Lazy Friday! And Latest Weight Report! May 3, 2013

Today was my day to relax I took a day off from my daily routine and just caught up on rest and some relaxation. I didn't sleep very good last night I think I got about three hours sleep.

I have been getting my blood sugars tested at 3am for the past few nights because I have been having high blood sugars during the night so my insulin was adjusted and I have to be tested for the next few days to make sure I'm not getting to much insulin and I am going low in the middle of the night.

I have also not been able to wear the BiPAP machine very long at night because it makes my mouth and throat very dry and the hospital being so dry doesn't help much. There is a humitifier attached to it by the machine they had me on only has two settings making it to warm for me at the lowest setting. So tonight I am being put on a machine that is much smaller and is more like the one that I will have at home if I end up needing it at home. It has alot more settings for the humidity so hoping it is more cool and humid when I try it out tonight. Still has the same fighter pilot mask though so will prob only be able to go on shorter misisons!

I woke up a few times during the night and couldn't fall back alseep and then at 6am I was woken up so I could get a Blood Gas done while wearing the BiPAP machine to see what my oxygen levels are in my blood. They take the blood from the main artery in my wrist so doesn't feel all that nice especially if a nerve is hit. I have a pretty high pain tolerance and the Respitory Therapist doing it did a good job this morning my wrist is just a little bruised and sore.

So at 7 I am woken up again for my vital signs to be taken, then at 7:30 it is weigh in now a daily event. Then at 8 I am woken up again and told my breakfast is there and I need to take my blood sugars and do my meds. Then again at 8:30 I am told that my tube feed needs to be disconnected bc it was almost empty so I had to get up and unhook and flush it. I am so exhausted from the week that I just need to get a solid hour sleep. So after I eat my breakfast and can hardly stay awake. I let my nurse know that I am to exhausted and will not be going to physio today. So around 10:30 I finally crash and am not woken up till noon when I am reminded that my lunch is waiting and I need to check my blood sugars! Not complaining but sometime a girl has got to get her beauty sleep.

I got to see my Dr today bc of my morning schedule of classes and physio I have missed him for the last four days so today I wanted to see what the plan is for a going home date. My nutritionist had told me that possibly in a week or two was the rumor but after discussing it with my dr he suggested that I stay till I am at least finished my 6week program and I am a bit stronger and have put on more weight. So now looking like till the beginning of June. I'm not pushing to go home yet and agree with the doctor that I need to be good and sting before I leave incase I get the call for a transplant or if I get any type of infection. Also waiting on approval for home tube feed supplies and BiPAP approval

Dietitian came in today and went over a few thing with regard to the home nutrition program. She also has been getting me weighed daily to see if there is a trend happening with my weight. I know your all waiting for the number but you'll have to wait a few more sentences. I am currently still getting an additional 1500 calories a night on top of the approx 1500 calories I get during the day. The dietician wants me to increase to an extra can of formula during the day to see if the extra 500 calories will work. So now the weigh in reports.

April 26- 36.4 kg (80.1 pounds)
April 27- 36.3 kg (79.9 pounds)
April 30- 37.8 kg (83.2 pounds)
May 1- 37.1 kg (81.6 pounds)
May. 5- 37.1 kg (81.6 pounds)

So when getting weighed daily it is usually up and down but I'm averaging about two pounds a week which is an ideal weight gain amount per week. Hoping for it to go up a bit faster though.

Hope everyone has a wonderful weekend.

Tuesday April 23, 2013- Woop Woop Weigh in day!

This WEEK IS ORGAN AND TISSUE DONATION AWARENESS WEEK IF YOU WANT TO BE AN ORGAN DONOR LOOK INTO YOUR SPECIFIC PROVINCE OR COUNTRIES POLICIES ON HOW TO BECOME AN ORGAN DONOR. "LEAVE YOUR ORGANS HERE ON EARTH CAUSE HEAVEN KNOWS YOU DON'T NEED THEM THERE" So this morning is the official third weigh in since I've started on tube feeds and yup Woop Woop I went from 35.8 kg (78.8 pounds) to 37 kg (81.4 pounds) since Friday. So 1.2 kg or 2.6 pounds. Must be all the body building I've been doing at the gym. My base line weight is apprix 42kg (92 pounds) so if I can at least make it back to my base line and beyond it will give me more of a chance to be stronger after transplant. Pretty soon everyone can call e "Fat Ames" referenced from pitch perfect which I'm sure you have all seen! Today I had a busy morning i actually feel like I haven't stopped all day. It started off waking up getting usual vital signs and meds and just as I was starting my breakfast the Occupational Therapist came in to show me what programs were on the 6 week transplant exercise and getting ready for transplant schedule. I had done soe of the classes in the past with my first transplant but they didn't really offer as much as they do now. They even now have support group classes were you can listen and learn from others in the group. I am sneaking in on a few of the other groups classes while I'm in here and then will be officially with abgroup who is there for there 6 week pre transplant evaluations and some needing second transplants. So today while I was half way thru my breakfast at 9:15 I was told that a porter would be here to pick me up at 9:30 instead of 9:45 like originally planned. So yup 15 minutes to get my butt out of bed and try and get ready. NO shower for this stinky lady then other gym members may not have appreciated me today! The class I took today was about an hour long and it was about sleep habits and hygiene and different ways to get proper sleep and how important it is to nap when needed and different thing that can be done to helpvfall asleep or things to do not before bed. Found out that the bedroomis only to be used for two things sleeping and sex. Anything else should take place in a different room so your mind can feel at rest when walking into the bedroom. Watching tv and IPads are no nos but they work for some people as I learnt today the majority if the people in my group dont have problems sleeping. We had to discuss what our nightly routines are when getting ready for bed and people said they have a light snack, watch tv, go on there computers and some even said they relax down stairs and both eventually fall asleep in there chairs and then eventually just move up to bed. I was the youngest person in the class so I told them what I have been doing for awhile especially since getting sick. I usually have a bath with candles every night and just meditateband relax that way I'm relaxed beforeni go to bed. Sometime I read as well and well ya sometimes I amto relaxed and fall asleep that's when I k ow it's been a good bath. Don't worry o always wake up before my face hits the water. Still It takes my mind about an hour to calm Dow. Before I can actually fall asleep once I am in bed. And our nightly routine is running the fan it tends to calm me as well and. Drown out another noises especially Rod and Ryders snoring! Man some nights they are so loud I have to go sleep Donwn stairs. Anyways the gym was better then yesterday at least I checked the incline on the tread mill before realizing that is was up a bit half way thru my workoutnlike yesterday. Today i only had time to go on the tread mill for 20 minutes bf it was time to go back to my room for lunch. Good thing I didn't do weights today because when I got back up to my room my sugars were 2.4 just a little on the low side prob would have passed out had I stayed working out. My diabetes has been really well controlled now that then insulin has been tweaked like 20 times. Right now I only have to take three needles a day. It sounds like list but before I was up to 4-5 needles. And I only have to take it once in morning once at night and once at supper depending on what my blood sugar is. So as long as I eat breakfast and lunch I'm good and don't have to take anything not even with snacks. Always a plus when there are less needles involved. Today I started yet another job! So body builder in the morning, fighter pilot at night and now pop star during the day. They finally found an oxy Arm aka the Britney. It looks like the microphone head piece she wears during concerts. Yo can either direct the oxygen flow towards mouth or nose and it kept my oxygen levels up all day tomorrow I will test walking arond with it on to see if my levels are still good. This is giving my nose a break from the nasal canulas and hopefully it heals. I will post picture on face book and eventually here but for now on Facebook is were the pictures are at under "hospital life" album.

Monday April 22, 2013- a Bit of a rough Day!

Monday April 20, 2013 Well last night I finally got a good nights sleep. I switched up some of my care so the nurses and Respitory Therapist don't have to come in my room every hour. So now it's every two hours! I am a super light sleeper so I wake up at the slightest sound or I can just feel if someone is in the room I think it's my sixth sense. So my nightly routine is the 7:00 shift change nurse comes in and takes my vital signs. Blood pressure, pulse, oxygen sat and checks my respiratory rate. When checking a persons respiratory rate a nurse usually pretends they are taking your pulse but they are really trying to count how many breaths per minute. Anyways I know the trick especially when the nurse isn't even looking at a clock. So it's always hard to get a proper rate on me because I'm always thinking should I breathe now or am I breathing to fast. So I'm sure I've never had a proper respiratory rate for years. Anyways after vitals are done and they check my meds I'm usually free till 8:00pm then the respiratory therapist comes in and rechecks my oxygen sats and sees what my current oxygen rate is set at. They also turn on the Mission Machine and ask me what time I usually want to go on the Missio (BiPAP) at and I usually go on about 10:30 or 11 depending on how busy my nurse is because I cannot talk with the BiPAP machine on so I wait till I'm done with my nightly routing before I get the mask on. Then at 9:00 my nurse comes in and hooks me up to my tube feed so I can get my extra 1500 calories In for the night. So ya thats approx 3000-3500 calories a day. Then sometime between all of that I get ready for bed. At 10-10:30 my Respitory therapist helps set up the BiPAP machine and then between 11 and midnight I am hooked up to an IV med they have to flush my line and hook it up usually takes about 15 minutes. I take off the BiPAP during this because I hate not being able to talk while so eo es in the room. I enjoy talking with the nurses at night bc they seem to have a bit more time and I learn about there lives like one of my nurses is from Polland and he was talking about the war there and what his country and family went thru. Reminded me of the Band of Brothers movie all the stuff he was telling me about. Very interesting So now midnight it's sleep time. It usually takes my mind about an hour or so to relax and fall asleep. Then at 3am my nurse comes in to test my nightly blood sugar test at 3am so I am awake for another 15-20 minutes before I fall back asleep. Then at 7-7:30am I am woken up for blood test every second day or so and at 8am the new morning shift starts with a new set of vital, meds, unhook feeding tube, hook up another IV med, reorder any meds that are needed, eat breakfast(if you know me I usually eat my meals cold bc I take my time and enjoy my food), sometimes I get a shower in depending on when the nurse disconnects me if I'm disconnected to late I don't have time for a shower bc I have to walk down to Physio at 10:15 and then I'm there till 11:45 or noon before I get back to my room. Then I have my lunch till about 1. If I'm lucky I get to go for pulmonary function tests,x-rays or what ever tests the docs decide to send me for. So around 3 I am either trying to have a nap, drawing, face booking, trying to update my blog, message people, return phone calls and wait for visits from friends. Then its supper again and I am trying to relax after the day or get caught up with emails and some paper work. Usually I fit in a few more phone calls to my Hubby,family and friends. Oh and during the day and evening I fit in time to eat more food and snacks when ever I can. So when people ask me if I'm bored or what I do all day that's just a glimpse. Usually a few visits with other Dr and nurses from transplant team as well. So anyways I changed my IV med in the morning to come an hour earlier might as well get it at 7 I'm prob gonna have to wake up shortly anyways. So now that my med is changed I actually have time to shower in the morning before having to go to physio. And now at night I get hooked up to my IV the same time as my feeding tube at nine so the nurse just has to sneak in and hang a med instead of having to wake me up to flush and hook up my line. And so I can have at least 6 hours sleep at night instead of the three interrupted hours I was getting. I stopped getting my blood sugars tested at 3am. Not sure why I didn't think of all that earlier when I was having troubles sleeping. Today my blood pressure has been high all day and most of the afternoon yesterday. Values of 146/102 if you know anything that's a little high for little ol me. I do take a blood pressure pill but sometimes the different meds I'm on in the hospital make my blood pressure spike so will prob be put on yet another pill. Also I have Ben more short of breath yesterday and today. Even walking to the bathroom gets me winded. I have been walking down to physio the last few times because the porter either tries to pick me up to early when I'm not ready or they don't have a proper time slot for me. Anyways I walked down today and had my oxygen level at 6 which is what I usually have my concentrator on while I'm walking and I'm on 4 liters when I'm at rest. I walked downstairs to physio and by the time I got down there I was feeling even more short of breath. The therapist tested my oxygen sats and they were at 76% normal is above 92%. Usually when I walk my sats drop a bit but not quit that much and it usually comes up once I sit for a moment. Today though I had to go up to 8 liters and wear a full face mask instead of my nasal canulas. I usually do better on the mask because I tend to be a mouth breather when walking or doing exercises that involve the bike or treadmill. Usually I've been going on tread mill for 20 minute at a 1.2 slow pace but usually I just prop my book on the tread mill and walk the full 20 minutes without stopping today was rough though. My sats eventually came back up to above the 90's but I would walk for about 5 minutes and have to stop because I was so out of breath and I felt really warm with the face mask on. My blood pressure was also high so my heart was working hard at physio today as well. I made it the 20 minutes thru physio and started to feel a bit better and the mask was helping keep my sats up so I decided to try the bike for 10 minutes. Nope that didn't happen after two minutes I just couldn't take it and had to stop. The therapist decided I should just continue onto doing my arm and leg exercise. I had trouble with them as well today but was able to take breaks between my sets of 10. Not sure if the lazy weekend set me back or there is an infection brewing going for x-rays tomorrow to check things out. I have been having issues with my nose being dry since having to wear and require more oxygen. So last night I was blowing my nose and I had dried blood come out this has been happening for a week now. I had asked about getting nasal gel to help with the dryness but kinda forgot to remind to get it. So when I went to blow my stuffy nos I noticed it felt like the air was going between both nostrils. Upon further investigation I realize I have a hole between my septum. Like really what is this. I asked the doctor about it and he said he has never heard of it except in Cocaine users. Hmmm I hope he doesn't think I'm a druggy! Besides the legal prescription drugs I'm on. Anyways I looked online and talked to an RT and found out info about it. It can happen when on nasal Canual oxygen tubing I had the short ones in so then oxygen was directed at my septula and wears it down if it is weak If the hole gets bad some times plastic surgery is involved but right now it isn't really any concern. They gave me the nasal gel and are looking forbad different type of tubing called the BRITNEY. It's like a micro phone she would wear on stage and the oxygen can be directed at either the nose or mouth and is hooked up like a blue tooth device. so I never thought I would be so busy in the hospital. Fighter pilot at nit and pop star during the day. What else can I do while I pass the time in here. My cousin Jenn and Marcel came for a visit tonight and brought me Thai food from Thai Valley Grill the first time I tried food from this week was the other week when Amy A came to visit me and brought me salad rolls with peanut and spicy ginger sauce and she also ordered me a chicken stir fry and coconut rice. It was so good that I have been trying to get someone to drop me off more. So when Jenn asked me if I wanted anything I said yes then exact same order Amy A brought me. It was delicious again. Thanks for the visit Jenn and thanks for introducing my to take out food other then "Swiss Chalet" Amy! Hoping tomorrow will be a better day. Well it's midnight and no one should bother me till morning now so this chicks going to hit the sack and hope for another good night sleep. Good night everyone. I must be a sucker for working or keeping busy bc I asked Rod to put together the tax stuff and i could get it done bf the dead line. Either that or im a sucker for punishment. Oh and blogging must be helping my mind bc my blood pressure has dropped a a bit tonight but oxygen is up to 6 liters still. Will get it all straightened out tomorrow.

A Week in Review- April 15-19, 2013

So I have to start off by saying I am super behind with keeping everyone caught up but I have been so busy. I know your probably all thinking "what do you do all day". Well here it goes this is my week in review. Oh and hoping to be able to publish this tonight I have been having trouble sleeping so finally got a sleeping pills to help so if I fall asleep in the middle of writing or start sounding crazy we will blame it on the meds! Update a few days later! Ok so the sleeping pill kicked in and I fell asleep was not able to complete much of my week in review. Feeling good tonight though so will be totally caught up! I started going to physio this week. It is part of the six week program that lung transplant patients take before they qualify for the actual transplant. It is a way to build up the body so it is in the best shape possible for transplant. Also it is a way of seeing weather or not a patient can commit to something and they to be willing to try as hard as you can because after transplant it is a life time commitment. And if you don't pass the program then the candidate more then likely will not qualify because they will not take proper care of themselves after transplant. Not only is it an exercise program but they offer lots of classes like sleep hygiene and getting proper rest, wellness thru relaxation, emotional and spiritual well being, tour of the new ICU unit, wellness thru activity management, nutrition,what to expect after transplant, physio home program, as well there are support programs for patients and support person. A lot has changed in the last 12 years in shards to this program. They set it up with groups so you actually spend six weeks with people and I imagine make god friends. Also it helps to talk to people about what one another are going thru. When I originally went thru the program I just remember going to the gym every mon-fri and filing out a few papers with regards to physical and emotional well being. I am not doing all the classes but just the ones that I feel would benefit from or need a refresher. I think I got the what to expect after transplant covered having gone 12 years now. Also I don't actually have to do the full six week classes or physio because they already know my commitment and my success with the previous transplant shows that I can do it! So I started going to the gym on Monday my official group doesn't start till next week so I will join them in classes then but for now I am just concentrating on getting stronger. Monday was a little rough I went on the exercise bike for about ten minutes but had to stop several times because my oxygen sats kept dropping to the low 70's normal is above 90. And I was having extreme difficult breathing and I wasn't even peddling that hard at all. I had been basically in bed and not able to walk around to much since coming in so it may take a bit to get back on track. I did ten minutes on the bike. Then I went and did four different weight machines leg press 45 pounds, vertical row 20 pounds, vertical press 20 pounds and leg curls 20 pounds. Physio therapist told me to only do 2 sets of ten but I pushed and did three sets of ten. Taking longer breaks in between. I was just happy to be finally getting some exercise in. I go to physio from 10:30 till about noon. By the time the porter took me back to my room I was so tired I crashed till 4:00. Tuesday was a better day we tried to switch my Basel prongs to a mask to see if it would help while I went on the treadmill. And it worked my sats stayed up at about 94% I guess I'm a mouth breather when I am walking so the mask is ideal for me. Except for the fact that it makes me feel real hot and a bit claustrophobic. I walked on the treadmill for 20 minutes at only 1.0 but I didn't stop so I felt good. And I continued with the same weights as the previous day. By weds I was starting to get the routine down and starting to show some improvements in my energy I was no longer exhausted after spending the morning at the gym. well a little tired but not as bad as the first couple days. I have kept all my weights the same as they don't want me to hurt myself the first week. Monday I also finally got a PICC line in after waiting for three days. I've had several in the past and because my veins are so abused over the years it's hard to get a good vein that will last for more then a day or two. The last time I got a PICC line in they had trouble getting a line in my right arm because of the different pathways my veins have created over the years. I guess a persons body adapts to things and can actually build new paths for veins to get around scar tissue and what not. After two try's the dr tried my right arm and said that my veins were more messed up on that side and had five pathways instead of the two or maybe three that most people have. They put In one with three ports last time and when it was put in I think a vein was nicked or something because for over a week my whole arm was bruised and swollen. So this time I asked if the dr could review my last PICC line procedure and he decided to try my left arm again also he out in a pediatric PICC because I also have tiny veins imagine that me having tiny viens! Lol the first attempt didn't work because he was having trouble getting the line around the arm pit area. Keep in mind the only drugs I get for pain for this procedure is a needle to numb the insertion site. It's actually not painful at all maybe it is for some people but I think I have a high pain tolerance then most people. Having not felt any pain after my transplant at all I was on some good pain medication then though. Anyways after about ten minutes the dr tried again and was able to get the line to sit were it is supposed to be just above the main heart artery. A PICC line is a plastic line that goes thru a main vein to deliver antibiotics and they last a lot longer then an IV if you want more info them there is always google sorry don't have the time to explain everything and am very grateful for google sometimes. So the PICC line went in good but I wasn't to impressed when I noticed that one with only a single lumen was put in. The dr said that it could always be placed if I needed to use it for more then just blood products. Usually they would put one with two to four lumens in depending on what is needed with just one it can basically only be used for medication and blood withdrawals. But cannot be used if I need blood products, medications that cannot be mixed, CT Scan dies or any other products that I may need in the future was thinking should have confirmed what they were going to do. The dr also told me that he didn't want to do the one with more ends on it bc they are bigger and didn't want to mess up any of my veins in case I really need them for transplant. Just hoping I don't have to get any other products bc it would be a waste of a PICC line. It sometimes sucks being a professional patient with over 25 years experience because I know to much and when I try and tell a dr or nurse what to do or they are not doing something right some of them dont like it. The student nurses however love me because I teach them how to run IVs and what normal routines are and stuff like that. I pretty much do a lot of my own care like I just do self meds because it's easier then having to wait for my meds every day to arrive if a nurse is busy. I put in my orders to my nurse every night and they stock my supply. I only like doing them when I'm feeling good though because when I'm not feeling well I like to be looked after. You know when I start feeling better because I start doing things on my own I now just hook up the BiPAP every night and am able to take it on and off when needed. As well I have learned a lot of tricks over the past years like how to get around the security features on the IV and fix them myself but this is not unusual for us professional patients. Nurses like patients like me because even though I have a lot of care needs I am a pretty easy patient. Years ago before they switched out the tvs for newer ones I even figured out how to get free tv that must have been when I was a lot bored and younger then I am now. And I didn't consider it stealing bc the tv lady new I was doing it and let me get away with it I had no money for the crazy prices they charge for tv rentals. You'd be amazed at what you can learn or pick up after the years spent In hospitals. So it's almost 11:30 and I'm getting tired so this should be pretty caught up will add more during the week now that I feel like Im somewhat caught up. I have a lot more to talk about though and hope im not boring anyone to Much with information over load. I don't like to read blogs that much that are long winded and have no pictures myself so got to work on that. Good Night Everyone and special thoughts and prayers go out to all my fellow Cysters and Fibros in hospital waiting for a chance to be able to take there first real breath! Oh I've met a few people in here waiting for transplant and one girl waiting for a living lobar lung transplant like the one I had but I'm go. A have to leave you all hanging for a day or so cause this chicks tired.

Weekend April 12-14, 2013

Friday April 12, 2013 Well today was my fat Friday which is wear I get woken up at 7:30am to hop onba scale and see if I gained any weight since Tuesday. They are very particular that I get weighed at the same time every Tuesday and Friday and before I put any food in me. So today I weighed in at 35.8 kg (78.7 pounds) that is up .6 of a pound from last Tuesday when I weighed in at 35.5 kg (78.1 pounds). So it's not much but I'll take it bc it's going higher. Next weigh in is Tuesday so this weekend I'm going to just try and lay around and get fat! As per my physio therapist instructions. I had a busy weekend with lots of visitors. Enjoyed it very much and am so appreciative for the visits and the gifts everyone has been bringing me. I feel to spoiled! So now I guess I should explain my new nightly fighter pilot job and missions. The BiPAP machine mask covers my nose and mouth and makes me feel and look like I'm training to be a fighter pilot. So far I am able to wear the mask for about three hours a night it makes me feel super closterfobic and it drys out my nose and mouth so Im trying to get use to it. Been using it about three nights now. Not sure if it is working or not yet. I basically fall asleep with it off and wake up three hours later and have to take it off it's like wind blowing in your fad while your trying to sleep. And the smallest mast they have is still super huge on me. Pictures posted on Facebook under my Hospital stay album. It is hard to get adjusted to how to breath with it I keep trying to think of how I am breathing and weather I should be breathing thru my mouth or nose. It doesn't really matter but when I breath thru my mouth I get more air into my lungs. So I'm having trouble falling asleep but once I'm asleep I'm fine and I just breathe naturally. Also when I'm sleeping with it on I dream I'm a fighter pilot I almost crashed the plane so when I woke up I had to take it off right away. Hmmm maybe some of the meds are kicking In a little to goods. I can't write my blog without writing about Ryders adventure this weekend. For those of you that don't Ryder is my 140 pound Bull Mastiff he is like my child. Anyways on Friday while I was visiting with Gina and Leanne my Kinette friends my cell rings and I didn't recognize the number so I didn't answer it. But then they called right back so I answered my cell and the guy on the other line asked if I was missing a dog. I said I don't know if I'm missing a dog he is currently at my parents house this weekend. I asked the guy if he could stay were he was at till I could contact my dad who was watching him. Funny thing though about 20 minutes before I received the phone call I had a feeling and thoughtn I would text my dad and ask him how Ryder was doing. He texted me back and said "we are at the shop with the dogs" and Tabitha texted me as well and said "we are just working on a goup project" I didn't get that text till later on anyways. I called my dad and when he answered the phone I could tell he seemed really worried and panicked. I Told him I just got a call that someone found Ryder in the ditch on the highway. That's what the guy told me when I talked to him. Right away my heart sank as so did my dads. Thank God he was in the ditch but not hurt. He had just crossed highway 16 and was hanging out between the two major highways. My dad explained to me that they had been looking for him for a couple hours and were so worried that they were going to have to call me and tell me they lost my SON. Anyways needless to say Ryder didn't leave my parents site for the rest of the weekend. I had also literally just got him micro chipped and tags put on him about a week or so before I came into the hospital. I would not imagine what would have happened had there been no tags on him. Oh and while Ryder was on his adventure he somehow got some oil on his paws and got it all over my mom and dads house. So needless to say mom and dad prob didn't have then best experience this weekend. I am so happy everything turned out and Ryder was safe. Don't worry dad Ryder is still going to come for sleep overs at grandpa and grandmas. Anyways not much happens around here on weekends in regards to test and what not. Just get a lot of time to get in visits! So Im off on a Mission for the night hope everyone had a good weekend! Good night!

Back to Familiar Grounds- April 11-12,2013

April 11,2013 So the past couple of days I have been having more trouble breathing. Just getting up to walk to the washroom is a struggle. I am having to take three different puffers several times a day just to catch my breath. It takes a good 10 minutes for me to recover from walking that short distance. So Dr Weinkauf one of the three transplant docs decided I may have an infection coming and should get on top of it. So after being here for three weeks I am now for the first time having to get IV meds. This is very strange for me not to have had any IV meds since arriving usually they are piling them up on me as soon as I get in. So I am now on piperacillin one of the many go to drugs I get when there is an infection brewing. Also he increased my steroid dosage from my regular 5mg a day to 20 mg a day. The bonus of getting extra prednisone is it usually works pretty good for opening up the lungs and helping me breath and it makes me hungry all the time so now my appetite is starting to increase which is nice because honestly I need something to help get me past the same boring menus that haven't changed in the past 12 years that I have been coming to this hospital. It is good that I get to some what pick what I want to eat but am limited to option there as well. Also he suggested that I try going on a bipap machine at night to see if it will help get some more air down into my lungs while I'm sleeping possibly helping with my fatigue during the day and maybe help open up some of my lobe. BiPAP therapy is positive airway pressure that helps open up the lungs when breathing I. And out. The BiPAP machine is used to detect how much pressure a patient needs and supplies the adequate amount of air pressure on inhalation and exhalation. The dual settings of a BiPAP machine helps get more air into and out of the lungs without the normal muscular activity needed to do so. I agreed that I would be will to try the BiPAP machine right now I'm willing to try anything to get some relief. I had been put on a BiPAP machine several years ago before my lung transplant but refused to wear it more then 5 minutes because the mask made me claustrophobic and the dr who was treating me at the time was a resident and didn't know really any of my previous medical history. So in order to be on the BiPAP machine I had to be moved to a different unit the same unit that I have spent most of my time while in the hospital. So much time before transplant that I have been in every room on the ward but one. This ward is the pulmonary medicine ward where there are respiratory therapists there 24/7 to run and monitor the patients on BiPAP and ventilators and such. So on my way back to 5E3 "were everybody knows my name and things are always the same". When I was first admitted to hospital I packed 1 bag but enough stuff that if I was going to stay awhile I should be good. Well I guess not bc the three weeks I was on the gastro ward I have some how collected enough stuff to fill 6-7 hospital bags a full cart of stuff. Better then last time I was in I had my own office set up photocopier, fax machine, lap top the works for my own in patient office. So I thought this time I was doing a lot better. I know I have a lot more to say but I am super exhausted after the day and wanted to post something on my blog last night but a weeks worth of info is a lot. I thought I would get it done tonight but that's gonna be mission impossible. So for now I leave you all with my current up date and hope to get the rest done tomorrow then hopefully things will slow down here a bit and I can update it every two days instead of once a week. I know that the people that are following my blog are waiting patiently for me to post more news so here is some more hope you enjoy! Good Night and God Bless. I'm off on a mission now (will explain that in my next entry) Also pictures to come soon as well.

I know finally an update! April 7-April 10, 2013

Over twelve years ago I would have given anything to just have one more year. I was waiting on the transplant list and my life had come to the point were Cystic Fibrosis was winning the battle I had fough my whole life. I was listed on the transplant list approx June 2000 and was pretty much living in the hospital I'd be out for a week and back in the hospital for a month. When I was home I had lost my independence I had meals on wheels coming to my house and home care helping clean I basically only had energy to lay on the couch all day. But when I was feeling well I thought hey maybe I'm gonna beat this and would-be able to go out and enjoy somewhat of a normal life until the next time I got a lung infection and was back in the hospital. Soon after being listed for transplant the doctor told us about the option of a Living Donor Transplant which we ended up doing because my time was running out and I only had 3 to 6 months survival without the transplant. Two very caring, courageous, and giving men, My dad and Richard gave me one of there lobes for me to live and gave me a second chance at life. A year after the Living Lobar Lung transplant I was living a pretty "normal" life I was taking more medication and it was a bit of work doing personalcrecord keeping but I was now breathing free and able to finally go out and enjoy life. Actually I couldn't wait to start life again start dreaming of realizing those dreams. I went to college, travelled, got married, started a company with my husband, got to meet my now 3 nieces and 3 nephews. Also I got to do lots of public speaking to tell my story. I have done so much I wanted a year, then when that came I just wanted 5 years and now I realize how time truly does fly and I am wanting more. I enjoy life and want to live. And now I am told that I may possibly get a third chance at life. It is hard for me to think that I am possibly going to be given a third chance at life. Especially when there are people who don't even barely get a first chance at life. My life even though I have always been given a timeline. "your only going to live to 9, you won't make it through your teens, forget about seeing your thirties. I'm now 34 and can't imagine how blessed I have been over my life even though most people consider me sick and say that poor girl I consider it a blessing bc withoutnthe struggles I have been throughout my life I would not be the "Strong, Insperational" person I am today and thank everyone for your kind thoughts and prayers. My view on life is that God has already set a plan out for my life and even though not everyone would agree that Cystic Fibrosis, Diabeties, Cervical Cancer, Hysterectomy, and not being able to have my own children (besides my furry ones) isn't fair I believe it is all in the plans and have never judged for the plan that was set out for me. I have 100% trust in God and have never been angry for the cards I have been dealt. There is always someone who is worse off. April 6-7, 2013 So to begin my updates from over the past week. On the weekend of April 6-7 I finally got to meet my new adorable nephew Hadley Ames who I've already prob already wrote this but I was honored when Tabitha named him after me by giving him the middle name Ames. Even though Tabitha reminds me of being a child and my mom using my middle name only when I was in trouble. Oh I can hear it now "Amy Louise" put that back or get down from there. So sorry Hadley Ames you may only be reminded of your amazing Auntie Amie when your momma is yelling at you. Lol Taba. Oh and for those of you that don't know I spelt my name Amy up top because that is how my mom had originally wanted to register my name at birth but bc of a mix up I ended up being Aime on my birth certificate and now bc I didn't think that made sense in grade four and I wanted a longer longer name I started spelling it Amie and still spell it that way to this day. It was exciting to visit with mom and Tabitha as well but the goal was to meet Hadley! The next day two out of my three favorite nieces and one of my two favorite sisters came for a visit. Brandi my sister and Chayce and Kamryn my nieces. They got to dress up in there yellow hospital gowns and gloves and visit with me in my room. After about 2 minutes the girls were bored and wanted to tour the "club med"I have been hangin at. So we went down for a tour. First a bite to eat at the delicious cafeteria "hmmm" then we start to make our way to the healing gardens in the Heart Institute part of the hospital. And the questions start. Auntie Amie what's wrong with that person, imagine if this was your real house, were do the kids hang out, can we hang out there It's my turn to push the wheel chair. They were so excited that I was having trouble keeping up with both of them talking and trying to figure out this hospital life I have been living the past three weeks. Oh and Kamryn had to make sure I was strong enough to hold Hadley when he was here because he was 9 pounds and I'm not very muscular. Lol love kids questions always make me smile. Monday, April 8,2013 Today I finally meet with my surgeon Dr Mullen who did my first transplant. I had been waiting for him to go over my scans and test results. This only being the third time I've seen him since after my surgery I was so glad to see the kind caring man who had a HUGE part I'm my transplant being a success. He was happy to see me again and even though could have been under different circumstances we were glad to be finally meeting up for a long over due chat. He told me that he would be willing to do a re transplant but there would be a few more complications then the first. First of all I have been on anti rejection drugs for twelve years now which I will always be on but can cause complications when there are new organs introduced as well as how they can affect different areas of the body, scar tissue from the previous could be an issue when trying to remove and re hook up then new and old lungs if there is anyone I can have confidence in Dr Mullen is defiantly known as being a well qualified surgeon and would be the only surgeon who would be willing to do a re transplant. He tells me that In an ideal world he would like to do a heart/lung transplant because it would be a better surgery for me to remove my lungs and brokencheart. But this isn't always the case and bc of the shortage of organs they may have to take the first type of organs that come in either heart/lungs, double lungs, or a single lobe. If only lungs or a single lobe are available he will repair my mitro valve while I am having my transplant. He tells me that there is going to be a bored meeting the next day with everyone who would-be involved to discuss my case. He reminds me that my biggest struggle will be getting organs. Tuesday, April 9, 2013 Today is the day that everyone involved in Transplant meets and discuss their cases and the one case will be mine. The transplant team consists of my pulmonologists, surgeon, nurses, physio, social worker, hospital clergy staff and who ever else is involved. The feed back that I received is everyone was in support of me having a second transplant and bc of the success of my first transplant and the way I have taken care of myself they all liked my positive outlook on life. Weds April 10, 2013 So as of today I was officially activated on the transplant list as a stage 2 which is the most critical need for organs list. For those of you who don't know how the Active Transplant List works this is what I have learned. When organs are available within Alberta they are checked against the people on the list waiting for organs from Alberta and if a match is found they give the organs to the person who is in most need or the sickest perso. If two people are good matches they consider who is the most critical and in need and who will have the best chance of survival or who the organs will most benefit. In most causes the persons size and blood type are the most important and they also do matching and some sort of tissue matching with both donor and recipients antibodies. I am going to still face the same harsh reality I faced with the first transplant. I am small, and my body has a lot more anti bodies against other peoples tissue then normal because of the years of anti rejection treatments and my built up of more anti bodies towards more people's tissues. And if organs are not needed in the province that they are in they are offered to another province or state that has someone who matches they will send organs out that way if the time applys to getting the organs to the recipient on time. I guess Edmonton receives a lot of organs from BC and California because of the closeness to Alberta. Also some people are not aware of the process whe. Someone becomes an organ donor. First of all the medical team looking after the potential donor and the transplant do not work together until a final decision is made and the donormis considered to be "brain dead" at this time the only thing keeping the donor alive is the life support system. If there is any brain activity at all the patient is not considered a donor. If the donor has organ failure bf there brain is considered not active then they do not qualify as a donor because you are still considered alive if there is any brain function at all even though there is virtually no chance of surviving and the person will pass away they must be 100% no brain activity. So the donation rate is not very high because of the person have to be legally brain dead and they have to let there family know there wishes. There are some provinces that have moved to a donor registration like Ontario and have a higher donation rate then some of the other provinces without registration. This information is as accurate as I know it to be if anything is not please let me know ASAP. Please if you have questions about organ donation please feel free to email me or just ask and I can give forget you the information you are looking for. Most Importantly if you are wanting to be an organ donor please either register if you are in a province that has registry and/or let your family know what your thoughts and wishes are for donation if your life ever came to that because your family if the one who ultimately has the final say unless you have some how expressed it thru registration or thru a document of some short. Don't take your organs to heaven with you. Heaven knows we need them here. I was so into talking about and trying to inform everyone about organ and tissue donation that I forgot to explain how I am being listed on the transplant list. I am being listed as needing one of three of the following options and I explained it above kind of I think. Anyways ideally they would like a heart/lung transplant were if the organs came as a set it would be safest for the surgeon to remove my scared lungs and leaky heart and put it all in as one package. That way the surgeon is not dealing with the scar tissue and having it affect all the different hook ups that need to be done, second is a double ling transplant where they would replace my current lobes with a full set of lungs and repair or replace my mitro valve in my heart. And thirdly just a single left lung transplant which would have two lobes so I would end up with two lobes on the left. And one on the right so one more lobe then I have been working with the past 12 years and again they would repair or replace my mitro valve. The surgeon said that they need to list me the three different ways because I will have a greater chance of receiving organs and because of the rare chance that organs of my size and tissue type don't come along very often they aren't going to take any chances.

Yikes AWAKE during Surgery!- April 5, 2013

Today I try to sleep in a bit I have been getting tube feeds nightly so I'm still getting use to being hooked up at night. It makes it interesting trying to go to washroom at night between the oxygen cord and the IV pole with the tube feed machine and the two plug ind everything gets tangled and if anyone knows after having a hysterectomy and radiation and chemotherapy near my bladder I cannot hold it very long so ya it's usually a mad dash to the washroom tripping over all the cords. Even had to leave the door open a few times. Did I mention the people on the glass elevators have a clear view to my room and bathroom. Just hoping no one is on the elevators at 3am. So maybe a bit to much info. Anyways the tube feedings are going well except I don't feell as hungry in the morning for breakfast which is my favorite meal here. I'm usually hungry by lunch,snack time,supper,more snacks, and more baked goodies and snacks from friends and family. There's no way im not gaining any weight. At 10:30 a porter for physio shows up to take me for a six minute walk test. I am thinking I don't think I'm going to be able to do a walk test bc I am still in pain from the feeding tube procedure. The Porter said well it's booked so I need to take you down. I'm thinking ok this may be a waste of time but I have not seen any of my physio friends for a few years so I'm willing to go down. When I get there there's no physiotherapists that I recognize so they say we will try the walk test and see how I do. This involves walking around a hallway and see how many laps I can do in 6 minutes. I get this test once a year and the last time I was able to do 7 laps. This time i have an oxygen bottle to pull which causes more strain on my stomach. I start the walk and am barely halfway around and I start a coughing attack which is worse on my stomach. I keep walking though I am in pain and really short of breathe the pain is actually so bad I start to cry. Another physiotherapists sees me struggling and gets me a chair right away. They hook me up to an oxygen sats monitor And my sats are 71 which is really low if you don't know about oxygen numbers. Above 90 is a good number for me but ideally 95 or above is the norm. So we rebook the walk test for Monday by then my stomach should be better. This afternoon I met with the anesthesiologist Dr Finning who was there for my transplant 12 years ago. He basically reminded me what his job was keeping me asleep and safe during the transplant. And he reminded me of the different lines that they put in during the procedure. They will put in a blood pressure line into my artery in my wrist and a catheter into my vein in my neck and I will have chest tubes, a catheter and possible more IVs depending on what is needed during procedure. Most of this I remember. He also tells me about being on a heart lung by-pass machine for the duration of the surgery. This is a machine that takes over for the heart and lungs and the blood is ran thru the machine instead of thru my heart and lungs. Then he tells me or warns me that there is a possibility that I may be awake for part of the surgery. Wait a minute AWAKE during the surgery! I guess sometimes they have to back off some of the anesthetics to see how my new organs are going to work this is usually just for a few minutes and then they give me more anesthetic. I may or may not remember this but he has to tell me about it incase I freak out and that can be dangerous. I won't be able to move or do anything just hear stuff but if this happened and I didn't know what was going on I could panic and cause my blood pressure to become unstable. I don't remember being told this before but that was 12 years ago so my memories not super good. I always said that I remember hearing music during my last transplant. I remember hearing the same song over and over so I don't know if it really happened or not. Getting excited for tomorrow and probably won't be able to sleep I get to meet the newest member of the family this weekend Hadley Ames Ballan was born March 27, 2013 while I was here so ya going to have an exciting weekend.