Transplant progress

I apologize for not posting for awhile, but there has not really been any news until recently.  A few months ago, I had issues with my insurance company and decided to switch to Medigap BCBS. After a million hours on the phone (mostly dealing with changing, then ending my Obamacare plan), I was able to activate my  Medigap coverage.  After that I had to wait for Duke University Hospital to re-review my referral for transplant and find an appointment time for me.

In the meantime, I also talked to University of MD hospital about transplant review. In the next two weeks, I will be poked, prodded and quizzed by a team of doctors at each of the two hospitals.  My appointment at Duke is July 11th, and the one in MD is on July 21st. Each of these takes an entire day and all that I know at this point is that I need to bring someone with me so I can demonstrate I have support (and a caregiver after the transplant surgery), and that I need to be prepared to be at the hospital all day.  I think they do both physical and psychological tests to make sure transplant is the best option.  This is also when I will get information about how to enlist altruistic donors.

I'm waiting on the packets which should come through the mail any day. I'm assuming there will be endless paperwork involved.  I feel like everything is taking forever, but my doctor said that's how things go when you are on dialysis- everything moves really slowly.  Even if I receive a kidney from a family member, the whole process is likely to take more than a year from the initial appointment for review.  In fact, It will take at least 60 days after each appointment for me to get onto any lists. 

I rarely have news, and it's hard for people to understand that this process takes forever.  I will do my best to post updates here when there is news, but in the meantime, I am settling into the dialysis lifestyle.  It's going to be a long ride. 

I generally feel healthy, although maybe a little more tired than before my kidneys stopped working, but this has not kept me from staying active.  The main frustration is food- I miss ice cream, pizza, salt and vinegar chips, and all of the amazing things that can be done with cheese.  Sometimes it's a pain to schedule my life around the 9 hours I have to hook up to my machine each night, but the bright side to that is that I always get my rest and it helps to remind me to slow down when I starts to over-schedule myself. 

I'm so glad that I am on PD because I get to travel/go away for short weekend trips, and I am planning my first plane ride with my equipment for next month- a hiking trip in Colorado with Eric and my parents.  I arranged ahead of time to have all of my liquids sent to the places we are staying, and I will bring my machine and other supplies with me on the plane.  Apparently, medical supplies are allowed to be carried on- we'll see how fun it is to lug that machine through the airport.

At this point I have still not attempted swimming.  Next week we are going to the beach though, so I am getting a waterproof tegiderm dressing to keep my port/tube dry. I'm feeling a little apprehensive about the whole bathing suit situation though.  I feel like I am too young to wear a one piece bathing suit, but in a bikini, it will be obvious that there is a tube sticking out of my belly. I read an article about a model who posed with her ostomy bag and, it sounds lame, but it made me feel a little better.  http://www.people.com/article/bethany-townsend-bikini-colostomy-bag-crohns-disease-inspiring-viral
When it was posted on facebook a bunch of other people responded with photos of themselves with their ostomy bags.  Even though I don't have an ostomy bag, I have a similar situation, and I feel like these people are being really brave by showing the world that their illness is nothing to hide.  I'm not sure if I'm ready for that just yet, but I think I will be soon.  I am thinking of maybe even 'outing' myself on facebook because right now only my family, coworkers, and a few of my closest friends know about what is going on. I don't want the extra attention though- plus, I feel like I talk about 'how I'm feeling' all the time as it is.

Speaking of- I think that's about enough of that for now. I will try my best to post after the first appointment to share what it was like/what hoops I get to jump through next (flaming ones?)