Don't Read While Eating

Just waiting to watch the leafs kick ass! (Ya, I know what you're saying, I could be waiting awhile. Very funny.) I thought I'd fill you in on how things are going. The stomach issue seems to be a lot better. They ran many tests and didn't see too much. They did see thickening of the intestines though. I personally think it's my CF getting worse in my digestive system. I've never had it too bad when it came to my stomach/pancreas luckily. I didn't need to take digestive enzymes, even though most CFers do and I've never really had issues with pain, diarrhea or gaining weight. I've now been taking enzymes at most meals and it seems to help. The pain is gone and I'm able to continue doing my PD dialysis. I had to stop for a couple weeks and switch to hemodialysis because they didn't know what was causing all the problems and they wanted to clean me out still. I eat a lot but I'm not gaining weight. I read on the internet that those with CF that don't require digestive enzymes are more prone to pancreatitis so that's what it could have been. I'm still going to have a colonoscopy to rule other things out and I want them to do a physical check on my pancreas just to make sure it's not something else, although I don't think it is. PD dialysis is going quite well. It's generally easy and not that intrusive in daily life. I just worry that it's not cleaning me out the same way hemo did because I felt the best when I was on that. I'm going to be have a PET test soon to measure the permeability of my peritoneal lining. That will tell us how well it's working. I've been really tired the last couple days and I was actually starting to feel more energy prior to this so who knows. I have a funny story which I'll share because, well, you gotta laugh at things sometimes. Jeff and I went to the Keg for dinner because tomorrow I can't eat anything solid so I wanted to fill myself up. Keep in mind that a few weeks prior I was suffering with vomiting relentlessly and I constantly had to scope out the washrooms wherever we went. Lately though, I've been fine. No nausea, no vomiting so I didn't really think about it and we were seated far from the washrooms. Midway through the appetizer I had to vomit. I had to make it to bathroom FAST! I grabbed the cloth napkin, covered my mouth and went for it. I barely made it but all seemed to be well after I...you know. I came back and seemed good to go so I dug right into my steak dinner. I felt pretty good but suddenly I didn't feel so good again. Normally after I puke once I'm good so I just figured it was because I wasn't that hungry. Suddenly I knew things were not good. I knew I wouldn't make it if I ran to the bathroom so I tried to use mental powers to calm my stomach (hahaha) but that didn't work so well. Just as the server was coming over to help us I barfed all over the place, spewing vomit all over the wall and the picture. It was so gross and embarrassing. The poor server. I'm sure he was thinking that he doesn't get paid enough for this. We tipped him generously lol. Jeff had to point to the top of his eye to tell me I had lettuce there lol. It was horrifyingly embarrassing but what can you do but laugh right? This is not the first time this had happened either, that's the worst part. Anyways, I appreciate those of you that read my posts and your comments. Love you all :)

PD in the PM

So I've started the process of peritoneal dialysis. I had initially wanted hemodialysis but my veins were too small to insert the fistula, although, I'm quite happy I had to go this route because I think it's much better. After my last post I had a couple hospital admissions. My creatinine was upwards of 600 something, I was drastically anemic (hemoglobin 59 at one point) and I required two different blood transfusions. They inserted my PD catheter quickly once I was a little more stable and started the dialysis as an emergency start, barely waiting a week for it to heal. Afterwards, I started the month long process of daily dialysis treatments at the hospital with one of those weeks being a training week so I could do it at home. I'm now officially home and it seems to be ok but now I'm dealing with a stomach issue that causes pain intermittently and I can't really eat. I'm going to get a scope and biopsy on Wednesday. They checked for a peritoneal infection and gall stones and it doesn't seem to be any of these things. It's really bothering me. I just want them to figure it out.

Kidney Failure and other things

Ok so time has passed and things have changed. I'm still struggling with kidney failure. My creatinine is now over 400 and the Dr. said I need to start the process of dialysis and eventually kidney transplant, so I see the vascular surgeon on August 12th. I'm tired a lot but I'll also have bouts of insomnia (like right now...it's 3:45 a.m.). I'm nauseous a lot and often vomit. My appetite is down quite a bit and I've lost weight. I also deal with lovely diarrhea (nice eh?). A year back, I switched my anti rejection medication from Cyclosporine to Prograf because they thought it was the Cyclosporine doing the damage. It obviously didn't make too much of a difference. My hair fell out quite a bit after starting it which sucks! I know it's 'just hair' but, as a woman, this can be tough. I've slowed it down by taking zinc and using a shampoo for cancer patients. I have nasal polyps which have completely blocked my sense of smell and therefore, my sense of taste. What else? I proceeded to go back to work a couple months back but now I'm not doing great again so I think I'll have to wait until I start the dialysis. I'm probably going on home hemodialysis. It suits my lifestyle since I don't leave the house much anyways and I work from home. But enough with the negative, I do have positive things too. My lung function is still amazing and no rejection or infection in the last 4 and half years (knock on wood). I'm still trying to golf when I can. I love it. I'm not great but I don't care, it's so nice to get out in the sunshine and quiet surroundings. I watch all the Blue Jays games and get right into it which always makes for a fun summer despite being inside a lot. Family, friends and especially hubby are all amazing and support me with endless love. I really notice my mental strength going into dialysis is somewhat stronger than I've been in the past. I guess that's what this whole journey does, unbeknownst to us sometimes. I always refute claims that I'm a hero and 'so strong'. I've always felt that it's just something I have to do and anyone else would do the same (which is true) but regardless, the process does inject a certain amount of fearlessness and bold face determination to fight! I really do look at it this time around as though I'm a warrior and my battle field is chronic illness. Bring it on motherf***ker!! If I lose, I lose with honour because I fought and I fought hard. My muscles are weak and yet I've never felt so tough. We all have our battles in life, physical, mental, societal, economical, etc. but perspective makes all the difference. I live by that. It can mean the difference between winning or losing, standing still or moving forward so always try to see the other side. Laugh as much as you can. Don't get me wrong, I know it can be tough, I deal with depression on an ongoing basis. That can be a battle in and of itself but I try to remember the word 'perspective' any time I sense the equivalent of a mental black hole coming on. Sometimes it helps and sometimes it doesn't but I know it's helped me many a times laugh at myself and the situation, even it's by no means funny. I find the humour anyway I can. I'm nervous about the process but I really just want to get the initial start-up over with and get into a routine. I hope it makes me feel better, which I'm sure it will. I'll try to update soon, Bye for now. My super duper awesome nephew Jack, My and my hubby Jeff on date night, Me supporting women's equality, Norman and my favourite picture of Jack.

Venting

It's been awhile. I'm three years post transplant and things are not too bad. My kidneys have been giving me issues, as well as some side effects from my drugs. I'm tired a lot and, for awhile, I was nauseous almost all the time. The nausea has subsided, thank god, but I'm still tired a lot. The doctors say I can't be feeling symptoms from my kidneys but I think my body's just sensitive to stuff going on. My kidneys are failing but they're not in end stage yet. They're in the third stage. My eGFR, the last time I knew, was 30, which is on the cusp of third stage (moderate) and fourth stage (severe) and that was back when my creatinine was lower. I'm going to see my kidney specialist tomorrow to talk about where I'm at. I have so many questions. Sometimes I feel like I'm being forgotten though. I've known about my creatinine being super high since my three year assessment in July. The Dr. seemed concerned and said I should talk to my kidney Dr. about it. Well I still have not had a conversation with her. She sent me for blood work almost weekly but I was unable to get any answers to my questions. I wanted to know if I should be worried, if I was heading to end stage. I wanted to know if there wasn't anything she could do and that's why she wasn't getting me in. My creatinine was high at 170. That was a year ago. Then in July, they told me it was up to 260! What does that mean? So I've had to wait until now to get answers and in the mean time I've been obsessing over it. I have a nurse practitioner instead of a GP because she's so much better than any GP I've ever had, and I've switched between a lot in the last few years. She's my middle woman. If I didn't have her, I'd feel like no one was paying much attention to me. She gets on people. The first year, everyone's looking at everything and then they basically say you're on your own with your GP. Well most GP don't have a clue what to do and our situations are complicated. I have so many specialists that they all assume the others are looking after it, or at least that's how it feels. I know I don't have anything to complain about really. It could be a lot worse. I'm feeling depressed though because I want to sleep all the time. And, because no one can tell me why this is, I feel like maybe it's in my head and I might just have to live with it. It can feel debilitating sometimes because my whole life seems to exist in my bed. I've decided that I can't just keep going like this and if it isn't anything physiological then maybe it's psychological and I need to just live through it. I'm going back to work. I'm not sure if anything will change so I'll just go on and push through it. Well enough negativity. I do have a lot going for me that's good in my life. Despite being tired I managed to get out and learn golf this summer. It's a great sport! Even if I'm feeling out of breath, I can still do it with the cart. I love it. My husband could not be a better partner to me. He's always there for me. Our relationship is always being tested and we still come out on top. He stood by me through my illness. And now, because of said illness, we cannot have biological kids, which we both really want. It's really hard because EVERYONE we know is pregnant or has kids. We feel alone sometimes. But, we remind ourselves that we have each other and that we'll make the best of it. There's always a positive to every situation, no matter how small. I really hope that all my fellow lung transplantees, who are not feeling well, get better soon. I'm thinking of you. I'll update tomorrow on what my Dr. said. Later, Carla Our new puppy, Norman. He's the best :)

Time - good or bad?

Time is a funny thing. It really is illusory in the sense of duration. The same amount of time can go by quickly one day and pain-stakingly slow another. Lately time has been flying by. My health has been as good as ever. Nothing, absolutely nothing to report in terms of transplant news. I'm glad for that. I've been training for a dragon boat team for the past couple months. Now some of you might be asking yourself what could you possibly be doing to "train" for dragon boat, you pick up the paddle, row and have fun, right? That's what I thought too but this team is hard core! We had eight weeks of dry land training which is code for "kick our asses" training. Now we are set to finally go in the boat. I'm excited. I'm actually getting muscles I never knew I had. I feel physically strong for the first time in a looooonnnnnggg time. I need to do this to prove to myself that I can and will accomplish whatever I want. For such a long time the words disease and sickness and now the word transplant have floated around my mind, forcing me to make assumptions about what I could achieve in life. Having limitations placed on me constantly was hard. Now I feel limitless. I love feeling my lungs breathe so hard that I feel like I want to puke with exertion and then quickly recover only to go again. The way my muscles burn with lactic acid and then pushing a few more reps out. I makes me feel so alive. I'm so connected to my body in a way that I've never been before. I truly appreciate it and all that it can do but I especially appreciate the lungs. Not an exercise session goes by that I don't think about the amazing job they are performing. Thank you donor again and agin, endlessly. So with all this going on in my life plus work and just the daily grind, time has just skyrocketed. But, when my sister said that her chemo was almost done, I said "wow that went by fast", she then replied "ya, maybe for you!?" I realized that I've been insensitive to her hardships, assuming that time was flying by for everyone but when you're in the throws of it, it can feel like time stops. I'm very proud of how she's been handling this though, not that I expected anything less. I can't wait for her to feel life fully again. She only has three weeks to go. She's a true warrior princess :) My mom too. She's our rock. She is the reason we are still alive because she is there guiding us through the storm, always strong. It's been very conflicting for me lately. I've felt kind of guilty for living my life so fully and, in a way, selfishly because others don't have that luxury at the moment. I just feel like I need this so bad right now. Even writing this I feel like no one wants to hear people gush about all that's perfect and how happy they feel. It's sometimes easier to connect to dark times, unfortunately. I almost feel like I'm on a different path than everyone in my family, that I've branched off but I shouldn't have and now I'm kind of alone. Understandably so and I know they'll catch up but should I turn around? I guess I just haven't let things get me down because I know, with certainty in my heart, that everything's going to be ok. I haven't let any other thought enter my brain. Maybe that's avoiding the situation, but I think it's just true faith. I know I could be a better person in so many ways. I know I haven't done things the way I maybe should have. I want to give back and help people. That's my ultimate goal. In what way, I don't know yet but someway. I know this post has been kind of elusive and I understand if know one gets it. It was more of a rambling for myself anyways. I love you guys, good night!!

I'm sorry for being M.I.A.

I'm a horrible blogger! I apologize to anyone who was patiently waiting to hear my life on the other side. Before I go into that, I have to be a bit honest here and admit that I have been avoiding a lot of what consumed my former life, blogging included. I did such a 360 that I wanted to pretend, at least for a little while, that that part of me didn't exist. Seeing people still on the list, getting sicker and even passing away, was something I had an even harder time dealing with because of the guilt I felt for being given a second chance out of pure luck and nothing else. When I heard the news of a fellow cyster passing away, who was truly loved by all, it really affected me. And, although I didn't know her personally, I know she was a good person. I cut myself off. I haven't been following facebook that much either. I'm starting to hear a lot of good stories lately though, of people receiving their second chance and I've been slowly coming to terms with my old life and feel that I'm ready to face it, not with fear, but, with a better understanding of what it took to get where I am today. I need to be a beacon of hope to all those that wish to take this path. I need to be strong because that's what it takes to start AND finish this journey.
So I guess it's needless to say that I've been doing pretty awesome. I've been busy living instead of existing, which is what my life was like prior. I had a bit of rejection at my three month mark, which they promptly got rid of with a super high dose of prednisone (I forget the name of the IV drug). I didn't sleep for three days straight on that stuff. All the effects I felt in the first little while after having the transplant have long since gone and I feel pretty normal now. I still notice a little bit of a puffier face but that, and the scars of course, are the only tell tale signs that anything was ever wrong. Our lives here were literally getting back to normal. We had an awesome summer. Jeff and I bought a brand new (oxymoron here) century home. We LOVE it! We cut down a Christmas tree today and it suits the place perfectly, just like my new lungs. I guess everything that has been happening has been pretty symbolic in that it has all been fitting into place so perfectly.....until now. Yep, the shoe dropped and my family got wind of some pretty terrible news about my only sister, who happens to have cystic fibrosis as well but that is not actually the worse part. She was recently diagnosed with Hodgkins lymphoma cancer. That dreadful word. We must have been a cruel family in another life. She's a new mom, a caring wife and absolutely loving daughter and sister. She doesn't deserve this. Just as we take our boots off, and throw away our battle swords, we are called back to battle. But, fight we will and we WILL win this war. Our family is one tight unit, we are lucky for that. She is strong like bull! Hahaha. I love her so much that it hurts to think about all of this. I don't want to watch her suffer. I realize now how difficult is to be on this side, watching those you love go through something you have NO control over. It's a whole other dynamic of illness that I really have not yet experienced. I was not around when my grandmother got sick with cancer because I had moved away to college. I didn't witness her getting smaller, weaker and sicker by the day. This will be tough, to say the least. What will keep me going is knowing that she WILL be okay at the end of this. They say that if someone is to get cancer, this is the cancer to get because it has such a high survival rate. So no doubt she will come out on top, it's just going to be shitty getting there.
On a more positive note, my nephew is the cutest little guy ever! He makes us all smile and laugh everyday. I love having him in my life. I can't wait to be the cool, goofy aunt. I never thought I could love someone else's child so much but I've fallen for him like he's my own.
Well my computer is about to die so I have to cut this short, although I'm sure there's a lot more I could ramble about. I will really try to update more regularly now that I have started back in.
Congratulations to all those who have recently received your second chance. I have been reading your blogs and smiling knowing you will love it!! I'm so happy for all of you. And for those of you still waiting, your time WILL come so stay strong and keep fighting because It's sooooo worth it. I know you read that a lot when you're considering transplant and trust me, it's the truth.
Love you all,
Carla :)

Thank You Donor, Good Night!

So it's 17 days out of transplant and I'm feeling damn good. That's not to say that I feel perfect physically, yet, but it's coming along. I came home yesterday after they finally removed my last two chest tubes. I'm not even all that sure they should have come out as they were still leaking quite a bit, more than I thought the doctors liked but I'm putting my faith and trust in the very smart doctors, that they know what they are doing and not just pushing me out the door because it's a long weekend. Not that I was complaining! I'm so happy to be home sitting in my nice quiet, soft bed. Eating home cooked meals under the warm sun, only to finish the nights off around a fire watching fireworks with the ones I love. It pretty much doesn't get any better that this. And that is why, even though I'm having some side effects show up, I'm still very very happy. These sides effects include the fact that I'm up right now at 2:15 a.m. and cannot fall asleep for the life of me. This is after a day of getting up at 8:00 a.m. and not having a nap all day. Not to mention the fact that last night I didn't fall asleep until around 3:30 a.m. because I was having tremors that caused me to contract my muscles constantly. How am I NOT tired? As for the tremors, I'm guessing they were because I discontinued using any sort of narcotic and it was a withdrawal symptom. I was also sick to my stomach and throwing up all day yesterday. As for today, I'm quite puffy. I woke up feeling like a was run over across my chest. I took 2 Tylenol to alleviate that problem but everything still feels tight around my stomach and my chest, as if my new lungs are trying to push the borders of their new found home but there's no where for them to expand to. I push my stomach out to allow for more room and do some breathing exercises with my bong-like device to stretch my chest. It helps a little. I'm also retaining water now that the chest tubes aren't leaking the excess fluid so my face is noticeably bigger along with my belly and my legs, almost overnight. It's kinda freakin' me out, I'm not going to lie, but I know it will subside eventually so I'm trying not to worry too much. My family thinks I'm crazy, by the way, but I can see it in their faces that they see it too, they're just trying to be nice. That's a question I'd like to pose other post-transplanters, how long did it take you to notice the swelling go down? My prednisone was lowered today to 20mg and next week it will be 15mg.
I spent one hour today sorting all my pills into the cool pill dispenser the nice pharmacist gave me. It's makes it so much more convenient. I also went on two walks outside. No O2. No tubes. No tanks. Just my hubby, my dog, my mom, my sister and my nephew. Nice! I even found myself saying I was restless. I have to remind myself to slow down a lot. I want to do so much more but I have to wait for my body to catch up to what my mind can't wait to do. I AM only a little over two weeks out of major surgery, after all. But, I'm so excited. I've even emailed some people on Kijiji about buying their Bowflex machines because I can't wait to start working out again. I have been an avid exerciser since I was in high school so it just feels natural to work up a sweat to me. When I was sick I stopped working out accept the little bit I did at physio, because, well, I just couldn't. My legs are a little wobbly from the two weeks in the hospital but it could definitely be worse. Physio works! Oh another thing, the nerves in my hands and feet are extra sensitive now. They feel warm water as if it's scalding. By the way, I'm really not trying to complain here. I'm really just relaying my experiences. I'm extremely grateful to be on this side and I'll deal with all these things as they come.
I had my first Bronchoscopy last Tuesday. It wasn't as bad as I thought. The worst part was gargling that nasty freezing stuff. I didn't even gag when they shoved the swabs down my throat. I was pretty conscious too. They probably could have given me a bit more sedative although coming down off those is brutal. It knocks you right out. It was all women in the room and I felt very comfortable with the doctors and the nurse. They said everything looked like it was healing really well. I coughed up a little blood later that afternoon but it's normal to have a little after they biopsied.
What else? Things are progressing the way I figure they're supposed to for the most part. I'm regular now, which took a while because of the pain medications. I had to drink a fluid called 'GoLytle' a couple times in the hospital. I doesn't make you Go Lightly, it makes you Go Lots! Although today I noticed I didn't pee all that much which is why I'm sure I"m noticing the puffiness everywhere else. Should I be drinking less? I assume I should be drinking lots of water to help flush my system out.
Anyways my friends, I'm going to attempt to fall asleep again. I'll stop grossing you out with my excretion stories.
From a very elated girl with new lungs: Thank you donor, good night :)