Hello from IL!

[CebuShan]

  Hi everyone. I am a 51 year old female living in IL. I am originally from CA & I miss it like crazy. Especially now. I was fine until the summer of '08. My husband & I regularly give blood & this time my blood pressure was 180/100. Way too high to give. I didn't think much of it, it had been a stressful day. The blood center said I really should go to see my Dr. So I made an appointment. I love my family Dr. She speaks very plain so you understand. She said that since I had no contributing factors, she believed that the HBP was age related. So I was put on medication (I hate taking meds!) after she explained that controlling my diet would help but not keep my BP completely down. Everything was going great until January '09. I woke up one morning with half my tongue swollen! I thought I had just bitten it in my sleep but couldn't find a "sore spot". I was just going to tough it out but my husband insisted that I call the ER. I did under protest. They wanted me to come in. Did I mention that I also hate going to the ER? They took me in right away and the Dr. listened to me talk & said he thought I was having an allergic reaction to the medication that I was on. (If I had known that I could have stayed home. After all I have an epi-pen!) So he called my family Dr. and they agreed on a new medication to try. Didn't like it. made me feel lightheaded and very hard to concentrate. Changed medication again. This one seemed to be working until one night in early May. I didn't feel right. It felt like my BP was rising. I got my BP monitor out and took my BP. It was 215/150! I was scared. I called my Dr. (11:00 at night) She was out of town but said she would get the Dr. covering for her to call me back. He did about 5 minutes later. I explained my irrational fear of returning to the ER so he suggested taking another dose of my BP medication and call him back in an hour to see if it worked. I did what he suggested and took my BP an hour later and it had dropped...210/150. He told me to come in but that I shouldn't drive, I should have someone bring me or call an ambulance. My husband was sleeping (I hadn't woken him up in case it was nothing) I woke him up, filled him in on what was going on. He got dressed and off we went.The whole time I was in the ER, they couldn't get my BP stable. It was up & down. They finally decided to keep me until they could get it stabilized. Did I mention, too, that I hate being cooped up in a hospital room? I was there almost a week (6 days) before they got it under control. They did every test they could think of. Finally one morning this very nice Dr. came in and explained that he was a nephrologist. My respone was, "But I'm not dead!" (I was confusing nephrology with necrophilia! Both of my Dr's. still laugh over that!) He told me that I only had 20 per cent function in 1 kidney, the other was not functioning at all. And that I was eventually going to need a transplant. I don't think it sunk in how serious it was because all I could think of was "Would I still be able to make my trip to Finland at the end of the month?" He wasn't thrilled about me going but when my Family Dr. came to see me, (she cut her vacation short just to come check on me!) I told her that every thing was paid for already and she thought it would be okay IF I followed her instructions completely. ( That was a bit of a joke because she knows that I am a bit OCD about that. I'll explain that later.) I think what really got her to agree was that the friend I was going to visit is a nurse. So after I got back, (I had a great time!) I went to see the nephrologist (July '09). He sat me down & showed me the blood test numbers AND explained what they meant until they finally started to make sense. He explained that I was borderline on needing dialysis and it would be my choice if I wanted to start. I told him absolutely not! I was not ready to be stuck in a chair especially during the Summer, my favorite time of the year! So I did my usual and toughed it out. I was dropping weight like crazy but I also needed to. By Thanksgiving, for the first time in 25 years, I did not cook. I really didn't feel like making much of a celebration & suggested that we just go out to a restaurant. No. my husband decided that he wanted to try making dinner. I helped him shop and he did make a wonderful Thanksgiving dinner. Any way, everything was going pretty much normal except that I was not eating and when I got home from work, I felt like I would just drop. I was also starting to get cramps in my feet. And ITCHING!! Since I couldn't imagine how either of those had anything to do with the kidneys, I didn't mention it. I was still seeing the nephrologist every month for blood workand my numbers were slowly getting to the point where the inevitable was going to happen. Something you have to understand about me, I'm a very independent, stubborn person. I don't like to be forced to do anything or on someone else's timetable. (That's why I run my own business) So before I got to the point where I would be forced to go on dialysis, I told the Dr. that it was time. He set me up for surgery to have a catheter put in the next week. (He wanted to do it the next DAY but I said that was too soon) I had time to go shopping. I bought a new nightgown, robe & slippers. I refuse to wear a hospital gown except when absolutely necessary. So, on April 28, 2010 I had surgery and later that day had my first dialysis treatment. Unlike some people, there was no "honeymoon" stage for me. They were trying to pull excess fluid off that I didn't have! All I did was cramp until they finally stopped pulling fluid. The next 2 days were the same, no excess fluid to pull! Now, my kidneys work as far as making urine. They do not filter. I know strange but that is me. I never get the "normal" side-effects, I get the 1-in-a-milliion rare ones. It wasn't until September that I agreed to get a fistula. By November it hadn't grown enough to use so they went in to do an angioplasty on it. December, the same thing. I was beginning to think it wasn't worth it but I kept reminding myself Get rid of the catheter, go swimming next summer. Finally in Feb 2011 they felt it was big enough to try it. I am a big coward when it comes to needles (I can give a shot but I hate getting them!) I got my emla cream followed the directions and let them try. They finally got it without infiltrating. Shortly after I got started dialyzing, my arm started to really hurt. It kept on and didn't get any better. I was crying (I hate to cry!)and begging them to stop the treatment. They thought it was just "first time jitters" and ignored me. I cried the whole 4 hours. By the time I was done, I was not only in pain...I was angry and I let them know it! I stormed out and didn't return for a week. My arm in the meantime had swollen so bad, it looked like a mortadella sausage! Plus I had a nasty rash. I showed the Dr. and told him I would rather die than go through that again. Turns out, I'm allergic to the emla cream! So now I use hydrochloride spray. I did go back to that center after I got public apologies from everyone that had been working that day. I'd like to say that everything has run smoothly with my fistula since then but it hasn't. They could not get good pressures on me until I went to a specialty clinic that found out that my fistula is reversed! There was one tech that could cannulate me the first time, every time. Nobody else could. I started asking her questions so I could tell the other techs. It's deeper than it feels; it also does not go in the direction that it feels, it goes straight up. Also, unless they get a good, steady flash, it's not in. Now that they listen to me, more of them can cannulate me. Before, it was several minutes of them digging and maybe hitting the fistula. I respect anyone who can do it themself but I just can't. I can't watch them slide the needle in, after it's in, it's okay.
I did say that I would explain about me being OCD about following Dr's. orders. I watched helplessly while my grandparents basically killed themselves by not following what the Dr. said. No matter how much I dislike it, I don't vary without permission!! I just have to think of my beloved grandparents.
Well, I guess that is enough of my life story that anyone would want to hear!! Just think of me the next time you hear of someone having a weird reaction to some drug or treatment, it's probably me!

[lmunchkin]

 Welcome Cebu!  You have really been through alot!  But you are in the right place when it comes to dialysis.  People here can support you in any way you need!  Everyone here has gone or is going through what you are now!  Plenty of support and knowledge here! This site has been a Godsend to me and many others!

Post and post often, God Bless

lmunchkin

[MooseMom]

Hi there!  Actually, many people who start dialysis still make urine, so your case is by no means weird.  And it's GREAT that you DO still make urine, it's just that the toxins are not being filtered out by your kidneys.  So, you are actually pretty lucky in that regard.

It's good that you follow your doctor's orders, be it because of OCD or not!  But I would like to say one thing about this...you seem to be a smart gal, and when you are dealing with a chronic illness, it's not enough to just follow orders.  You and your doc and everyone else connected should work as a team.  A good doctor is going to rely on YOU to give him the information he needs to tailor your treatments to YOUR needs.  Keep an eye on your lab results.  Keep an eye on your bp, etc while dialyzing.  Keep an eye on infection protocols that the clinic staff MUST follow.  But you already know all this because it was really YOU who instructed THEM how to cannulate YOUR fistula.

Since you are "stubborn and independent" and don't like living by someone else's timetable, do you think that in the future, you might be interested in doing dialysis at home?  It would require you to learn to self-cannulate, but most people say that sticking themselves is actually less painful and scary because they're concentrating so much!  You could establish buttonholes and end up using blunt needles...sort of like having pierced ears.  It may be something for you to think about;  you could do your dialysis even at night while you sleep!

Anyway, I'm glad you've found this site, and I hope we can be of help and support.

[jbeany]

 

I love detailed intros!  Thanks for telling us all about you, and welcome to our community!

jbeany, Moderator

[Ang]

 

nice intro,  hope all is running a smoother at the moment

[monrein]

Excellent intro...but I really wish all of this was not happening to you.     to IHD.

[CebuShan]

Thanks everyone! @Moosemom, I know what you mean about working as a team. My nephrologist and my family Dr. both work together especially about medication. I make sure that all test results get sent to both drs. When I get my monthly sheet with my numbers on it, I stop by my family dr. on the way home so she can make a copy of it. She's been my dr. for almost 20 years now so she knows me best. Whenever the clinic offers me something (pneumonia shot, hepatitis shots, etc.) I always tell them that I have to check with my family dr. first. She always explains the pros & cons as pertains to ME not generic what's normal for everybody else. I want them all to know who is involved so far and ask them to call & talk to the other drs.
This is the first time that I've ever had anything serious like this. I never knew anyone before that had anything this serious so it's all new to me. But I keep learning as I go along. I didn't say too much at the beginning because of that and my generation was raised that drs. were one step below God. I sure know better now! I question everything (it was a friend who is a dr. that taught me that)
Any way, thanks again. It's great knowing that there is someone out there that understands and not just preconceived notions.

[lmunchkin]

Cebu, you want to keep posting here when ever you have a question about something.  These people here know just about as much as any doctor!  They have done their research when it comes to any kind of kidney disease, and mostly because of themselves!  Not only are they up on it, but they have been so supportive!  Good group here, and I would encourage you to read & post on IHD?

Again welcome,

lmunchkin

 

[Rerun]

Hi CebuSham.  Pretty kitty.  You have had a few kinks to say the least.  I'm glad they are listening to you.  I hope you come here often to read and post.  I'm glad you found us.

Rerun, Moderator      

[Poppylicious]

  Cebu!  Love your detailed intro (and your pussy-cat), but I'm sorry for the circumstances that brought you here.

[willowtreewren]

Good golly, Molly! That is one great introduction (though the situation wasn't great!)

Welcome! 

I'm glad you found IHD for all its support and information!

Aleta

[alewis328]

Hello!
I enjoyed your intro. You seem to be laid back with a great sense of humor!  I am also a newbie. As is today was my first post. I am having some technical issues finishing my intro but eventually it will be complete. I'm sorry you are facing these issues but I love the fact that you still took your trip. Determination is a wondeful thing