So yesterday was my Nisan procedure. But the day before I began the prep. That was SO not fun.I tried to do the full prep requirements, which includes drinking a bottle of Magnesium Citrate (i.e-liquid saline laxative) and an Enema. Well I did good- I drank 3/4of the Mag, but then that was it. It came right out the top. So of course, my first thought is that I couldv'e aspirated. So they stopped having me drink immediately. The next step was the Enema. I told them my Enema history of vommitting then too. (I'm so lady-like). So they called the surgeon to ask if it was ok that I don't do the Enema...but it wasn't. And I had a feeling it wouldn't be. Thank goodness, once again, my Mom was to the rescue! She gave it to me instead of a nurse to save me some humiliation. It worked, but I had to do 2 because I wasn't as empty as they wanted. All the while, I'm nervous thinking about the surgery and the risks-some of which I felt weren't complete expressed until the night before. Risks included: perfertion of stomach, bowel leaking which can cause me to go toxic, excess gas causing the need for a chest tube, and aspiration into lungs. So scary! Of course I adore my new lungs...I don't want to ruin them. So these risks, as scary as they sound, had to outweigh the risk of aspirating into my new babies. After a few cries, I was reassured several times by the docs,nurses, and a new CF friend, Emily that things would be fine. I began to feel a little better in the morning.
Jon and Mom were trying to be comforting, but I was so wound up nothing they said was working. So I whipped out the coloring book and colored until the came and got me. Nothing quite like art therapy! We went down stairs (or up?) and thye wheeled my bed right into the O.R....I was not expecting that! I thought I was going to a pre-op holding area. Instead, wide awake with no glasses I was brought into the O.R room. I actually was a little more calm when I saw Dr.Rosemurgy and Dr.Shah. In the OR, usually the nurses are the ones who try to reassure you and keep you calm and tell you everything will be ok-but not this time. Dr. R and Dr.S did it all. Dr. S was very very kind and promised me he would take the best of care of me. And they did.
When I woke up in recovery I was in so much pain I started crying out! I didn't even feel that much pain after lung transplant! The worst part was I was asking for a nurse..and I was basically tucked in a corner without my glass and in pain, and no one could hear me for what felt like 5 mintues. Finally when the nurse came she asked if I was in pain?! I wanted to tell her "no I'm crying because I LIKE this!" Sheeh! Well apparently they were giving me Morphine the whole time, but it was not working at all. So they gave me Diloted instead- and it took the edge off..but not enough! When I got back to the room I started crying because it hurt so bad. Stupid move, because then crying hurt lol...I was screwed! Then, just as I was promised, the CO2 that's released when the stomach is operated on went straight to my shoulders and neck. That made sleeping in a comfortable postion nearly impossible. They also had taking my Fentynal patch away-which I had been with since June 19th! So pain was unbareable. They called and upped the dose and gave me a happy button. But to be honest I don't think ANY pain meds would have helped. Funny thing, the incision is in my belly button-super tiny-but the insides that got cut up were still very much alive and in pain. Dr.R even gave me extra Lidocaine inside in hopes that it would be ok, but it didn't last that long. So last night, due to the pain meds, when I'd have to pee I woke up in almost a panic attack. The first time, I literally jumped out of bed, unplugged, untangled, and disconnected everything and RAN to the restroom...it wasn't until I went to go back to bed that I realized "oh yeah-I'm hurting!" So getting in bed was awful. Mom didn't wake then either-funny because I even had the bright light on! Well, this "emergency bathroom breaks" lasted all night..every 1 1/2 hrs. So it was a restless night. Since Wednesday I've been on a clear liquid diet, plus contiunous I.V. fluids...so go figure I loved the potty! I think we guessed I put out about 2,000 ml over night! Sucked!
Anyway, today started rough-pain was still pretty intense. When Dr.Rolfe came by I told him, and of course I got teary eyed (damn Predinsone,Pain, and no sleep). And he kindly raised my dose of Diloted. After getting that, and my Fentyal patch back I'm finally able to get up and down without screaming. But I'm trying to ween off the pain pump so that I go potty (#2) and make the docs happy enough to where I can go home. Surgeon already said he doesn't need to keep me here anymore and I'll see him in a week whether its here or coming from home (I'm hoping the latter). Dr.Rolfe is waiting/wanting to get me home. So today I started back on clear liquids (after being NPO since Wednesday night). This means no pills by mouth...which also means if it doesn't come in IV form, or can be crushed, then I have to drink it. UGHHGHHHGHG So, I felt like I was on tube feed all over again. Good things is I don't feel hungry because of the bloating from surgery. I just had to drink these 2 things and let me tell you! It burned like fire going down my throat..so hopefully once this passes I'll be peachy. Fingers crossed for a bowel movement so I can go home!
And to anyone who is going to the Golf Tournament tomorrow- THANK YOU THANK YOU THANK YOU! I wish I could be there to show you the amazing difference and how excited I am to be able to have a beautiful 2nd chance at life. I hope you all have a blast, wear sunscreen, win some prizes! =) LOVE YA GUYS!
Friday, July 16, 2010
Tuesday, July 13, 2010
Ready for home
So I had my teaser at home...and now I want it back! LOL This weekend is the Golf Tournament too, but I don't think I'll be making an appearence. I have the Nisan surgery tomorrow (or at least thats the rumor) but then they like to keep me on antibiotics for a day or two after and make sure everything is ok. The surgeon seems awesome-I've been impressed with every doctor I've met here, which is relieving.
So as I sit here, I think about all the things I want to do..and I know I have to "recover" fully to do them...but man I'm antsy. Never in my life have I been able to breathe this easy. My muscles in my legs however, are still very shaky. I lost a lot of muscle mass and weight from all this. I think once the GERD is under control and I'm fully healed I'll be able to get back to a healthy weight. I don't look sickly, but clothes don't fit =( I worry now about the house...I usually ran it when I was home, but I've been gone 3 weeks-and Jon doesn't handle that stuff well, plus he's stressed with me being going through all of this. I'm keeping my fingers crossed its not too horrible when I get back. We had a lot of help from our families getting things cleaned (not that we're messy-in fact, were super clean but we have 2 dogs).I miss those doggies too, especially Henry! He's only 8 months and I want to bond with him.Sarge I know has missed me because when I was home he wouldn't leave my ankles. He was always by my side before transplant when I was sick, he is a very intuitive dog. He would get Jon if I was calling him from another room, or sit in the bathroom next to me while I hugged the toliet. He's a special dog, he needs us like we need him. Henry on the other hand- he just needs anybody...belly rubs are his best friend, and he loves being held. Jon says he's calmed down a lot. He is a hyper puppy and always picks on Sarge (poor kid). Anyhow, I'll stop rambling on..
I wanted to say thank you. To those who showed up for the transplant and waited those painful 6 or 7 hours. How boring! But knowing I had support out there helped. And when I was on the vent and Dad and Jon told me who all was there, I was touched. Honored. I only wish I could have visited with everyone. How far everyone had to come and everything-it means a lot. I had no idea that I was out for a day and a half-kind of weird they can do that to someone right? My body now is slowly but surely waking up...little things like coughing, going to the bathroom,eating...it all had to be kind of "woken up". I'm on a LOT of medications right now to make my body run.I've got stuff to control my bowels, my sugars, my everything-its crazy. I have a cup full of meds every morning! The good news is at home I don't take nearly as much. It is almost the same as what I was taking before, just different meds.The hardest part about being in the hospital? Not being able to see people I know, being far from home, not being able to take care of the house. And I miss work! I think later today I'll walk down to the water again...even though its so hot, I never see water where I live (minus the lakes). I guess that's a nice part of being in Tampa lol..I have a view of the bay from my room, with skyscrapers too- feel like I'm in the big city haha! Cool thing that happened the other day, Jon was here and he told this joke (I won't repeat b/c it was kind of rude) but I was laughing so hard..LAUGHING! no coughing! I loved it..it still kind of sore, so that part hurt but to laugh like that...it was beautiful. I wish all my Cystic Fibrosis friends get the chance to do that. Nothing like laughter =)
So as I sit here, I think about all the things I want to do..and I know I have to "recover" fully to do them...but man I'm antsy. Never in my life have I been able to breathe this easy. My muscles in my legs however, are still very shaky. I lost a lot of muscle mass and weight from all this. I think once the GERD is under control and I'm fully healed I'll be able to get back to a healthy weight. I don't look sickly, but clothes don't fit =( I worry now about the house...I usually ran it when I was home, but I've been gone 3 weeks-and Jon doesn't handle that stuff well, plus he's stressed with me being going through all of this. I'm keeping my fingers crossed its not too horrible when I get back. We had a lot of help from our families getting things cleaned (not that we're messy-in fact, were super clean but we have 2 dogs).I miss those doggies too, especially Henry! He's only 8 months and I want to bond with him.Sarge I know has missed me because when I was home he wouldn't leave my ankles. He was always by my side before transplant when I was sick, he is a very intuitive dog. He would get Jon if I was calling him from another room, or sit in the bathroom next to me while I hugged the toliet. He's a special dog, he needs us like we need him. Henry on the other hand- he just needs anybody...belly rubs are his best friend, and he loves being held. Jon says he's calmed down a lot. He is a hyper puppy and always picks on Sarge (poor kid). Anyhow, I'll stop rambling on..
I wanted to say thank you. To those who showed up for the transplant and waited those painful 6 or 7 hours. How boring! But knowing I had support out there helped. And when I was on the vent and Dad and Jon told me who all was there, I was touched. Honored. I only wish I could have visited with everyone. How far everyone had to come and everything-it means a lot. I had no idea that I was out for a day and a half-kind of weird they can do that to someone right? My body now is slowly but surely waking up...little things like coughing, going to the bathroom,eating...it all had to be kind of "woken up". I'm on a LOT of medications right now to make my body run.I've got stuff to control my bowels, my sugars, my everything-its crazy. I have a cup full of meds every morning! The good news is at home I don't take nearly as much. It is almost the same as what I was taking before, just different meds.The hardest part about being in the hospital? Not being able to see people I know, being far from home, not being able to take care of the house. And I miss work! I think later today I'll walk down to the water again...even though its so hot, I never see water where I live (minus the lakes). I guess that's a nice part of being in Tampa lol..I have a view of the bay from my room, with skyscrapers too- feel like I'm in the big city haha! Cool thing that happened the other day, Jon was here and he told this joke (I won't repeat b/c it was kind of rude) but I was laughing so hard..LAUGHING! no coughing! I loved it..it still kind of sore, so that part hurt but to laugh like that...it was beautiful. I wish all my Cystic Fibrosis friends get the chance to do that. Nothing like laughter =)
Wednesday, July 7, 2010
My Gift
June 19th @ 7:23A.M- I was getting ready to head to breakfast with Jon and the in-laws to celebrate early fathers day, then head to Jacksonville to see my cousins before they left town for a month. I was so excited about the day because we were going to the pool in Jax and I had been dying to get to a pool. But I got the call. I saw a Tampa number and realized that on a Saturday it must be "the call". It seemed surreal. It had only been 5 weeks and 6 days. I was told it could take up to a year! Oh well, we started throwing things in the bags and making calls all the way to Tampa. Everyone was excited and panicky...I was just ready and waiting to see if this was a false alarm or the real deal.
When we got to TGH all I kept asking was "has there been visualization?" Meaning, has the surgeon seen the donor lungs, and are they a match for me or not. No one knew until minutes before wheeling me into the O.R. My mother in law and father in law and parents arrived to see me before pre-op. I had some nebs to do, EKG, blood work, x-rays. I was even left in x-ray for awhile and got worried they forgot me! Turns out they sent transport on a wild goose hunt for me!I was waiting down there for transport and no one was coming and I kept worrying they were going to make the new lungs go bad because I was MIA! LOL...Finally they found me and brought me to pre-op. I didn't realize then, but I didn't have a lot of time for lovey dovey emotional goodbyes. I had people around me at all times-head to toe-hooking me up everywhere. We gave the O.R. nurses my camera to take the pics of the old and new lungs because I was real curious how bad my old ones would look, and how special the new ones would be. The nurses, and surgeon were so kind...encouraging...and really comforted my family, which comforted me. Literally 5 minutes before, Ginger peeks her head in and says "They're good!" That's when we all cheered! I got excited! I was ready...this was awesome! Not once did I think about not waking up, or dangers, or anything-I completely trusted this team and I was ready to breath!I actually remember being transferred from gurney to operating table with what seemed like 20 people rushing around me. It went pretty quick once I was out lol....
I woke up 2 days later to my father and husband looking down at me. I'm not sure if I was still intubated or not, but I remember Jon and Dad telling me how proud they were of me and that it was Monday and Sarge and Henry actually held their potty break 8hrs past their normal time. Jon said I tried to react too much and they had to put me back out. Go figure I would want to talk right away lol...I remember seeing Grandpa and Janette, and Bob and Cheri looking at me through a glass door...a lot of times people were crying. I hope only happy tears...because though I was uncomfortable-I was happy. Jon showed me pics of the new and old lungs. He said I started crying when I saw the old ones, so he took the pics away. They were black though-it was scary. I couldn't look at a piece of the old lung and see where air was going through at all. The docs later confessed that I was pretty bad off and may have not made it another 6 months-and I was the worst case of hypertrophic pulmonary osteoarthritis they had every seen. Scary. But my new lungs were beautiful. White, crisp clean edges, full. Like true angel wings. They look brand new.
So I spent 2 days on the vent, day 3 I was up and doing exercises at 15 and 20 minutes, and day 4 moved to a normal transplant floor. Once the chest tubes were out and my new lungs had some room to expand things got more comfortable. Although, there was a little pain I truly expected it to be a lot worse. I also expected to feel a lot weaker. Everyone (nurses,docs, family..) all seemed extremely impressed with my progress. On day 4 I was walking the halls. I skipped a crucial part!-coming off the vent.
I woke up to Dr.Haddad at the end of my bed in a chair saying "Ashley, you need to breathe. If you don't I'm putting the tube back in there." He was so calm I almost didn't understand what he was saying. I couldn't feel myself breathe. When I did, I made a horrible gurgle noise. It scared me...I was thinking I traded one set of junky lungs where I could cough stuff up to another set where I couldn't..Very much not what I wanted! After a bronch and some suctioning, and few days to give the vocal cords a rest I could feel some air in there! =) I was able to talk without the gurgle...and sit up for longer periods of time. I had to stay in here for 13 days. We were going to shoot to have the Nisan surgery 4th of July...BUT docs need their vacays too and wouldn't be back until after the holiday, so my docs said I could go home and schedule for a Bravo study and the surgery in a week or so and enjoy sometime at home. Real quick I'll explain the Bravo and Nisan. The Bravo pH study is where you swallow a pill attached to a thin tube that clamps to the inside of your throat. The pill stays and the tube is removed. All while your awake. The pill will measure the pH levels and severity of the GERD/reflux I have. Once this study says that it is severe I can have this Nisan procedure done. For the Nisan, they go in laparoscopically and put a band at the bottom of my esophagus so that I don't reflux and aspirate into my new lungs. They also have to move my stomach back above my diaphram so that the stomach will no longer have pressure on it, causing me to reflux/vomit. Until this can be done, I need to be upright pretty much at all times.
So I went home for 3 days, enjoyed my bed, my dogs, and a trip to the store...On Tuesday I had to come back to TGH to get the Bravo placed and get some blood drawn. We had to leave at 4am to be at Tampa by 6am, had my blood drawn and Bravo done and was home by 10:30..just about to lay down for a nap and we got a call from Tampa. My white blood cell count was 31,000...they like 10,000. I had to come back immediately for antibiotics. Now, the day before I was slightly tired, but of course I thought I was overdoing it like I always do..but maybe I was sick? My PFTs were going up, the only thing shaky was my weight-and it was expected because I was on 24hr tube feeds for 2 weeks. I had to adjust switching to real food in just a few days, my stomach had shrunk. When we turned around and got to TGH, Dr. Haddad looked kind of worried. He asked what I did, why was I not feeling awful? I had no clue-I felt fine-just tired because I woke up at 3 am (who wouldn't be!)..He then decided maybe it was a false positive, but was going to start me on antibiotics anyways and keep me here just so he could keep an eye on me until surgery. So- here I am- I turned in the Bravo this morning. I should get results tomorrow or Saturday, then we schedule the surgery. As of now, my lungs are "perfect", and they don't know why the WBC was high, but my RBC is low so I had to get a shot of Procrit (think this is norm though). They also are checking my stool for C.Diff, but I'm pretty confident its not that, because the diarrhea is gone, and I wasn't really hurting from it. I'll admit, this has been a LOT easier stay than most...no tubes out of my chest means I can lay on my side...and I can get out of bed a heck of a lot easier. But I miss people..sleeping regular hours, having dinner done and the house clean when Jon comes home...getting Dr.Pepper ICEES..but I LOVE breathing...I LOVE it...I'm already almost at 2 liters on day 18...and its getting better. My family has been better than ever and life has been more beautiful than imagined. I thank God, my donor, and my donor's family for giving my family and I a chance to be together-healthy. God is good, my doctors were made in His eyes and given His hands to help heal me. Every chance at bad that could have, maybe did, go wrong was corrected to a better standard than what was originally intended and for this I am eternally grateful. Thank you is not enough- I will live my life for myself, and now my donor. I want their family to be honored and my Angel to feel blessed that I am carrying their legacy on.
When we got to TGH all I kept asking was "has there been visualization?" Meaning, has the surgeon seen the donor lungs, and are they a match for me or not. No one knew until minutes before wheeling me into the O.R. My mother in law and father in law and parents arrived to see me before pre-op. I had some nebs to do, EKG, blood work, x-rays. I was even left in x-ray for awhile and got worried they forgot me! Turns out they sent transport on a wild goose hunt for me!I was waiting down there for transport and no one was coming and I kept worrying they were going to make the new lungs go bad because I was MIA! LOL...Finally they found me and brought me to pre-op. I didn't realize then, but I didn't have a lot of time for lovey dovey emotional goodbyes. I had people around me at all times-head to toe-hooking me up everywhere. We gave the O.R. nurses my camera to take the pics of the old and new lungs because I was real curious how bad my old ones would look, and how special the new ones would be. The nurses, and surgeon were so kind...encouraging...and really comforted my family, which comforted me. Literally 5 minutes before, Ginger peeks her head in and says "They're good!" That's when we all cheered! I got excited! I was ready...this was awesome! Not once did I think about not waking up, or dangers, or anything-I completely trusted this team and I was ready to breath!I actually remember being transferred from gurney to operating table with what seemed like 20 people rushing around me. It went pretty quick once I was out lol....
I woke up 2 days later to my father and husband looking down at me. I'm not sure if I was still intubated or not, but I remember Jon and Dad telling me how proud they were of me and that it was Monday and Sarge and Henry actually held their potty break 8hrs past their normal time. Jon said I tried to react too much and they had to put me back out. Go figure I would want to talk right away lol...I remember seeing Grandpa and Janette, and Bob and Cheri looking at me through a glass door...a lot of times people were crying. I hope only happy tears...because though I was uncomfortable-I was happy. Jon showed me pics of the new and old lungs. He said I started crying when I saw the old ones, so he took the pics away. They were black though-it was scary. I couldn't look at a piece of the old lung and see where air was going through at all. The docs later confessed that I was pretty bad off and may have not made it another 6 months-and I was the worst case of hypertrophic pulmonary osteoarthritis they had every seen. Scary. But my new lungs were beautiful. White, crisp clean edges, full. Like true angel wings. They look brand new.
So I spent 2 days on the vent, day 3 I was up and doing exercises at 15 and 20 minutes, and day 4 moved to a normal transplant floor. Once the chest tubes were out and my new lungs had some room to expand things got more comfortable. Although, there was a little pain I truly expected it to be a lot worse. I also expected to feel a lot weaker. Everyone (nurses,docs, family..) all seemed extremely impressed with my progress. On day 4 I was walking the halls. I skipped a crucial part!-coming off the vent.
I woke up to Dr.Haddad at the end of my bed in a chair saying "Ashley, you need to breathe. If you don't I'm putting the tube back in there." He was so calm I almost didn't understand what he was saying. I couldn't feel myself breathe. When I did, I made a horrible gurgle noise. It scared me...I was thinking I traded one set of junky lungs where I could cough stuff up to another set where I couldn't..Very much not what I wanted! After a bronch and some suctioning, and few days to give the vocal cords a rest I could feel some air in there! =) I was able to talk without the gurgle...and sit up for longer periods of time. I had to stay in here for 13 days. We were going to shoot to have the Nisan surgery 4th of July...BUT docs need their vacays too and wouldn't be back until after the holiday, so my docs said I could go home and schedule for a Bravo study and the surgery in a week or so and enjoy sometime at home. Real quick I'll explain the Bravo and Nisan. The Bravo pH study is where you swallow a pill attached to a thin tube that clamps to the inside of your throat. The pill stays and the tube is removed. All while your awake. The pill will measure the pH levels and severity of the GERD/reflux I have. Once this study says that it is severe I can have this Nisan procedure done. For the Nisan, they go in laparoscopically and put a band at the bottom of my esophagus so that I don't reflux and aspirate into my new lungs. They also have to move my stomach back above my diaphram so that the stomach will no longer have pressure on it, causing me to reflux/vomit. Until this can be done, I need to be upright pretty much at all times.
So I went home for 3 days, enjoyed my bed, my dogs, and a trip to the store...On Tuesday I had to come back to TGH to get the Bravo placed and get some blood drawn. We had to leave at 4am to be at Tampa by 6am, had my blood drawn and Bravo done and was home by 10:30..just about to lay down for a nap and we got a call from Tampa. My white blood cell count was 31,000...they like 10,000. I had to come back immediately for antibiotics. Now, the day before I was slightly tired, but of course I thought I was overdoing it like I always do..but maybe I was sick? My PFTs were going up, the only thing shaky was my weight-and it was expected because I was on 24hr tube feeds for 2 weeks. I had to adjust switching to real food in just a few days, my stomach had shrunk. When we turned around and got to TGH, Dr. Haddad looked kind of worried. He asked what I did, why was I not feeling awful? I had no clue-I felt fine-just tired because I woke up at 3 am (who wouldn't be!)..He then decided maybe it was a false positive, but was going to start me on antibiotics anyways and keep me here just so he could keep an eye on me until surgery. So- here I am- I turned in the Bravo this morning. I should get results tomorrow or Saturday, then we schedule the surgery. As of now, my lungs are "perfect", and they don't know why the WBC was high, but my RBC is low so I had to get a shot of Procrit (think this is norm though). They also are checking my stool for C.Diff, but I'm pretty confident its not that, because the diarrhea is gone, and I wasn't really hurting from it. I'll admit, this has been a LOT easier stay than most...no tubes out of my chest means I can lay on my side...and I can get out of bed a heck of a lot easier. But I miss people..sleeping regular hours, having dinner done and the house clean when Jon comes home...getting Dr.Pepper ICEES..but I LOVE breathing...I LOVE it...I'm already almost at 2 liters on day 18...and its getting better. My family has been better than ever and life has been more beautiful than imagined. I thank God, my donor, and my donor's family for giving my family and I a chance to be together-healthy. God is good, my doctors were made in His eyes and given His hands to help heal me. Every chance at bad that could have, maybe did, go wrong was corrected to a better standard than what was originally intended and for this I am eternally grateful. Thank you is not enough- I will live my life for myself, and now my donor. I want their family to be honored and my Angel to feel blessed that I am carrying their legacy on.
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