This sentence has become the the thorn in my side the last few weeks. I have heard it so many times I might smack the person who says it to me next. What really bothers me about it is that I don't feel bad (and what exactly is the definition of bad? I don't feel good, but is that bad?)-that's the problem. I haven't felt bad since my kidneys started failing. I didn't even know they were failing and now I have 7% kidney function. Do you suppose I will feel bad at 5%? 3%? 0%? What exactly will it take before I feel bad? What is bad? How low can it go before its a death sentence? Ugh. All the unanswered questions certainly annoy.........
As of the last time I updated, I was waiting for my meeting with the dialysis nurse (which I had a week or so ago) and then another appointment with the doc (which was canceled due to bad weather) where I would inform her of the type of dialysis I was going to choose and the referral for placement of the access would be made. Because of some serious snow in my area, the doctor appointment didn't happen :(
Regardless, I have decided on my dialysis option. I am going to go with peritoneal dialysis. This is a lessor know type of dialysis; it can be done by me or a machine, in my home, every night. It also allows me more freedom for traveling because it can also be done manually. This type of dialysis also preserves what little kidney function I still have. I am of the opinion this will help me feel better during the day-when I am not doing dialysis-due to the continued elimination of toxins thru peeing. People who go on hemo-dialysis tend to loose this and I would guess this is part of why they still have issues with being tired-that and they are only getting their toxins out 3 days a week. There is a form of home hemo that patients can do these days, but for now, since I can't be sure when I will get my transplant, I want to save my veins. If I would be on dialysis for many years I may need to switch at a later date. Plus the "no needles" option appeals to me.
Another reason I like the PD is because I can go back to a much less restrictive diet......or more restrictive in the sense that I can go back to eating healthy. The strangest part of this kidney failure thing so far has been the diet. After my last round of blood work my doc determined I had to get on a low phosphorus, low potassium diet. The main problem with this is all healthy foods have way too much potassium and phosphorus in it........ugh, so I have been eating white bread, white rice, snack cakes and all this other highly processed crap that is making me mad to eat. I can eat very little that is good for me and I have to even watch my protein intake. I will be glad to get back to my almonds, wheat bread, sweet potatoes and MEAT.
I'm not excited that I will have about 6 inches of tube hanging out of me all the time (super sexy I'm sure) or that I will be full of water all day. In the end these seem like a small price to pay for the many advantages.
My attitude is deteriorating slightly I know. I feel like I am under constant stress these days. I'm afraid my potassium will shoot up and my heart will stop beating. (Yes, this could happen and I worry about it almost constantly.) The financial woes are stressing me out. The kids are stressing me out. Clients are stressing me out. I feel like I have very little respite from feeling under the gun. I know we all go often through life feeling like that, but when you couple it with the constant threat of death and the unknown time-line for all these things that are suppose to happen...........well it's just no fricken wonder my blood pressure is 200/200.
Finally, I am actually starting to feel somewhat bad on a pretty consistent basis. I try to not pay much attention to it, but I know how I feel when I feel good and this isn't it. I'm not miserable; I'm not that sick yet, but I don't feel good. I'm tired all the time-no matter how much I sleep. My right kidney has started to get shooting pains in it from time to time. I've had that off and on my whole life, but now it is happening with some regularity. I am also having something that reminds me of a panic attack, only it is happening at times when I am not panicking. I think it must be my blood pressure spiking or something but my heart races, I get short of breath, then I feel bad, kind of dizzy. It seems to only last a little while-maybe 15 or 20 minutes, but it is very unpleasant to be sleeping peacefully away and be woken up by one of these attacks. I don't like it. Also, my head hurts most of the time and I often feel slightly sick to my stomach. All this sounds like big fun doesn't it!!
So that's the update. I go to the doctor tomorrow. I should be getting my referral to get the dialysis port put in next week. That will mean I can start dialysis in three or four weeks after that. I hope that is soon enough. Surely the doctor knows what she is doing :)