Out and about

Well, I actually fell asleep Saturday night back at the hotel at 6:30 am. I was up all night tossing and turning. I am going to attribute that to the 30 mg of prednisone they have me on per day. My body is used to only 5 mg/day since 6 months post-lung transplant (with the exception of 10 mg/day for a few months during that time). Not only does prednisone keep you awake, give you a “moon face” and make you hungry (which for me is a good thing), it also makes you very irritable. I think I can deal with all of them except the irritability. My family also has a hard time around me when I’m on this much pred. Talk about “roid rage”.. it is a very true statement. Thankfully, they will start weaning down my dose in about a month, and I again should be on 5 mg/day in about 4 months. If everyone can just put up with me until then, things will be good. J

 

There really is no comparison when it comes to this transplant as compared to my double lung. This is like a splinter in my foot compared to the first one. I would truthfully say that I would go through 10 kidney transplants again before ever having to go through the lung transplant again. Not only does the double lung transplant really traumatize your body, the recovery just takes so long. It also comes with many more complications than the kidney transplant does. The recovery is about 5 or more times as long, and the first time, I had to stay in Durham for 3 months post-op for rehab. I think one thing that made it so bad for me was the fundoplication (or stomach wrap) surgery I had to get 3 weeks after my lung transplant to stop me from having reflux. That was a really tough surgery and it just really set me back a few notches in recovery.

 

I know that Jason had posted earlier about them keeping me sedated and intubated longer than expected this time around. I was supposed to be off the ventilator completely by the time I got to ICU, but they had to keep me intubated and sedated for 24 hours. When I got my mom’s lobe of her lung, it was large for her size, which was the only reason I was able to get it in the first place. When an adult gets a living lobar transplant (where both lungs are removed and replaced with only 2 lobes from 2 different donors), the lobes have to be rather large so that the recipient’s oxygen requirements can be satisfied. They knew that my uncle’s lobes would be large enough because he is over 6” tall. My mom is 3” shorter than me, so they hadn’t even tested her. I was quickly running out of time, and so they decided they would go ahead and test her anyway, It was a blessing that her lungs were large for her body,

 

Well, this time around… it almost wasn’t a blessing. I have a very small frame and therefore, when they went in to insert the 3^rd kidney they almost didn’t think it would fit. It was almost too large to use. They kept me sedated and intubated so that I would stay still and not move for 24 hours so that the kidney would have time to anchor itself in there properly. That’s the main reason why I was in ICU for so long. They are saying I could quite possibly always have a little “bulge” there where the new kidney is, because of it’s size and my small frame.

 

Well, our day really didn’t begin today until about 4:00pm b/c we slept in and had meds to do and got a semi shower. We then went to the bar/restaurant area here in the hotel which isn’t that good. I was really looking forward to a crabcake sandwich, but it greatly disappointed. I did my IV’s while we sat and ate, and chatted with my kidney transplant coordinator. She had to bring me some paperwork and instructions for this week. We then ran some errands, and came back to the hotel for some more yucky food.

 

Tomorrow, we have to be a Duke at 9 am for blood work and then we have the rest of the day to goof off between IV’s until we meet some friends tomorrow night at a local Asian restaurant which has quickly become our favorite Japanese, Thai, Chinese, Sushi rest. Downtown Durham has some really great restaurants. On Tuesday, I have a rheumatologist appointment to get my fibromyalgia checked out and hopefully start on a new med for that. My dad will be here Tuesday afternoon, and Jason will head home. He has to be back to work on Wednesday. I will have a clinic appointment Wed. morning with the transplant surgeon, more blood work, and then I should be able to go home. Talk about a short stay in Durham. How awesome is that.

 

God has blessed us with so much, and He continues to amaze me each day. I am so thankful for my mom for once again saving my life, for my awesome husband who is literally at my beck and call with no complaining in doing so, for my dad, who is always there for us and gives the best advice always, for my sis and her family who come running whenever I need them, for my sweet baby girl who couldn’t possibly comprehend how much I am missing her right now. I can’t wait to see her on Wednesday.

 

Thanks so much for all my family and friends for your phone calls, emails, comments, and especially your prayers. They mean so much!!