My Story From The Begining

Wednesday, 24 April 2013

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.

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