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
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
No comments:
Post a Comment