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RightNation.US: The WORST month of my Life--with a capital "L"! - RightNation.US

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Well. well. well. Everything was just spiffy when I last wrote--my kidneys were pretty shot, but still worked a little, I still felt fine (it's amazing what you can get used to), and most people, that I've worked with for 23 years, didn't even know anything was wrong!

Well, that changed on Aug. 20th. That was a Friday. On that Monday, I really didn't feel well so I stayed home from work, and for me that means there is some physical reason (urping, etc.) that I can't go. But I came back the rest of the week. But Friday night, I barely made it home from work and I went to bed. Really, I was nauseated all week. I've never felt like this in my life. Finally, it was so bad that I called 911 Friday night and sent to the ER. I explained my history and they took all the blood tests that they needed, but they didn't show anything (yet). They said maybe it was this virus that was going around here. Monday morning, I stayed home, but sent my husband to work. He'd asked me if I wanted to go to the ER again. I said no, that I just want to sleep it off.

As soon as the door slammed, I thought,"That was stupid. I need to go to the ER!" Luckily, he'd surrounded the bed with phones, and cells, and the laptop, so I called 911.

And that was aggravating! The gal who answered said, "911. Can I help you?" Fine. But I was so weak and sick I could barely talk and only in short breaths. "This is...Cherylyn K...I need..." And she would interrupt me! "What are you talking about? Are you having an emergency?" I started again,"I am...sick. I need an ambu...." "Repeat that! Is this an emergency?" I finally gathered up ALL my strength and yelled (or thought I did), "Listen to me! Quit interrupting me! I'm sick and I know you have my address! Get somebody over here!" So finally she verified my address and the EMT's were here in just a minute because they are two blocks away. But my dog was going nuts. I'm on the floor, which isn't typical, I'm screaming into the phone, what's up with that? Then there was this pounding on the door and loud voices outside. Poor Riley! They said they didn't want to come in with a wild dog loose. Luckily, I had installed glass-paneled doors on our living room so I shoved Riley in there and trapped him in. I told the EMT's it was OK, and they came in and scraped me up off the ground onto a gurney and took me away. Poor Riley! As far as he knew, three giant guys broke into our house, grabbed me, locked him up and took me away! But it was all good, we told him later.

Anyway, the upshot of all this was that that dye that they used for the heart stent had indeed knocked my kidneys out--it just took a week instead of a day. So that answers the question about whether I'll need dialysis. I hadn't eaten or drunk for a week (!) before, so I was really dehydrated. Hey, this is all new to me--I thought it was like having the flu, off your feed a little bit. Then I had to have an emergency dialysis port put into my shoulder. It's basically where they put a spigot on an artery and on a vein in order to give you dialysis. It's sort of an open wound that they change the dressing on after every dialysis. But I never really see it (or look at it), so it's OK. Hey, I have to have it.

I am learning A LOT about "The World of Dialysis" that I had never (and I think most people never) considered before. But everyone is very friendly and good at it and efficient. The worst part about this whole thing is the great difficulty in showering! It's always a two-person operation--at least to make it far easier--and I still have to be very careful. I had my surgery this Monday to install the port for the peritoneal dialysis that I'm going to switch to in about a month, after I heal up. That was a pretty miserable day. Let me tell you, the first thing I thought afterwards was, anybody who voluntarily gets a tummy-tuck is insane. They had to pierce the abdominal wall and ANY use of stomach muscles hurt like heck. Coughing was the worst! So now I have two areas that I have to protect to take a shower. Ugh!

The part that is really worrying me is the fatigue I feel. I am so exhausted all the time. Although I get to listen to John Gibson, then Laura Ingraham and the Rush while I dialyse! But the gals at the center say that that is normal, that my body got used to having to work with all the poison in it, and now it's having to get used to working without all the poison in it. They say in a few weeks I should be feeling really good, as far as dialysis goes. And when I switch over to the PD (peritoneal dialysis), I will be doing it myself, at home, everyday, so I should feel really good. There's a guy who runs marathons who is on PD, so maybe.

And I have been told that ALL of this, they are considering TEMPORARY, given that I'm going for a transplant. Right now, frankly, that one of the things that keeps me "up" a little. I am not thinking beyond the transplant, because there is no point. But, believe me, I am glad this month is over, and it turned out OK.
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11 Comments On This Entry

Oh man, I can sympathize with you. My roommate in Atlanta was dying from AIDS. I had to take him to his dialysis twice a week and the way it made him feel afterwards was so much better. Hang in there. You can make it. You MUST think past the transplant, to the life you'll have then.
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Thanks, that's actually hopeful!
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Wow, what a horrible thing to go through! Hope you feel better soon. :welldone:
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I hope the dialysis starts making you feel better soon. :welldone:
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You all will be the first (well, maybe the second!) to know!
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I had a portacath during chemotherapy and it healed up and looks fine now. (So yours will too, after you get your new kidneys.) I loved it. Get some EMLA cream--that deadens the pain when they have to "plug you in."

My doctors didn't tell me about EMLA cream. A woman who had once had a portacath did. And let me say, if I had to do it again I'd want a portacath AND I'd use the cream.

Hopefully you'll do fine this "worst week' will just be a memory.
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Check--EMLA cream!
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Offering PRAYERS of comfort!!!!!! Your strength is an inspiration!

:welldone:
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Sending prayers your way, CherylnK! :welldone: I'm happy you're okay and hope you're feeling better. :)

You've gone through much and still are, but you've proven yourself to be a strong lady, so keep your chin up and try to stay positive. :)

Blessings!

AP

:)
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CherylnK, I just now saw this. I'm so sorry for all you are having to go through. You are definitely in my prayers and I'm praying you get a transplant soon and it works perfectly.

I'm not sure if you need it or not but wanted to mention it just in case that you qualify for Medicare now that you've started dialysis. If you start your home dialysis within 3 months of your first date of dialysis, you are entitled to Medicare on the first day of the month in which you first date of dialysis occurred. If you do not start home dialysis until after those first 3 months, then you qualify for Medicare on the first day of the 4th month.

Also, if you have other insurance other than individual insurance as opposed to group insurance through an employer or COBRA, Medicare would pay secondary to your other insurance for the first 30 months after your Medicare entitlement date. Though of course, Medicare is not as good at paying for your medical bills as most other insurance so I would advise keeping your other insurance as long as you can.

Sorry for the tangent. I just wanted to make you aware of your options.

I've heard people say that when they get a transplant that they feel better than they've felt in a long time including the time period before you started dialysis. I pray it will be the same for you. :)
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Thanks, Ilja! Actually, the dialysis center has a social worker (i.e., insurance person) tht is going to talk tome about just those issues. Aparently, they want you to go on Medicare for three years, no matter what your age (even if you're 17 or something) because if you haven't gone on Medicare before, then when you're really retirement age, Medicare won't pay for the medication that you've been using! It's all very complicated! I'm sure I'll find out even more so.
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