Ok Im gonna hafta get a little better at this.
So its been a pretty quiet month overall. Except for last weekend when my good friend Kevin was called for his lung transplant (he also has CF). He's on the list at Mayo, just as I was. Unfortunately it turned out to be a dry run. So he's still on the list. But he IS number one, so...it could be any day!
Ive been doing great, steadily gaining weight and working out. I have an organ donation/transplant 5k in April. The goal there is to actually run the entire thing. Not worrying about time, just finishing. We'll see how that goes. I don't know if I'm mentally able to not worry about time. Thats just not in my nature, lets be honest. To many 5ks in high school has left me unable to do handle failure well...and running anything over a 30 min 5k (I'm giving myself a long time to run this obviously) is just not gonna work.
One thing I am slightly concerned with tho is a recent change to my meds. They asked me to hold the medication Valcyte which is protecting me from getting CMV (cytomegalovirus) - google that if you want. My white count was low in my latest labs so they told me to hold it to see if they improved. Only problem with that is that it allows the CMV antibodies that were present in my donor lungs to make there way to my lovely immune system, remarkably feee of CMV antibodies. How i never got CMV growing up is beyond me. Over 75% of the population is positive for CMV antibodies, yet somehow in all the sickness i had, never was it CMV. OF COURSE NOT. Soooo Ive been payin attention to how I'm feelin, Spiro numbers and temp and such as so far no real change. But this morning i woke up with a sore throat and i little cough, but nothing productive, more just a tickle. No fever or anything and from what I can tell my lungs sound clear and air is moving easily (yes I have my own stethoscope). For all i know they are just allergies, but I'm getting freaked out. Ive called Mayo and am waiting for a call back. I did follow up labs yesterday but I don't think the results are in yet. They would be able to tell if I am now positive for CMV. This was something we knew was going to happen at some point - anytime you have "mismatch" between the donor and the recipient - but still Im sorta freaked. Soooo until I get a call back Ill be home, laying down and re checking my vitals every hour or so. Lol - can you say paranoid much?
But Id appreciate some good thoughts and prayers that if this issss CMV that it'll get taken care of easily and without any extra issue. Annnnnd that Mayo calls me back like soon. Not exactly how a was hoping to welcome my SEVEN MONTHS post tx, but hey whatcha gonna do. I just hope I don't hafta go to the hospital or anything cause I have a hair appointment tomorrow and seriously things are startin to look a little unfortunate up there...
Hope everyone has a great weekend :)
Much love...
Erin
So its been a pretty quiet month overall. Except for last weekend when my good friend Kevin was called for his lung transplant (he also has CF). He's on the list at Mayo, just as I was. Unfortunately it turned out to be a dry run. So he's still on the list. But he IS number one, so...it could be any day!
Ive been doing great, steadily gaining weight and working out. I have an organ donation/transplant 5k in April. The goal there is to actually run the entire thing. Not worrying about time, just finishing. We'll see how that goes. I don't know if I'm mentally able to not worry about time. Thats just not in my nature, lets be honest. To many 5ks in high school has left me unable to do handle failure well...and running anything over a 30 min 5k (I'm giving myself a long time to run this obviously) is just not gonna work.
One thing I am slightly concerned with tho is a recent change to my meds. They asked me to hold the medication Valcyte which is protecting me from getting CMV (cytomegalovirus) - google that if you want. My white count was low in my latest labs so they told me to hold it to see if they improved. Only problem with that is that it allows the CMV antibodies that were present in my donor lungs to make there way to my lovely immune system, remarkably feee of CMV antibodies. How i never got CMV growing up is beyond me. Over 75% of the population is positive for CMV antibodies, yet somehow in all the sickness i had, never was it CMV. OF COURSE NOT. Soooo Ive been payin attention to how I'm feelin, Spiro numbers and temp and such as so far no real change. But this morning i woke up with a sore throat and i little cough, but nothing productive, more just a tickle. No fever or anything and from what I can tell my lungs sound clear and air is moving easily (yes I have my own stethoscope). For all i know they are just allergies, but I'm getting freaked out. Ive called Mayo and am waiting for a call back. I did follow up labs yesterday but I don't think the results are in yet. They would be able to tell if I am now positive for CMV. This was something we knew was going to happen at some point - anytime you have "mismatch" between the donor and the recipient - but still Im sorta freaked. Soooo until I get a call back Ill be home, laying down and re checking my vitals every hour or so. Lol - can you say paranoid much?
But Id appreciate some good thoughts and prayers that if this issss CMV that it'll get taken care of easily and without any extra issue. Annnnnd that Mayo calls me back like soon. Not exactly how a was hoping to welcome my SEVEN MONTHS post tx, but hey whatcha gonna do. I just hope I don't hafta go to the hospital or anything cause I have a hair appointment tomorrow and seriously things are startin to look a little unfortunate up there...
Hope everyone has a great weekend :)
Much love...
Erin
Erin, I've got you in my "Hope you check out just great and you end your day tomorrow with a simply gorgeous head of hair prayers"!! May God bless you with wonderful lab results. Much love my dear.
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