My Story From The Begining

Wednesday, 22 May 2013

Warning this blog contains dealings of Frustration! ! May 21,2013

Today I'd like to start off by wishing my mom a Happy Birthday! I couln't ask for a more caring mother. She works so hard to look after everyone and I am so proud of her for what she has accomplished over the last year with her new healthy lifestyle and amazing success with her weight loss. I ha e truly never been so proud. Love you mom!

Yesterday was two months since coming in to the hospital and over a month since being activated on the transplant list. I am in the home stretch now hoping to be going home at the end of May or beginning of June. I am going to be done my 6 week physio program on May 31 and am getting things lined up to be able to go home. I will be going home with a feeding tube to help gain more weight and maintain what I have gained. I am waiting on approval for a BiPAP machine so my lungs can have a break at night and help me conserve the calories and energy I need to stay strong. I will have my PICC line in in case I end up needing anymore antibiotics as a regular IV won't last more then a couple of days bc of all the scar tissue from years of being poked and prodded. And I will be going home on oxygen 24/7. My need for oxygen has gone from 2 1/2 to 3 liters when I came in to 5 liters when at rest and 6-8 when walking. My oxygen company came here today to help set up a new portable machine so I can still go out and about and not have to worry about running out. The same machine I had before but this one would be able to give me more oxygen. The portable machines are nice bc they can be plugged into a vehicle, run off a battery or plug into the wall. Now here is the frustrating part. The portable machine only goes up to 5 liters and that is not continues flow that is with a pulse flow were you get a puff of air each time you take a breath. My body does not hold up my oxygen levels right now with the pulse setting and would need to be on continuous flow so therefore I am extremely frustrated as I will have to use cylinders to keep up with the oxygen I am now needing. I will have to get use to them but on six litres of oxygen they only last about an 1 hour to 1 1/2 hours and they have to be refilled by the oxygen provider so If I want to go anywhere I have to try and pack enough bottles to get me to and from my destination. I was planning on hanging out at the lake a lot this summer but my eight hour golf game is going to have to be cut down to an hour or two. The oxygen company can deliver full cylinders once a week but just to the town a d not directly to the lake. I hate this I feel like Im already starting to loose my independence and I haven't even left the hospital yet. My concentrator still works at home or plugged in but it is not portable. Also it will not be easy to drag the cylinders if I want to do simple stuff like go to the grocery store or visit anyone. I am so tired as it is having to drag them around is gonna be frustrating. But I'm go. A do what I have to do to stay healthy till a new heart/lungs arrive. I am also thinking I am going to have to hire someone to help me with just doing simple things that people take for granted. I am frustrated bc I enjoy being able to take care of myself and I e joy my independence. I am also frustrated bc my blood pressure is still really high and may have to stay or go on more blood pressure meds. I don't know if the high blood pressure plays a part I. My anxiety and stress lately or if Im just doing to much thinking lately.

Today was the first time I actually realized how sick I actually am and need a transplant sooner then later. I appear to look healthier then I have for a long time but these darn lungs are not keeping up very well. Maybe I just need to get home and get cuddles from my Kitty and puppy Ryder. My pets always make me happy!

Oh and I met with the Transplant Phychologist today got to talk to her about everything and anything it was nice never talked to a psychologist before but she had some good advice especially when it comes to thinking about myself and my health instead of taking other people's situations to heart. I have a heart for everything and everyone and I take it on even if it's just stuff I see on tv like the tornado in Oklahoma or family matter with a sister! I tend to worry more about them then myself but it truly is because I care so much. I have been trying to learn to not take everything in and send out good vibes and then just tell myself to not stress over it or to bring it to God in prayer!

On a more uplifting note I was visiting with one of the girls in my transplant group and her sister and when wee were walking back to our rooms a nice older guys stopped in the hallway like he knew one of us and said to us "oh wow look three angels" he made each of our night and we really appreciated the kind words. Made our night for sure. You have now idea how much words like that or just a smile can help make your day!

Thanks for reading tonight I do t usually get frustrated and try and feel strong but just needed a little vent session to get some stuff off my mind. Oh and don't forget everyone be kind to one another.

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