Thursday, February 14, 2013

02/13/13Where should I even begin?


02/13/13Where should I even begin?
Ugh!  I’m not sure where to start.  Last semester I went to school somewhat part-time and started a job with many hours as an attendant/caretaker for a young woman my age.  The school schedule was not a big deal; I had done that for about a half year before my new job.  Getting back into working was a very big adjustment!  It is not really a physical job, but I was finding myself exhausted all of the time, it took about 2 months before I really got used to working again.  And I used to always be very punctual for work-early even, now I have a hard time getting my butt there in a half hour time frame!  I actually did not know if I would be able to stick with it because I was so tired, but I just kept going!  This quarter I went to school full time, I am taking 16-18 units and working even more hours.  I feel very happy with myself that I can do so much, for me, it is a major accomplishment.  I know I might not get amazing grades, but I am going to graduate-soon!  I feel really good for the progress I am making and returning to be a normal person, I think this would actually be a lot for a “normal’ person. 
I had my yearly done and everything looked GREAT!  My arteries look amazing!  The one thing that went wrong is the opening they had to go into to do the angiogram would not close, in fact it opened more.  My Everolimus causes problems with healing.  To get the opening to heal, I had change to another antirejection med, Cellcept, which made me so sick.  I have rejected a lot on this med and this made me nervous that this might happen again. 
My Zostress/Everolimus (one of my 2anti-rejection drugs) caused me to always be really warm, like I was ALWAYS having hot flashes.  But all of the sudden I noticed that I was very cold all of the time.  I went to New York (my first trip there!) and I felt like I had fluid on me.  I work compression stockings on the plane so I did not swell, I took diuretics to get the fluid off, but nothing was coming off.  So when I got home I called the doctors and after a few weeks we decided to just go see them.  I was not sure if I was having rejection.  I had a cath and it showed low cardiac output and that I had LOTS of fluid (like they almost made me stay-but thankfully there were no beds).  I have been trying for almost a month to get the fluid off and feel better, but I have to be on a very, very heavy diuretic.  This is hard to be on when I am working and in class.  Sometimes it makes me pee every 20 min, it seems impractical.  But, if I don’t take the diuretic I immediately start to build fluid again.  I think I am getting a handle on this, but it’s been about a month.  I am just not sure what caused me to start retaining fluid to begin with; I the biopsy showed I had absolutely no rejection. 
The Everolimus causes my magnesium and iron to be low, my iron got so low that I got exhausted and am having to have weekly IV’s of iron to get it up and to give me energy. 
Some health things not about me.  Back in November my Grandfather was diagnosed with lung cancer.  He smoked over thirty years ago, and was extremely health, walking at least 30 min a day and still working most days mowing lawns and cleaning horse stalls.  He just had one small spot and needed to have a lobe removed.  He had the lobe removed in November 2012.  Since then he had complications related to the lung (filling up with fluids and secretions).  He had been in and out of the hospital since November, but permanently entered the hospital Jan 4.  His lung that he had surgery on balled up, so they decided to remove it.  It worked for a day.  The next day the other lung started to ball up and he passed away that day.  I never expected that to happen.         

7 comments:

  1. you have been having a time of things! Hope that things settle down with the fluid in the near future so glad it was not rejection:)
    I was sorry to hear about your grandfather passing, I lost my mum in the summer suddenly so i know how you must be feeling. But because of my donor I was able to celebrate her 80th with her before she passed away.Congratulations about getting back to study and glad to hear you will be graduating soon please write and let us know when you do:)

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  2. I like this blog from yours. It so happened that your story would help me make my boyfriend strong. He has his heart transplant last year and i am away from him. The only reason why he didnt give up is because of me. He's been through a lot of problems which made him so sad before the heart transplant especially when he knows that his pacemaker can no longer help his old heart. I think he do have same situation as yours he has a heart problem when he was still young also. How can I contact you Allie if in case I do have question from you? I want my boyfriend to live a normal life same as you. I am so glad that you now have a normal life also..:) This serves as an inspiration to me and my bf.

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