I’m back in Salt Lake, sitting in my favorite chair with my rainbow hued throw behind me and the radiator throwing off gentle heat, and I’m letting all the worries, hopes, and fears run through and over me like water through a sieve. The last couple weeks have been trying and traumatic, and I feel completely unprepared for my doctor’s appointment on Monday.
One of my worries is that I have too much scar tissue to do peritoneal dialysis, which means I would have to do hemodialysis until I get a kidney transplant. Peritoneal, or PD, is a type of dialysis in which a catheter is placed in my abdomen, and I fill up the cavity around my organs with dialysis solution. The solution then pulls the excess water and toxins out of my body through osmosis. I would get a machine that would run the exchanges at night while I slept. Hemodialysis entails the patient visiting a dialysis clinic three times a week where a machine cycles blood out of the body about a cup at a time, cleans it, and restores it. I’m sure everyone has different experiences, but for me hemodialysis is extremely rough, and I feel awful all the time. I tend to tolerate PD much better. Unfortunately, because I have had so many surgeries on my abdomen, the scar tissue may be too extensive to allow the PD catheter to be placed.
I am hoping that I might be able to forego the hemodialysis all together. Usually I go on it for just a couple of months while the PD catheter is healing. If my numbers are good enough, maybe my doctor will let me skip that step and just wait for the catheter to heal. I have no idea how realistic this suggestion is, but it makes me happy just to imagine the possibility that this particular bout with IGA might take place without ever having to get the hemo catheter put in my shoulder.
I think my greatest fear is that I’m not going to be able to be who I need to be to get through this successfully. I feel so inadequate. I wanted my house to be completely organized before I started this, so that my OCD wouldn’t torture me so much, but I don’t see how it’s going to happen. I wanted to be able to finish up all the projects hanging over my head so that I could just relax and concentrate on getting well, but I’m so tired. I want to be who everyone thinks I am and wants me to be, but I feel so overwhelmed sometimes. Lately I especially feel like I’ve been letting people down because I’ve been trying so hard to make everyone happy. I’m also cranky, irritable, weak, and hyper-emotional. I know that I am a strong woman, but sometimes I just want to crawl into a corner and weep. I want to cry because at times I feel so lonely, isolated by my illness, by the way it feels when your body is dying by degrees. I want to cry out of sheer exhaustion and weakness. I want to cry for the dreams I’ve had to put off, again, especially that little baby about whom it is becoming almost too painful to dream anymore.
There are other things worrying me, and other things I’m hoping for, but as I let myself sit and be free to think about the worst and best case scenarios, the above is what comes to me most strongly. At the end of all this stream of consciousness thought-flow, like the sieve, I’m feeling empty and yet still wet through. I’m not sure if these kinds of ponderings are really helpful or not, but I feel better for having looked my fears and hopes in the face, instead of letting them lurk half-seen at the corners of my mind. Once I am aware of what I truly want and what I honestly dread, I can come to terms with how I will feel if they come to pass or not. Regardless, I feel more at peace with what I want to talk to my doctor about on Monday, and what I will work harder on trying to accomplish in these last few days before starting dialysis.