! Take that white blood cells.

So - blood transfusions dangerous for post tx patients you say? Oh yes. Quite.

When you introduce anything that is not YOURS into your body your body doesn't appreciate the invasion. Like with organs, the potential for your body to see all this new blood as an intruder is quite high. So if I'm not careful, not only can I potentially contract something from this donated blood, but it could also send my immune system into overdrive trying to cleanse my body of the foreign substance. Also, super angry white blood cells from the DONATED blood can actually see ME as a foreign body (crazy right?) and start attacking ME!

The result? A little thing called TA-GvHD or TRANSFUSION ASSOCIATED GRAFT VERSE HOST DISEASE

What a mouthful. A deadly mouthful.

TA-GvHD is a rare but very serious condition caused by those angry white cells in the donated blood getting all crazy and attacking ME. Its a huge concern for those of us who are immune suppressed. Turns out that if you actually get TA-GvHD  you're likely not to be hangin around that long - the mortality rate of those who get it is around 90%.

YIKES.

So needless to say that a blood transfusion isn't the FIRST thing I want to have at any time. Symptoms of TA-GvHD usually take about 10-14 days to appear and as I am about 3 weeks past my most recent infusion, I think I am in the clear. Hasn't been the most settling three weeks I can assure you.

Luckily one thing that can help with counteracting the possibility of this happening when I need a blood transfusion - for whatever reason that may be - is by using IRRADIATED blood products. Its blood products that have undergone gamma-irradiation which helps prevent the donor lymphocytes (white blood cells) from proliferating against the host (ME) tissue. So that's something I must be very vigilant about going forward. Won't make it impossible to get TA-GvHD, but it can reduce the chances.

I swear. Some days I think I need to have all of my medical "ALERTS" just tattooed on my body. How I am ever gonna remember it all. And what happens if I CANT tell people the deal? Geez...stressful. Lookin like a medic-alert tshirt is in order for me lol...bracelets aren't gonna cut it.

At any rate, seems I dodged another bullet on that one. Took four days in the hospital though. Course that was after three days in for the first 2 bags a few weeks prior. When I went in the second time my hemoglobin level was a pathetic 4.8. Apparently a 10 is considered LOOOOW. So needless to say the nurses were shocked I was even conscious, much less coherent (which I was, but just barely). Somehow I had been able to talk myself OUT of driving myself to the hospital that day and waited for Chris to drive me after he got home from work (I can only imagine how that drive would have turned out).

Anyway - somehow these kinds of things (people being shocked by something about me medically - good or bad) usually doesn't phase me. I'm pretty used to it after the years. So when one nurse made the comment "I've never seen someone have such a low hemoglobin level and be awake and talking," I didn't really say much. But when she said "I've only ever seen it close to that one time and he was at two-something," I responded "Oh yeah, what happened?"

The words "He died." as her response didn't exactly make me feel great though.

Bless it.

So four days and 5 bags of blood later I was up to 8-point-something. So they let me go home. Still beneath the "Low" status but I mean geez. They had basically replaced almost all of my blood at that point.

And it only went that high AFTER an ABLATION - ugh I know. Sucks to be me sometimes.

(For those unfamiliar with what an ablation is, I'm going to trust that you can Google-Magic that later so I don't hafta get too graphic)

Of course this was after 4 bags had done little but knock my hemoglobin levels up about a point. At that point they decided they'd hafta stop the bleeding before any of this blood madness would actually make a difference...we were just kind of treadin water there for a while.

So now that that is all behind me and I'm feeling better I get to make an appointment for a partial hysterectomy. GREAT NEWS. Apparently, ablations may/may not last forever, and I can't keep risking the blood transfusion situation. I can't be on any type of birth control either which would likely help with the poly-cystic ovarian syndrome, the uterine polyps and the excessive bleeding but they have a tendency to produce blood clots in the lungs which would kinda be bad. And IUDs are out because of the POTENTIAL for infection.

Which leaves me with a partial hysterectomy at the ripe ol age of 29. Loverly.

But hey, whatever it takes to keep these lovely air-bags happy -- I'm in :)

So that's about it on the health front for now. Thanks again to all who follow along with me, even as these posts have gotten less and less frequent. Not something I am complaining about though.

You'll prolly hear more soon regarding the hysterectomy thing. Promise I'll attempt to keep that one from being to wretched.

Take care folks :)

BIG LOVE...E

First minor setback...if you can really call it that

So yesterday was sort of an annoying day.

Most of you know that I had some tests and things done Monday. Blood work, chest xray, bronchoscopy and my first pulmonary function test post transplant. During that visit I got great feedback on my initial results: bronchoscopy looked clear and lungs were looking "better than they should be" at this point, O2 stats were 99% on room air, blood pressure was spot on and chest xrays looked "great." And while I felt that a 54% FEV1 score was LOW (well it was high compared to my 22% pre-transplant), they assured me that it was right where it needed to be for this stage in my recovery and that it will only be going up. I had them assure me of this about 10 times before I left the room, but they were all very positive and excited that my levels where were they were less than 2 full weeks post transplant.

All I heard =  that there was room to improve.

Honestly I can't imagine it feeling any better though. At only 54% FEV1 I feel like I'm at 100%. I think any more lung capacity and my entire body will just explode!


So Tuesday was supposed to be a slow day. Just a routine visit to go over my blood work and biopsy results from the bronch. And well I guess it was exactly that. Just not the results I was exactly hoping for.

Before I go on, you people hafta understand something about me:

I am completely mental. Its true...and for all of you thinkin I'm so strong and such an inspiration - well, lets just say I'll be prayin for you.

I am your typical overly competitive, ridiculous high expectations type who suffers the likings of a complete mental breakdown if things aren't progressing exactly the way I think they should or want them to. Some might call it stubborn, some call it determined...I call it mental.

I call it mental cause I allow it to utterly consume me sometimes. I am a complete control freak and knowing that you can do exactly what you are asked to do, maybe even more than asked to do, and this whole thing still might just go to crap overnight, causes me a level of anxiety few ever achieve in
life.

How I tricked that pysch guy into passin me for this surgery was a sure act of God. Now, I'm not one to question the will of God too much...I've seen too many times how things so inexplicable have turned into something so beautiful. Too many times. Now, just cause I don't question it, doesn't mean I understand it.

Now being a complete basket case when it comes to controlling my life and being someone who doesn't question the will of God has not, is not, and will never be an easy thing to do. I am in a constant battle of wills with these to aspects of my personality. If you've ever seen me in action you'd recognize a very distinguishable "Dr Jeykll/Mr Hyde" scenario happening. However, I am currently trying to master the controlling part of my personality and let God take this whole thing over completely. I've seen how He works and how I work. And as much as it pains me to admit...I suck. And after all I've been through, I can't afford to suck.

That all being said, back to yesterday.

One good thing (as uncomfortable as it was) that I wasn't anticipating to happen for another week happened. They went ahead and removed half the staples from my incisions and the sutures in my sides from the chest tubes. Not a very pleasant experience to say the least, but not the worst since all this started two weeks ago. And while today has been uncomfortable in those areas, I'm hoping that tomorrow I will be feelin the relief that comes with havin some of those out. So one good thing. But then there's always the bad thing right? (Well maybe not always, but generally enough that I feel comfortable following the "expect the worst, hope for the best" mentality when it regards my attitude) At the appointment with my transplant pulmonologist and coordinator, they informed me that based on the lung biopsy results from the bronch the day before, while we weren't culturing any infection (GREAT NEWS), they did show some signs of mild rejection.

They were quick to assure me that MOST transplant patients experience mild rejection within the first 30 days of transplant as your body is trying to reconcile what exactly is going on with this foreign THING they've just put inside you. Thus the reason for the super high doses of immunosuppressant/antirejection drugs they're pumping through me daily, and the reason they require patients to remain close to Mayo after transplant for atleast 3 months. They are able to constantly monitor my status and adjust my medications as immediately as possible to ward of infection and rejection that can be deadly. They assured me that mild rejection was something they don't even like to tell their patients about because in honesty, your body has been trying to reject those organs since they went in, and will always be trying to. They weren't made for my body. They're basically on loan. My job (and my doctor's job) is to make their stay as pleasant as possible so they'll want to stay as long as possible.

Well knowing all this is great in all, but remember what I said about being mental. Yup, knowing all that means little when you're me.

I, of course, fight it as much as I can, but its not long before I am up, pacing through my exam room muttering things to myself like, "ok lungs, don't screw me on this," while my pulmonologists decides what adjustments need to be made with my meds. Basically doubling my Cellcept and bumping my Prednisone up 10mg a day. Great. Cause my brain wasn't mush enough already. Bring on more Prednisone! He also prescribed a one time bolus dose of Solumedrol that I did by IV yesterday at Mayo.

So hopefully that will bring these bad boys back to happy, and quickly. One of the lucky things about catching this stuff early and making the necessary changes so quickly means I haven't felt any different. Again, keeping these lungs happy is my only goal until they decide they like where they are and will quit tryin to bug out on me on their own. I realize they could have gone into a more hospitible environment than I can generally provide, but I hope they just give me the chance to try!

Remember, lungs, I didn't pick you for me. God, did. Go with that.

So that's that for now. No appts today or tomorrow, but back to Mayo Friday for another chest xray. Today will, hopefully, be that slow day I was hopin for yesterday. May run a few errands with mom and Chris, but mostly just layin back and restin today. Like I said, I'm pretty uncomfortable today, so lots of activity prolly isn't happening. My cousin Joel and his roommate Mike are comin over tonight for dinner, so that'll give Chris an opportunity to grill, which he never passes up, and allow us to feed two poor college boys who's kitchen cabinets would put a homeless man to shame. I'll never understand Ramen Noodles...and one's willingness to buy them in bulk. Ugh.

So I'll do now what I do best - beg for your prayers! I've seen the power of prayer you people can generate, so I'll shamefully ask it of you again. Rejection and infection. I'd like none of either please. Thank you all again for your constant support...I'll never stop saying thank you for that.

Much love...



Erin