Well it's been awhile, yet again, since I've visited my blog-but for good reason. There's no news! Things have been very stable (knock on wood)!!! I haven't needed any medicine changes (minus stopping one). I also had the pleasure of going on vacation to GA with my in-laws.
GA was such a spiritual experience for me. Before transplant, getting dirty meant doing something which would require extra breathing. Hiking wasn't even an option. But in GA, I did it. I climbed 2/3 of Blood Mountain on the Appalchian Trail. Our cabin backed right up to it. I never realized quite how powerful and miraculous G-d was/is, until I saw His work on nature. I knew He was great and all, trust me-but something about seeing His creation of Earth was so beautiful. I become more aware of life then ever before on this trip. My life definately means more afterwards.
We also fulfilled a childhood dream of mine-going to Babyland General Hospital! I was in awe!! I love Cabbage Patch dolls so much, and they were so much a part of my identity as a child. We also went panning for gold and gems, saw waterfalls, played putt putt, and made smores. It was a great trip!!!
Things in life are going pretty right, I'm so thankful for that. I never thought being 'normal' would feel so good...but it does. I continue doing volunteer work and plan on expanding my horizons with that in the near future. I'll spill the beans on that one later! Until next time, my friend, may good health and fortune find you peacefully!!!
Wednesday, November 16, 2011
Wednesday, September 21, 2011
You Freak
Well, as promised in the last blog, I haven't updated because nothing too thrilling has happened. I just had my 15 month appointment, and I was called a freak =) And I liked it! Doctor R saw me, looked at all my stats and said I was a "freak, who keeps getting better each and every time". I like that. Afterall, it means there may be even more good things to come. I have been feeling better lately-even though I'm spread thin with time.
I seem to be volunteering everywhere with everything. I love it though, and sometimes I think that's the reason God left me here to finish "my work". Henry has started (and almost completed) his Therapy Dog training. It's been a rough road with him however, as he is still slightly skiddish of strangers. But in last night's class he made tremendous progress with letting strangers pet him-he even was wagging his tail!! He has one more class and one more visit, and if he passes, he'll be our second therapy dog! And in January we'll get Liberty trained =) Very proud of the hard work Jon and I have done with the 3. I also have been volunteering with a "Pet Parade/party" that will be coming in October. There's a golf tournament at the end of this month (in memorium of a friend Alison, who lost her battle with CF 6 years ago). And then Hadassah is still in my life. I even got some time to help a family friend who is a lawyer, so I'm really expanding my horizons.
Jon is still working a lot, but has been able to back off since they hired some help for him.So I see my hubby more now =) (ironic, he's working late tonight!)
And more good news, a friend 'A', just got new lungs last night, and is ALREADY off the vent! I mean, talk about a tough cookie! I hope he's enjoying each breath right now. I pray for the donor's family, and thank them-they gave a young boy his father back =)
As I talk about A, it brings me to mention some things that had been bothering me. I have some friends who have VERY similar situations to mine (health wise), who seem to not care enough to watch what they do. Why drink? One drink-every now and then, I understand (sort of.) But every "event" and multiple drinks, just makes no sense. I had ONE drink-and I felt SO VERY guilty, the next day I beat myself up for it. I worry they don't realize the damage their doing to their body. Not only are the meds not going to be as effective, but what about their organs?! Seriously, someone didn't die to have you destroy the gift they gave you. I'm not perfect by any means, but when I don't do something "required" its generally because there is a true situation prohibiting me. I get so frustrated, and truly, its none of my business what others decide to do to their body, but grow up. Alcohol does not make a party, you do...life does. The people/person I'm referring to will know I'm referring to them I'm sure, because they'll feel some guilt. I just think about my donor's sacrafice and it makes leaving the drink a-okay.
Ok, off my soap box and into bed. It's early but I have so many hours of sleep to catch up on I don't feel bad =) Good night and be grateful...
I seem to be volunteering everywhere with everything. I love it though, and sometimes I think that's the reason God left me here to finish "my work". Henry has started (and almost completed) his Therapy Dog training. It's been a rough road with him however, as he is still slightly skiddish of strangers. But in last night's class he made tremendous progress with letting strangers pet him-he even was wagging his tail!! He has one more class and one more visit, and if he passes, he'll be our second therapy dog! And in January we'll get Liberty trained =) Very proud of the hard work Jon and I have done with the 3. I also have been volunteering with a "Pet Parade/party" that will be coming in October. There's a golf tournament at the end of this month (in memorium of a friend Alison, who lost her battle with CF 6 years ago). And then Hadassah is still in my life. I even got some time to help a family friend who is a lawyer, so I'm really expanding my horizons.
Jon is still working a lot, but has been able to back off since they hired some help for him.So I see my hubby more now =) (ironic, he's working late tonight!)
And more good news, a friend 'A', just got new lungs last night, and is ALREADY off the vent! I mean, talk about a tough cookie! I hope he's enjoying each breath right now. I pray for the donor's family, and thank them-they gave a young boy his father back =)
As I talk about A, it brings me to mention some things that had been bothering me. I have some friends who have VERY similar situations to mine (health wise), who seem to not care enough to watch what they do. Why drink? One drink-every now and then, I understand (sort of.) But every "event" and multiple drinks, just makes no sense. I had ONE drink-and I felt SO VERY guilty, the next day I beat myself up for it. I worry they don't realize the damage their doing to their body. Not only are the meds not going to be as effective, but what about their organs?! Seriously, someone didn't die to have you destroy the gift they gave you. I'm not perfect by any means, but when I don't do something "required" its generally because there is a true situation prohibiting me. I get so frustrated, and truly, its none of my business what others decide to do to their body, but grow up. Alcohol does not make a party, you do...life does. The people/person I'm referring to will know I'm referring to them I'm sure, because they'll feel some guilt. I just think about my donor's sacrafice and it makes leaving the drink a-okay.
Ok, off my soap box and into bed. It's early but I have so many hours of sleep to catch up on I don't feel bad =) Good night and be grateful...
Tuesday, August 9, 2011
Oh bla de oh bla da...
So I'm starting to get on the upswing again. Health is pretty good-minus I'm tired 24/7...truly exhausted. But I fight it of course. I need to stay active (after all, a body in motion stays in motion). I've been battling the buldge lately too. It stinks, but apparently gaining weight is an accessory earned after transplant. I'm the largest I've ever been, and I swear the largest I'll ever get too! But I'm sort of working on it. Not tremendously, because I get discourged and give up..but there is some trying in there.
Jon and I are doing great-lately we've been super close...don't know if its because he is wokring such long hours or because our anniversary is coming up or what. But I've never been happier to have him by my side. We don't spend a lot of time together, so when we do-its valued.
The kids (i.e-3 dogs) are doing good too. Henry is going to try and start Therapy Dog classes in Septemeber. We are all hoping he works out, he is so much my shadow I worry he won't share himself with anyone else. LOL
Good news though! My BFF growing up is expecting a baby girl in December! With all those who've gotten pregnant that I know, this one makes my age feel so....real. I'm in that group where now we all have young families. My dogs make me happy for now, and one day, maybe soon-I'll be blessed with having a child to adopt. Again, if not-I love my pooches. I just hope nothing but the best of luck to A and her baby~so very happy.
Well I have a doc appointment in September, so if nothing to thrilling happens until then, I probably won't write. If I vented/shared everything I'd have my audience snoozing. Enjoy your life and breathe!
Jon and I are doing great-lately we've been super close...don't know if its because he is wokring such long hours or because our anniversary is coming up or what. But I've never been happier to have him by my side. We don't spend a lot of time together, so when we do-its valued.
The kids (i.e-3 dogs) are doing good too. Henry is going to try and start Therapy Dog classes in Septemeber. We are all hoping he works out, he is so much my shadow I worry he won't share himself with anyone else. LOL
Good news though! My BFF growing up is expecting a baby girl in December! With all those who've gotten pregnant that I know, this one makes my age feel so....real. I'm in that group where now we all have young families. My dogs make me happy for now, and one day, maybe soon-I'll be blessed with having a child to adopt. Again, if not-I love my pooches. I just hope nothing but the best of luck to A and her baby~so very happy.
Well I have a doc appointment in September, so if nothing to thrilling happens until then, I probably won't write. If I vented/shared everything I'd have my audience snoozing. Enjoy your life and breathe!
Saturday, June 25, 2011
One year and counting
Well well...guess I made it to one year and six days =) Purty darn exciting if I do say so myself. Of course I know I should keep up with this blog more, since Prograf robs me of my memory, but I don't and so I'll update you with the most recent events of my 'interesting' life.
About 10 weeks ago, we found out a great and very close couple was pregnant. Jon and I were elated-their amazing people and couldn't deserve it more. Then, Tuesday we lost a fellow family friend at a young age, 19. He passed doing what he loved, but that doesn't ease the pain. We went to his funeral this past Saturday-and saw how amazingly loved he was by everyone he's ever met. Then Monday, I began my journey for my 'annual' testing. Boy, oh, boy! It was basically my evaluation all over again-just this time I'm able to leave the O2 at home =) It was a lot easier. We had 3 days of testing..and the first day I needed to get 2L of saline since my kidney function was crapo (2.9, when 1.0 is normal). I was completely prepared to bloat up after that, but I didn't-which means I must've been severly dehydrated. Drinking 3L of fluid a day still isn't enough, and its incredibly hard to drink more than that too. So I found out about the kids, then on Wednesday I got the news from my gastric emptying study that my gastroparesis is still there..My bowels don't move like they should..So again, I was basically told I'm full of sh*t. LOL...really? I think I knew this...So I'm starting Reglan. I was able to come down on my Valcyte (partly the reason my kidneys are bad and I'm backed up) and I came down on Prograf too. CMV was there on my 3rd run of labs, but not the 1st two. This time reading a low 750 instead of 25000..so that was good (even though I thought the little booger was gone!).
So through all this testing, I learn my parents are ready to put Mojo to sleep. My lifelong dog of 16 years. He's in horrible shape, but so happy when he hears the voice or smells someone he loves. That's what makes it really hard. I had to have my Dad reassure me he wouldn't do it until we got back from Tampa and I was able to say one more goodbye. The idea is more than hard to bare, especially since he's far away and I can't be there to comfort him. I love that dog-truly an amazing character.He's one family member who loves ya even when your puking =)(really can't talk about Moe without crying too much so I'm skipping the subject)
When I returned from Tampa I was beat. I fell asleep sitting up several times, passed out on the gastric emptying table, and slept whenever there was a dull mintue. So yesterday was my first time with my husband and we got to see our good friends in Ocala. Unfortunately though, we found out they lost the baby.The news hit me hard. Yes, I know this baby wasn't mine, nor am I a blood relative-but I was truly happy for them, and it gave me a good feeling about life.
I couldn't help but be mad. G-d seemed to be making stupid decisions lately. He took C way too early, and he took this baby too early. And damnit if he hadn't made Moe ill and uncomfortable. Why is picking these INNOCENT people to take, meanwhile I'm here. I should have been dead for about 6 months now. Why am I being left here? I wish He could just drop some sign on me and say "Ashley, this is what you are here for, now get to it".
In the mist of all this survivor's guilt, I thought about my donor's family. How would they feel if their daughter's reciepent was bitching about being 'left behind'. It'd piss them off. I respect my donor too much to give in because I'm not open enough to hear what G-d is saying to me. So my next journey is to find out why. Why He chose to give me 2 lives, and some people one, and some none. Something great is destined to come of all this-so I need to get to work. Sorry for rambling, but the guilt has been piling up for about 2 weeks now and I felt it was time to show that post-transplant is not all 'unicorns and glitter', but we do feel 'down' every now and again-and I'm learning that that's okay, as long as I get back up.
About 10 weeks ago, we found out a great and very close couple was pregnant. Jon and I were elated-their amazing people and couldn't deserve it more. Then, Tuesday we lost a fellow family friend at a young age, 19. He passed doing what he loved, but that doesn't ease the pain. We went to his funeral this past Saturday-and saw how amazingly loved he was by everyone he's ever met. Then Monday, I began my journey for my 'annual' testing. Boy, oh, boy! It was basically my evaluation all over again-just this time I'm able to leave the O2 at home =) It was a lot easier. We had 3 days of testing..and the first day I needed to get 2L of saline since my kidney function was crapo (2.9, when 1.0 is normal). I was completely prepared to bloat up after that, but I didn't-which means I must've been severly dehydrated. Drinking 3L of fluid a day still isn't enough, and its incredibly hard to drink more than that too. So I found out about the kids, then on Wednesday I got the news from my gastric emptying study that my gastroparesis is still there..My bowels don't move like they should..So again, I was basically told I'm full of sh*t. LOL...really? I think I knew this...So I'm starting Reglan. I was able to come down on my Valcyte (partly the reason my kidneys are bad and I'm backed up) and I came down on Prograf too. CMV was there on my 3rd run of labs, but not the 1st two. This time reading a low 750 instead of 25000..so that was good (even though I thought the little booger was gone!).
So through all this testing, I learn my parents are ready to put Mojo to sleep. My lifelong dog of 16 years. He's in horrible shape, but so happy when he hears the voice or smells someone he loves. That's what makes it really hard. I had to have my Dad reassure me he wouldn't do it until we got back from Tampa and I was able to say one more goodbye. The idea is more than hard to bare, especially since he's far away and I can't be there to comfort him. I love that dog-truly an amazing character.He's one family member who loves ya even when your puking =)(really can't talk about Moe without crying too much so I'm skipping the subject)
When I returned from Tampa I was beat. I fell asleep sitting up several times, passed out on the gastric emptying table, and slept whenever there was a dull mintue. So yesterday was my first time with my husband and we got to see our good friends in Ocala. Unfortunately though, we found out they lost the baby.The news hit me hard. Yes, I know this baby wasn't mine, nor am I a blood relative-but I was truly happy for them, and it gave me a good feeling about life.
I couldn't help but be mad. G-d seemed to be making stupid decisions lately. He took C way too early, and he took this baby too early. And damnit if he hadn't made Moe ill and uncomfortable. Why is picking these INNOCENT people to take, meanwhile I'm here. I should have been dead for about 6 months now. Why am I being left here? I wish He could just drop some sign on me and say "Ashley, this is what you are here for, now get to it".
In the mist of all this survivor's guilt, I thought about my donor's family. How would they feel if their daughter's reciepent was bitching about being 'left behind'. It'd piss them off. I respect my donor too much to give in because I'm not open enough to hear what G-d is saying to me. So my next journey is to find out why. Why He chose to give me 2 lives, and some people one, and some none. Something great is destined to come of all this-so I need to get to work. Sorry for rambling, but the guilt has been piling up for about 2 weeks now and I felt it was time to show that post-transplant is not all 'unicorns and glitter', but we do feel 'down' every now and again-and I'm learning that that's okay, as long as I get back up.
Thursday, May 19, 2011
Never a dull moment~
I'll attempt to make this blog a short and sweet one, though it may be hard since a lot has happened since I last checked in. I've been on an elephant ride, back to the ocean, got a new puppy, rode rollercoaster rides I NEVER thought I could stomach, climbed a tree, went hiking, kayaking...and the list goes on! All those things were fun, and a blessing that I got to experience them at least once in my life =)
The not so great things have been larger-somewhat. I had a hypoglycemic episode at the gyno due to poor judgement of insulin without eating enough. I blame it 100% on my melted gummy bears. I ended up getting my 1st ride in a an ambulance for it, so needless to say my bears and I aren't BFF anymore. I've actually been watching what I eat a lot more, I was sick of just gaining unhealthy weight. Now the exercise and food conciousness has helped all together. Oh, and I don't need to wear a wig anymore!!! The Biotin has helped it come back-and thicker too!
The next not so cool thing thats happened is my CMV(cytomeglaovirus) has come back. I was too immune surpressed causing it to rear its ugly head. But we caught it super early (as TGH is so great to do). I was feeling like crap Tuesday, after clinic Monday. Well, Monday's labs confirmed it was CMV. So Wednesday I had to go get a Cytogam IV again (borrrrring!) and changed some meds around. We were going for a good record of staying on the same list, but I needed a change. Today was better than yesterday, and I suppose tomorrow will be better than today. Every now and then, when I get kicked to my butt it reminds me how grateful I am for those wonderful days I have here...whether sick or not...I'm breathing and thats all I can ask for!!
PS-today is my 11 month breathiversary!!!!
The not so great things have been larger-somewhat. I had a hypoglycemic episode at the gyno due to poor judgement of insulin without eating enough. I blame it 100% on my melted gummy bears. I ended up getting my 1st ride in a an ambulance for it, so needless to say my bears and I aren't BFF anymore. I've actually been watching what I eat a lot more, I was sick of just gaining unhealthy weight. Now the exercise and food conciousness has helped all together. Oh, and I don't need to wear a wig anymore!!! The Biotin has helped it come back-and thicker too!
The next not so cool thing thats happened is my CMV(cytomeglaovirus) has come back. I was too immune surpressed causing it to rear its ugly head. But we caught it super early (as TGH is so great to do). I was feeling like crap Tuesday, after clinic Monday. Well, Monday's labs confirmed it was CMV. So Wednesday I had to go get a Cytogam IV again (borrrrring!) and changed some meds around. We were going for a good record of staying on the same list, but I needed a change. Today was better than yesterday, and I suppose tomorrow will be better than today. Every now and then, when I get kicked to my butt it reminds me how grateful I am for those wonderful days I have here...whether sick or not...I'm breathing and thats all I can ask for!!
PS-today is my 11 month breathiversary!!!!
Wednesday, February 2, 2011
dirty little secret
So the last 2 months since I've blogged a lot seems to have happened. December 9th I had the ever-so-dreaded sinus surgery. I had a polyp party in my nose it seems, and it had been brewing for 10+ years. Not surprised. And the surgery was pretty tough too-again, not surprised. Doc basically goes in and rotor rooter's the insides, followed by 2 visits where he does the same with me wide awake. It was not so pleasant. The worst part was, I made a horrible mistake in taking the medications he prescribed to me without first consulting my CF clinic. I was resistant to one of them (causing unwarranted kidney damage) and the other is a contraindication of my anti-rejection meds. In my meager defense, I was referred to this physician by the transplant team, therefore I assumed he knew what to do with CF post-tx patients. As my dad has always said "Assuming makes an ass out of you and me." ugh.
Well by the end of December my smell was starting to return, allowing me to enjoy the glorious smell of the Christmas tree at my in-laws. I got to smell all the great food they made, which made tasting it even better! We had my niece,nephew,sister and brother-in-law, my husband and I, and my Jewish parents for Christmas dinner at my in-laws. It was very special to me-to have the whole family (minus my NC Kennens') together. This was a holiday I was told I wouldn't have seen without my new lungs-but I can't imagine missing it.
As far as secrets go, some of my meds have secretly been damaging my insides. I figured how exactly a little after Christmas time, when I noticed my hair was becoming even more thin, and I could see my scalp in almost double the spots than before. I'm balding. My hair is not falling out, but not growing back. Every time I brush it, and loose 10 strands of hair, those hairs are not coming back. This led to a mild depression. Your hair as a woman is part of what makes you a woman. I had to resign to the nature of the beast, and I bought a wig. Yes, its quick; I can change my hairstyle easy; and I don't have to wash it everyday-but it isn't me. At home I don't even let my husband see me without a bandanna on my head-I've become embarrassed over something I have no control over. When I went to the doc on Monday though, he gave me slightly good news. This happens to a lot of post transplant patients in the first year. He said the meds basically cause the hair follicles to close off and stop growth, and the thinning is hand in hand with it. So now, I guess I wait. I've been given ideas as to what to do until my hair decides to come back-but some of them are beyond difficult to face. I never knew I was so attached-I knew I had some vanity-but not an emotional attachment. I guess its another choice I was left to make-breathe or have hair. Of course, breathing has definitely trumped all.
Well by the end of December my smell was starting to return, allowing me to enjoy the glorious smell of the Christmas tree at my in-laws. I got to smell all the great food they made, which made tasting it even better! We had my niece,nephew,sister and brother-in-law, my husband and I, and my Jewish parents for Christmas dinner at my in-laws. It was very special to me-to have the whole family (minus my NC Kennens') together. This was a holiday I was told I wouldn't have seen without my new lungs-but I can't imagine missing it.
As far as secrets go, some of my meds have secretly been damaging my insides. I figured how exactly a little after Christmas time, when I noticed my hair was becoming even more thin, and I could see my scalp in almost double the spots than before. I'm balding. My hair is not falling out, but not growing back. Every time I brush it, and loose 10 strands of hair, those hairs are not coming back. This led to a mild depression. Your hair as a woman is part of what makes you a woman. I had to resign to the nature of the beast, and I bought a wig. Yes, its quick; I can change my hairstyle easy; and I don't have to wash it everyday-but it isn't me. At home I don't even let my husband see me without a bandanna on my head-I've become embarrassed over something I have no control over. When I went to the doc on Monday though, he gave me slightly good news. This happens to a lot of post transplant patients in the first year. He said the meds basically cause the hair follicles to close off and stop growth, and the thinning is hand in hand with it. So now, I guess I wait. I've been given ideas as to what to do until my hair decides to come back-but some of them are beyond difficult to face. I never knew I was so attached-I knew I had some vanity-but not an emotional attachment. I guess its another choice I was left to make-breathe or have hair. Of course, breathing has definitely trumped all.
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