2 Weeks Left

In two weeks time my sister and I will be in recovery! I can't believe it so close.

Next week begins the final preparations at work; moving all of my current clients to others, packing up my desk, and final meetings. The surgery happened to fall during a complete restructure of our sales team. So when I return I will have a new manager, a new desk, new team mates, and I'll have to make up my yearly review that I missed while out. Good timing :) It will be interesting going into work not knowing where my stuff has been moved to. Oh well. I can really use the break from cubicle life, transplant seems just as good an excuse as any other.

I'm also starting to plan together foods for recovery. I am NOT a fan of hospital food and feel if I want to recover the best I can I should give my self the best chance. I just want to make sure that I have things prepared that won't add any complications. I don't believe I will be on much of any medications besides pain killers so it probably won't matter all that much, but I'd rather not taking any chances. From what my sister told me months ago the progression seems to go from clear liquids, to soft foods, to semi soft, and then normal foods. I know my sister will be much more restricted so I don't know if she will be able to have what I make, or that she would even want to, but I know I will make some apple sauce for us :)

Once while she was in the hospital I put a sign on the door requiring one apple sauce per admission. She liked to take her medication with it and a good bit of the doctors actually obliged. She had a nice stack next to her bed and it was entertaining for us. Apple sauce definitely needs to be on the menu :)

Date is Set

February 1st is the official kidney extraction!

I actually found out the date a few weeks ago but have been too lazy to write about it. It is so weird how there are so many emotions and so little at the same time. There are some very brief scary moments where I realize that I am having surgery. I am perfectly healthy, better in fact than most, and I am risking that health. These moments generally come on dramatically and last a few seconds. I also have moments of intense excitement. This should very well change my sister's life for the better. The rest of the time there is a sort of numbness. Not that I don't know what is going on but that it is what it is. My sister needs a kidney and I am the best candidate. This is the way things are so this is the logical next step. I am interested to see how my emotions will be afterwards. I know many people go through a sort of morning period for the lost organ, and I feel like this will probably be true for me. I don't expect it to last all that long but I would imagine it has to sink in sometime. Who knows, maybe it won't.

As far as the preparations, these have pretty much all been completed. Since the hospital is about 4-5 hours from my parents house and we have to stay near the hospital we have gotten an apartment for two months, or longer if needed. The surgery is on Friday so I'll fly in on Wednesday night for pre-opp on Thursday morning. My parents and sister will drive down on Wednesday too. The money budgeted for my flight through NLDAC was for a round trip ticket so I booked a flight home on February 20th. That's about a week and a half earlier than they would prefer but I'm flying with Southwest and there are no additional fees to change the date. My boyfriend's birthday is on the 21st and mine on the 23rd. He'll be staying in Kansas the entire time so I would like to be back with him so he doesn't have to spend it alone. He is staying behind so he can still work and we don't have to worry about finding someone to watch our dog and cat. Plus, with family and friends I think there might be a lot of people coming and going. I've also taken all of my time off work. I'm taking a week before the surgery to go on vacation and requested off the entire month of February. I put in the application for extended medical leave through the department of labor so I have up to 12 weeks if I need. It will all be unpaid, but I have been planning on that. They tell you to plan to be out of work 4-6 weeks baring there are no complications, but I have a desk job so I think it shouldn't be too bad.

So everything is finally set and there is nothing to do but wait. Three weeks and counting :)

The Importance of a Driver's License

My final appointment at Shand's was scheduled the Monday before Thanksgiving, which initially sounded like pretty awesome timing. Then I realized a last minute plane ticket around this time... not so much. If we flew out of the major airport 2 hours away we would be looking at just over $600, if we used the local airport it would be over $1000. So Friday after work I ran in the front door grabbed the pets and the boy and immediately jumped in the car and headed to Florida. A couples days and 24 driving hours later I realized I didn't have my drivers license. 

Luckily I have an incredible landlord who went to my apartment at 6am, got my license out of my coat pocket, and faxed a copy directly to the hospital. There was one scary moment but it was accepted for each appointment through out the day. I probably would have had a complete break down if it hadn't. 

The actual appointments themselves went really smoothly. The day started out with blood work and a urine sample. The latter was a slightly difficult since I was required to fast with no water. Next was the ultra sound which was really cool because I could recognize most of the organs on the screen. The abdominal CT scan with the dye however was downright weird. When the dye hits your system you feel this heat all the way from the top of your head down until you feel like you are peeing yourself. After that I had one-on-one meetings with my surgeon, nephrologist, coordinator, advocate, and psychologist. They basically talked about our particular procedure, possible complications, and recovery and making sure that I understood everything. The advocate was my favorite meeting. She is basically my defender and way out if I feel like I need one. I don't, but it's nice to know one is there. I also found out that I will have an incision at my belly button, not my bikini line. I hear this one is slightly harder to recover from, but we'll see. The day ended with an EKG and a chest X-ray. 

Two weeks later I got a call from my coordinator letting me know I was officially approved. Not only that my approval was one of the most straight forward approval they have had. I take that as a sign of things to come :) 

Now I just have to wait for dates. 

Approved for Travel

I am approved by the NLDAC! They are going to pay for my flights, gas, hotel stays, and meals. That is such a relief!

I will be sent an american express card which will be preloaded before each trip with the amount they budget. I was a little nervous when I saw they budget only $50 a night for hotels. Is that even possible?... My contact said that a lot of hotels will give special rates if they know I am a patient, if not they will add more if necessary. Phew.

My final appointment is now scheduled for November 19th in Gainesville Florida, which works perfectly. The NLDAC doesn't care if my flights line up to the appointment exactly. They just won't cover any expenses for additional days. So now my flight for Thanksgiving vacation is covered as my parents are on the way. I'll just have to make the 5 hour drive to the hospital while I'm home. Plus, my work vacation time does double duty now. With the surgery and my boyfriend coming back from deployment a week ago, paid time off is precious and very limited.

It's getting closer!

We're a Match!

I called the office on a Friday and found out that the results had come back, but my coordinator was out of the office so I should hear the following Monday. Hopefully.

Well, great...

But  I did get the call. My results were negative and my stomach dropped. However, it turns out a negative result means there was no interaction between our bloods. We're a match! I think they should have led with that :)

So I found out two weeks later than expected but who cares we're a match!

I promptly went over to I Heart Guts and ordered two of their life size plushy kidneys. One for Michelle and one for the donor. The package won't be opened until the donor has officially been picked though.

Right now we are waiting to hear from the NLDAC to see if my sister, me, or even both of us qualify for financial assistance to help pay travel expenses. It takes about 10-15 days to process and my income is low enough to qualify so I'm optimistic. Last minute plane tickets are going to be expensive as well an undetermined hotel stay for recovery. I don't know how soon I will be allowed to fly home afterwards. Medical bills, lack of wages, flights, and hotels can add up to a pretty sizable debt quickly so fingers crossed. 

Approved or denied, once I hear back the next step will be to fly to Florida for a full day of testing and meetings with psychologists. Two weeks after that we should have a decision. I'm hoping for a surgery date right after Thanksgiving, but I'll take it whenever :)

"You have a kidney in there?"

Still no news. I called the coordinator today and the cross matching is still pending.

However, I did want to tell my mailing story. It happened weeks ago when I had just gotten my blood taken for the cross matching. I was standing in line waiting for my turn. It went pretty much like this:

Woman in front of me: "That's an interesting package."
Me: "Yeah. I am trying to donate my kidney to my sister."
Woman: Oh my god, you have a kidney in there!?"
Me: "What?"

Haha. I couldn't have planned it better myself :)

Unknowns

I feel like there are so many unanswered questions. I have tried to look on line and research it but I found that there is not a lot of information on the donor besides "I donated, it went well, everyone's happy." I did find a a few blogs with videos. These were great but I wish there were more scenarios with different situation. Donors don't seem to be followed and studied on the long term. What information is out there, is a little sparse.

Here are some of my questions:

How does it feel before surgery? Obviously everyone will be different but it would be nice to read about.
How soon will my sister and I be able to see each other afterwards?
How much help will we need on a daily basis right afterwards? and for how long?
I have read once that donors often go through a sort of mourning for the lost organ. Is this common and if so how long does it last?
Do I meet with the psychologists post surgery?
I heard somewhere that the normal discharge is after 2 days, can it really be that short?
How soon after can I fly home?
Are there any changes to my daily life even small things that aren't necessarily a big deal but would still be nice to know?
I've read that women can safely have pregnancies after transplants but is it a little different because of this? Will I have to be monitored more? Are C-sections more likely? Could I have an at home birth if I wanted to?
Will health care be more difficult to find now or more expensive?
Once fully recovered are there any strenuous activities that are recommended you never do as a result of the transplant?

In the mean time, I keep myself occupied by reading about the recipients and autoimmune diseases in general.