I did something so totally foolish this morning. I refused my infusion, the nurse became so rude and even hung up on my husband when he tried to explain my concerns. It was like she did not care other then I had wasted her time, never mind it is my life and my melt down. She even told him I would be forced to pay for her wasted time and then slammed the phone down in his ear. I know I will probably pay for the visit and my insurance will not cover it, I accept that. But what hurts is no one wanted to take the time to hear me out, all I got is you wasted our time.
I love my doctor, he is wonderful but I could not get hold of him to talk about the last time we did the infusion and my concerns for the kidneys. All they kept saying is we have to wait and see or he will contact you. Well last night I was so stressed and so upset I could not sleep, none of my questions were answered to what was bothering me. Like which drug is hurting my kidneys, we know one is because they keep bouncing around and the infusion and methrotexate are my only new drugs since the kidneys went bad in the first place.
I have fears of my kidneys failing again, I have fears of having to replace my kidneys and not having any one close to even a match on me. I know I should be looking for my natural family but I just can not bring myself to do it simply because they know I exist and they chose not to know me. My granddaughter is my only match and I would never in a million years ask her for her kidney with all her health issues, it would be too dangerous for her.
So I stayed up all night battling with myself and the bottom line is I freaked and refused to have it done. I honestly tried to call but the answering service would not take a message to cancel an appointment, they told me to call when the office opened at 9 which did me no good I had to be there by 8:15. So when we got hold of them the nurse kicked into rude and would not even let anyone explain,and she slammed the phone down.
Now I am left with this feeling that all I am to them is insurance claim, money. That my feelings and worries do not matter as long as they can collect on my appointments. I just needed someone to listen to my concerns was that honestly asking too much? Maybe I was wrong, I do not know anymore. I am so confused and hurt right now, I still have not slept and can not seem to stop crying. I keep thinking maybe I made a mistake, and then I hear my inner voice say after the second infusion last June I got so sick and that my kidneys took a nose dive again, and I think about all the canceling they did because of bad numbers in my blood work. Which now makes me feel like they were actually canceling till they got the approval from Genetec for them to foot the bill. Because once Genetec said yes suddenly the infusions were back on. Am I over reacting, am I a basket case.
Right now I know I am a basket case, I am just so tired of being sick and worrying about my kidneys. Just once I would like someone to say hey we are worried about your concerns also. I have tried to stay up about this but in the wee hours of the morning and with all I have been dealing with in my life it finally hit me and I melted down, I think I still am. And no the doctor has not contacted me yet either.
I love my doctor, he is wonderful but I could not get hold of him to talk about the last time we did the infusion and my concerns for the kidneys. All they kept saying is we have to wait and see or he will contact you. Well last night I was so stressed and so upset I could not sleep, none of my questions were answered to what was bothering me. Like which drug is hurting my kidneys, we know one is because they keep bouncing around and the infusion and methrotexate are my only new drugs since the kidneys went bad in the first place.
I have fears of my kidneys failing again, I have fears of having to replace my kidneys and not having any one close to even a match on me. I know I should be looking for my natural family but I just can not bring myself to do it simply because they know I exist and they chose not to know me. My granddaughter is my only match and I would never in a million years ask her for her kidney with all her health issues, it would be too dangerous for her.
So I stayed up all night battling with myself and the bottom line is I freaked and refused to have it done. I honestly tried to call but the answering service would not take a message to cancel an appointment, they told me to call when the office opened at 9 which did me no good I had to be there by 8:15. So when we got hold of them the nurse kicked into rude and would not even let anyone explain,and she slammed the phone down.
Now I am left with this feeling that all I am to them is insurance claim, money. That my feelings and worries do not matter as long as they can collect on my appointments. I just needed someone to listen to my concerns was that honestly asking too much? Maybe I was wrong, I do not know anymore. I am so confused and hurt right now, I still have not slept and can not seem to stop crying. I keep thinking maybe I made a mistake, and then I hear my inner voice say after the second infusion last June I got so sick and that my kidneys took a nose dive again, and I think about all the canceling they did because of bad numbers in my blood work. Which now makes me feel like they were actually canceling till they got the approval from Genetec for them to foot the bill. Because once Genetec said yes suddenly the infusions were back on. Am I over reacting, am I a basket case.
Right now I know I am a basket case, I am just so tired of being sick and worrying about my kidneys. Just once I would like someone to say hey we are worried about your concerns also. I have tried to stay up about this but in the wee hours of the morning and with all I have been dealing with in my life it finally hit me and I melted down, I think I still am. And no the doctor has not contacted me yet either.