Tuesday, July 30, 2013

Post Transplant: An update over the past few days...

Submitted by Laura on Fri, 01/04/2013 - 2:58pm

The past few days have been good.  The mornings are very busy!  Joe is back to work and my Mom has a cold, so she is not able to visit.  I asked the doctor how long after her symptoms are gone should she wait to see me, and he said a few weeks!  He said 1 week minimum, but 2 weeks is best.  So, if any of you are sick, or you are getting over something, we have to wait 2 weeks before seeing eachother....that rule is for the first 6 months, because I am SO very susceptible to infection that one little cold can cause me VERY bad problems.  Because of this, I have decided I want everyone who comes into my room (nurses, techs, docs, visitors) to wear a mask.  I don't want to compromise these lungs one bit!
So the past two days, I have woken up between 7:30-8 am, which is nice, and the pain hasn't been as bad.  They are trying to ween me off IV pain meds, which is the next step to get me closer to going home.  I passed my swallow test for solid foods, so now they are trying to get me to swallow some pills on my own, which is another step to going home.  They are thinking maybe Tue or Wen. next week I may be going home!  I am not getting my hopes up because anything can happen, but that is the path we are on.  The other thing they are trying to do is get me off of oxygen.  Right now, I am on 2 liters.  If need be, they would send me home on oxygen.
So my day consists of trying to pound down some breakfast by 8 am because respiratory comes about that time to do my longest therapy (3 nebulizers, 1 ez pap lung exerciser, and chest PT).  The nurse is around at this time to give me all my meds.  There are 3 different doctor teams that come during rounds all before 9:30 am (when it rains it pours!).  Physical therapy my come at this time to exercise me.  I also have to think about doing my incentive spirometer (a breathing machine that helps open my lungs and get goop up) every hour 10 breaths.  This is all before 10 am.  Then, I have to think about taking walks at least 3-4 times a day around the floor.  My rule is that I have to do all my medical stuff before I can do fun stuff (like getting on the PC).  I must do everything in my power to take care of these lungs and help them get rid of the fluid that is still in there and keep them expanded!
My CT scan reveals a significant improvement after the 2nd surgery, so that is a blessing.  They are more expanded with a little fluid.  I can totally breathe way better, as shown by my decreased oxygen needs and my overall "how do you feel?" question. I have been sleeping well and can even sleep on my sides now!  I think things are moving along at a great pace and I pray things continue to look up and up.
Joe and I received about 1.5-2 hours training last night from the post transplant nurse regarding sanitation, food prep, etc. for when I get home after transplant.  On Monday, I will probably receive the Pill Box training, since I will go home on probably 20 medications that I have to take religiously at the same time each day.  I also will have to take my vitals daily when I get home.  For the first few months, I will probably be on nebulizers and they may want me to use my vest for a bit for airway clearance.  I need to be walking when I get home, so I am happy we have the treadmill! After I go home, I have to come back weekly for 4 weeks for blood work and check ups.  I cannot drive for the first 3 months, so I will need chauffeurs when I need to go anywhere .
On another note, while I am elated that I am doing so well, there is another transplant patient that I've become friends with, Kelly Langs, who was transplanted on Dec 6 at Stanford.  Unfortunately, Kelly passed away on 1/1/2013.  This is just a reminder how fragile lung transplant is and how hard I will need to work to keep my lungs safe, expanded, clear, and free from infection.  Please take a moment to read Kelly's blog by clicking here. I am so sorry this has happened and I pray for Kelly and her family daily.  If you are visiting me, I will ask you to wear a mask, remind you to wash your hands, and possibly ask you to do other things to keep me safe.  Please don't be annoyed or offended that I am asking you to do these things, it is for my protection. 
Also, thank you all so very much for your support for the double your dollars.  I can't tell you how much you all mean to me and how much your words on facebook, emails, phone calls really lift my spirits.  I appreciate all of you so very much.
Anyway, lunch is here, my hour downtime is over before I start the next course of treatments, walking, medication, nap, and a visit from Grandma.  Talk to you soon!


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