More tests

Today I went for my second round of screening. The day began early with a sonogram. The technician explained that she was checking the arteries around my kidneys to make sure there were no lesions or anything. Basically to just make sure there was a good place to connect the new kidney to.

After that I waited three hours to speak to my transplant surgeon. Our meeting was pretty short, he told me that I was "pretty straight forward." Besides having kidneys that barely work, i was in pretty good shape. He said that he expected to have a good surgery, with no complications and an easy recovery. I asked him what I should expect in terms of recovery, since, as he explained, even though the donor would have a laparoscopic surgery, I would have about a four inch incision. He said that hopefully it would barely scar, that they wouldn't be using stitches or sutures, but something else. Don't remember now what it was, I'll have to remember to find out. But anyway, the point is that he said after a while, I would barely have a scar. He mentioned that after about four weeks, I'll be well enough to go back to work part time, and then after two months, I'll feel normal. Maybe, he said, I'll notice that I have a ton of energy at the start of the day, but barely any energy by days end. He said that three months was the magic time that I can expect that I will feel like new. Fingers crossed on that one.

We finally decided that my father would be the donor. Even though my mother was a five point match, my father matched both DR antigens, which apparently is the most important of the three pairs (A, B, and DR). My little brother drove my father into the city. I'm totally glad he was there. I found them at the transplant center, my father had spoken to the social worker, and the transplant coordinator, I presume. While I went to speak with first the dietician, and then later the social worker, he went to go have his EKG, echo, and chest x-ray done.

My dietician told me that it would be hard for her to determine what kind of diet I would have until I got out of surgery, and had my medications prescribed to me. Since certain medications have certain reactions to the body, for example, raises your blood-sugar, it would be important to adjust my diet according to the meds I would be taking. But that she was sure it would be high protein, and lots of liquids.

The social worker mentioned two things that I was glad to know. Following the transplant, I would have to travel in twice a week for six weeks to have my follow up visits and labs. I would need to have someone drive me to the city twice a week for six weeks, and likely, taking the train would be out of the question. Thats going to be tough, finding someone to commit to something like that. Then the other thing was that I would be on alot of medication, probably like ten different things, so I would have to figure out how to pay for all of that.

I had to hunt down the right people to get me my EKG, echo, and xray. They were totally ready to let me go home without having it done. But I went first for th ekg, which was a lot like a sonogram on my heart, with little nodes attached. The echo, was similar, too. They attached little nodes to my chest and my legs, and hooked it to a tiny machine. And it was done in seconds. The xray was very fast too, I just had to stand in front of a machine with a front and profile shot.

That was it, that was the end of my pre-transplant screening. I spoke briefly with my coordinator, and she asked if I would be able to have the surgery done on 2/7! I was like, no way, thats in like two weeks. I can't take off from work until after march in any case. Plus, I want to have at least one trip away, at LEAST to florida.

So we'll see what happens next.

The waiting game

I always say that things are really about perspective. What's there is what you choose to see, and you can always choose to see bad or you can choose to see good. For a person to lose his legs can mean the end of his life, but for someone else who has no legs, that just IS his life. I think slowly, I'm starting to learn to embrace the concept of not experiencing pregnancy and birth. And really, it's not the end of the world, its actually the catalyst for a new world for me and my husband and whoever our baby is thats waiting for us out there. It's not what I envisioned, but its time for me to have a new vision, and run toward that.

What's harder to get a hold on, is this whole thing with my kidneys. Its like medical limbo, where apparently I'm not sick enough to be eligible for transplant, but at the same time, I feel like I'm struggling everyday with fatigue and food. I'm sooo tired, just ALL the time. At any point I could just lay down and go to sleep. It's frustrating not having energy, and to always have to push myself just to get through a basic day. I feel like I sleep for 12 hours a day, and still am always tired. My other struggle is with food. The salt restrictions are a real challenge. I'm way too tired to cook every single day, but when I'm out, in NYC, at work and everyone is having lunch at the cafes around, I really can't. And then I get depressed because I'm hungry, and then I just go and buy some pasta or something, but then my ankles and feet swell up. I'm looking a my feet now, with the tops bulging out of my ballet flats. I have nice feet normally, really I do! I feel like a person who is battling obesity, even though I get daily comments about how skinny I am. When I eat, I feel guilty, and even when I try to flavor my food with vinegar or lemon juice, it doesn't always come out that great and then I feel depressed.

I'm at the point where I'm hoping for kidney failure! Is that bad, I just want something to happen so I can get out of this rut. Whoever heard of feeling guilty or depressed when you eat? I'm tired of being tired. Hopefully, I'll be able to angle my thoughts to a positive perspective, I just have to find it.

I did go to the doctor this week, and they are supposed to fax me my lab report. So I'm just waiting, waiting, waiting, to see what kind of downward progress I made. How crazy is that?