Monday, January 21, 2013
Well, the renal guy has decided to put me on comfort care only now. I can't fight the anasarca without the endo finding a way to balance the hormones enough to help me keep my salt levels up. I have heard two birthdays in a row that I would not make it to the next, but for some reason I believe them this time. Something is going to have to change drastically in order for me to survive. Even still, I find myself unable to stop fighting. God give me the strength to keep going.
Tuesday, January 15, 2013
Well, the other half of my adrenals crashed so now I am on both steroids, I had to start T3 for my thyroid which is making none and converting none of the T4, started on several insulins because I am now considered a type 1. Apparently my pancreas went on vacation and forgot to come back. I am still blown up like a balloon but starting to drop. We shall see. If I get below 300 I will know the T3 is actually working and nothing else is interfering with it. The salt problem was due to the other half of my adrenals crashing, so hopefully with the florinef that will also improve before it takes out the rest of my kidneys.
I am not allowed to do any exercise except sitting aerobics, so PT suggested I get one of those cycle things you put your feet in from a chair and put it on a table and use it with my hands instead. WOW. It works. And the best part is I don't have to worry about passing out. The adrenals are so unstable right now that I pass out after a few minutes standing because my blood pressure takes a dive. Who knew this could get so complicated.
My cpap mask is driving me nuts so it is time to look at a different style. I am used to wearing it so with the right one I might actually sleep. Wouldn't that be novel. Well, that is my update. I am hoping I can focus a little now and at least level out a few problems. Hope everyone else is hanging in there. Oh yea, the ENT put tubes in my ears and I feel like a new woman, at least at ear level. LOL! I love the fact that they actually clear now and don't constantly pop and squish.
Monday, November 26, 2012
Well, I am almost to stage 4 now on my renal failure scale. UGH. It doesn't matter what we do. I will not do dialysis as I am not a candidate for transplant due to my disease, so if I hit stage 5 it wil be bye bye. This is starting to scare my husband, that and the fact that the fluid builds so fast I just can't breathe, but according to labs, I am not in heart failure. According to common sense, I am. That is my cardiologist speaking. Most don't know how to deal with this when it is lack of hormones causing everything. In addition, my husbands oldest sister and youngest sister are both dying. One is 78 and the other 54. It just seems so wrong. I am the one who really should have been a goner a long time ago. I don't understand this at all.
My faith tells me it is not up to me to know the Lord's purpose, but usually it makes some sense. I am finally feeling a little scared for my husband. I am ok with this, but seeing him suffer is making me feel so bad. I know it shouldn't, but it is. I hope i can work through this.
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