Another nephrologist visit, another shot, still feeling tired all the time, and the doctor is actually talking possible timelines. The conversation went something like this:
“When will I quit feeling so crappy?”
“When you start dialysis.”
“Shit.”
“I knew you’d say that.”
At least he smiled when he said it. But he went on to tell me to see him in January, to keep coming back every two weeks for my shot, and that the nurses will be asking me how I feel. I’m to be honest with them, and I’m to contact the office if I get to feeling really bad. “You may make it to January before you have to start dialysis.”
Did you hear that crash? It was the sound of my plans being dashed to the ground. They haven’t stayed there though! I’m picking up the pieces of plans, hunting for the duct tape and chicken wire, and putting them back together in a new form!
January? Not if I have MY way! According to MY timeline, I don’t have time for dialysis until Spring Break at the earliest, and more likely won’t be able to work it in until summer. So there. I’m taking my shots, I’ve got a prescription for an iron supplement that will be filled Monday, and I’m working on getting the PhosLo and Bicitra down my gullet without tossing them right back up again. By God, I’m going to keep those darned needles away as long as I can!
No, I’m not going to consider a transplant or peritoneal dialysis, but I’m going to keep slogging away and trying to be as healthy as I can. I have too many things to do to be tied down right now. This morning I had an excited phone call from my 18 year old niece. She’s moving into her very first apartment and is so giddy that I almost couldn’t understand her part of the time. It was wonderful! This evening I got to talk with two precious granddaughters, to hold them over the phone and cuddle them a little bit, hear about how boring church can be and how frustrating an after-school program is. With all this going on, how can I take time to be ill?
My Beloved Husband is supporting me in all I do, he is my soulmate and the Love of My Life. I am so grateful that we are together in this journey. I have to keep fighting, for his sake if for no other reason. We have big plans for life together for many years!
So much for the doc’s timeline. I’m going to do my best to dash his plans and put mine in place instead. L’chaim!
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So your worried about dialysis? Well don’t be. I just think you should reconsider the Peritoneal dialysis. I was on it for 2 1/2 years and just recently (11/5/08) had my transplant. I did hemo dialysis first then switched to PD and I can say first hand that it is much healthier for your body and you will feel so much better then you do even now and when your on Hemo. The hemo dialysis to me was extremely depressing because you were there with very sickly people that come in by ambulance, noone wanted to talk, noone was happy. Yes you have to do PD every night but the pro’s outweight the cons. If I ever have to do this again I wouldn’t hesitate to do PD again. I even went on a cruise during my time on dialysis. Was great, carried my machine, they delivered my solution right to the room on my ship and I had the time of my life. I never let the PKD thing get me down I wouldn’t let it beat me. I was beating it. My mom passed away from this disease, my sister had a transplant in 2/06 and my niece was diagnosed at 14 yrs of age. Just reconsider your options I know if you really put your mind to it nothing will stop you from living a somewhat normal life. Dialysis was like a 2nd nature to me and actually seems weird I don’t have to do it any longer. At least think about it you will feel so much better then going on Hemo I promise you. Good luck in whatever you decide. I hope to get a response from you and keep up the blog~ it was great
Kathy, thanks for your uplifting comments. I’m trying to take this one day at a time, and your words are a great help.
Hello, Heather!
You don’t know me, but I know you. I have been corresponding with Glynn in HopeSquare.
Your attitude is interesting to me. Your timeline doesn’t allow for dialysis.
I am sincerely curious. What lets you know that your disease operates on your timeline? If you can tell me that, a heck of a lot of people might be interested. In fact, you could probably make a lot of money!
I am not being flippant! Before I went on dialysis, I was constantly nauseous, and could barely get through a day’s work. Iwas injecting myself with epo, and realyycouldn’t travel. My bones were so weak, that if I merely stubbed my toes, I would have a painful bone bruise that would last for weeks, making standing on the New York City subway extremely painful.
If you know how to avoid these kinds of problems, please publicize it!
BTW, when I went on dialysis, those problems went away.
Peace!
CoachRichie
Coach, I’m afraid I didn’t make myself clear in the post. I’m not claiming to have any power over this disease, only a certain level of control over my own feelings. I could sense myself sliding deeper and deeper into depression, and decided to try and stop the spiral by giving myself a good talking to.
I believe there is some value in the power of the mind, not that I am refusing to go on dialysis, but I know that attitude is part of the doctor’s evaluation of one’s need for ramping up the treatment. I don’t want my mental state to speak more loudly than my physical state, hence the claim that I “don’t have time for dialysis.”
Thank you for engaging in the conversation.
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