I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: DADOTTER on February 10, 2008, 05:59:07 AM
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My name is Darline, and I'm a 57 year old retired elementary school teacher. I was born with only one kidney on the right side, which wasn't discovered until 1989, when I was diagnosed with Multiple Sclerosis, hospitalized, and developed a severe kidney infection as a result of the treatment. At that time, my kidney function was still 100%, but over time it slowly decreased until it dropped to 45% in 2001. I then started seeing my nephrologist, who treated me with the renal diet and meds in order to prolong my kidney function, but couldn't identify the cause of my kidney's decline. Around the same time, my neurologist discovered that I also had Antiphospholipid Antibody Syndrome, which basically causes clots in one's blood/arteries (I've already had four bypass surgeries and at least one to two angioplasties each year since), an atypical form of MS (I still walk well just using a cane), loss of kidney function (solved that mystery), and several other nasty little side effects (migraines and spontaneous miscarriages, i.e., no children).
This past June, my nephrologist suggested that I start to prepare myself for dialysis, as my GFR was then 22%. I entered my denial stage, certain that if I continued to faithfully follow my diet and take my meds, that I could prolong the life of my kidney...I refused to even consider that it would fail. On Thanksgiving night, I began to experience severe pain in my back, right in the area of my kidney. By 2:00 a.m., when I called my brother (I live alone) and an ambulance, I was on the floor in agony. After I arrived at the ER and had all sorts of tests done, I was admitted to the hospital. My nephrologist came into my room around 7:30 a.m. and told me that my kidney function had dropped to 13%, and that I no longer had any choice other than to have a catheter placed in my chest that morning, and to start dialysis that afternoon. I just remember thinking that this could not possibly be happening...kidney failure happened to other people, not to me! I was in the hospital for seven days, had three dialysis sessions, and started in-center hemo the day after I was discharged.
For the first month of treatments, I either vomited, cramped, or passed out almost every session. I don't become nauseous as much anymore, but I cramp all the time and still pass out periodically. The nurses don't understand why I cramp so badly, as I don't gain much fluid between sessions (I'm 5' tall and my dry weight is 42 - I usually come in at 42.3 to 42.5). I keep thinking that this is no way to exist, especially as when I get home from each treatment, I collapse with exhaustion and am unable to function. Sundays are the only days when I seem to have any energy to do anything. I hate my catheter with a passion, and have put off having the fistula surgery because I don't think I can deal with the pain of the needles every other day. Each day when I wake up, I'm sure that this has all been a bad dream and I'll be fine...I just can't get my mind wrapped around the fact that I need to be hooked up to a machine for the rest of my days on the planet, just to stay alive. Oh, I should mention that I did have a transplant evaluation in January, but of course, with the circulatory problems resulting from the APLA Syndrome, I was not considered to be a viable candidate, even though I had four potential living donors.
I've always been a very strong-willed individual, who has faced, dealt with, and overcome many other adverse situations in her lifetime. My parents and siblings are at a loss as to what to say to me, as they're not used to seeing me giving up and acting in such a defeated manner. But, I just can't seem to accept this latest setback in my life. I am seeing a psychiatrist to help me deal with my situation and am also taking prescribed antidepressants (which don't seem to be helping a whole lot).
I'm glad I found this site, as I know that I'm not alone in my situation and my feelings. It's a relief to have a place to come to vent and ask advice of others who have "been there and done that". I'm thanking all of you in advance for just listening and sharing any advice that you might feel will be of benefit to me!
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Welcome DADOTTER, good to have you aboard.
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Hi Darlene,
I am also from PA. Welcome! :welcomesign;
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Forgot to mention, I am from Western Pennsylvania as well. Again Welcome
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:welcomesign;
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Welcome Dadotter! Sounds like you've been through a whole lot. You've come to the right place -- whether you want to count your blessings or rail against the fates there is support for you here. And so much wisdom and experience.
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Hello DAdotter...I am from cleveland Ohio.... :welcomesign;.....Hang in there.Life is rough with dialysis.I go to a center.MWF for 31/2 hours.I have a awful time with my fluids.My phosphorous is elevated.This sucks but its our lifeline..Stay in touch.... :cuddle;
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:waving; Hi Darline,
Thank you for telling your story. I hope you meet lots of nice folks here and find useful information in the posts.
You've been through a great deal! I hope the dialysis levels out. Keep on top of your dry weight. If you're keeping food down now your weight might go up a little - don't let them take off too much fluid in response! My daughter had similar problems so we always had to insist that they reset the default percentage on the machine to manual and only remove the minimum fluid. It helped a lot!
Welcome to our IHD family!
okarol/moderator
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:waving; I'm from San Antonio, Texas. I'm haven't started dialysis yet and am scared of the needles as well! I had a fistula placed Oct 31st. Check in often! And Welcome to IHD!!!
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Dadotter, do you HAVE to be on hemodialysis? can you do peritoneal instead? I so hope a resolution can be made for you. SOMETHING has to be
done!!!
Please do post as often as possible, everyone is welcome! :welcomesign; :welcomesign;
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Welcome Dareline to IHD.
It's great to have you here. It is much easier to explain how you feel here, because everyone here understands. Some of us met each-other in Las Vegas and it was so nice being with a group of like minded people, it made the trip so much more enjoyable because we didn't have to explain the details of dialysis or ESRD.
Hope to see you in the forums and/or chat room.
Sluff/ Admin
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welcome aboard :thumbup;
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I had the back pain, too and went into Urgent Care in tears. They took one look at me and sent me to ER in an ambulance. Emergency dialysis is rough and it takes awhile to get use to everything. I bet in a few weeks/ months things will calm down and you will start to feel a little better. Remember you had a lot of toxin build up in your blood.
Anyway, welcome to the site. I teach 6th grade so if you ever get the need to talk shop let me know.
kitkatz,moderator
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Welcome Dadotter!
The people here are like little angles and will surely try and guide you through the rough spots.
( I was born in PA)
Joannie
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:welcomesign; :welcomesign;
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:welcomesign; from Texas!!!
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Welcome to our community, sister! You are my sister three times - renal failure, 58, school teacher!!!! We have SO much in common. i am so glad that you found us. This is the place for anyone with renal failure who can use a computer! this place was a godsend to me, as I found it just the month before I started dialysis and I am so grateful for the preparation I was given. Since then, Sept 2005, this site has become a REAL family. i have been on many forums but i have yet to meet one where there is such a caring and sharing family spirit. So please take advantage of all this site has to offer. Read and read, but also post and post. We like to know what is going on with our family members. :grouphug;
Bajanne, Moderator
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Hello and :welcomesign;
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:welcomesign; You have come to the right place. The people here are wonderful and ready to help you any way they can. Your story is amazing and shows what a strong woman you are. I look forward to hearing more from you. There is always someone here to help with answers or just a shoulder to lean on. I don't know where I would be mentally or emotionally if I didn't have IHD. :cuddle;
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Hello and :welcomesign;
Got any snow over your way? Just curious - I live in VT and it seems like it just won't stop snowing this year.
I hope they figure out the issues with the dialysis. WHEW - you have been through the wringer and back.
Take care and hang in there.
Sandyb
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:welcomesign;
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Welcome to the IHD Family!
I hope you find lots of useful, helpful info. here.
You'll find lots of support here and people who understand and really care.
I'm from Ohio, as you can tell by my name.
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Welcome from Ohio. It's amazing how alike our stories are, yet how different.......It is hard for most people who have always felt so strong and in control of their lives to suddenly start losing it. Yet somehow we manage to do what we have to, and you will as well. I'd think about giving that fistula a try. Mine has given me a lot of problems but is slowly maturing, and I understand it's the best and safest method for HD. I'm also terrified of the needles, but I use the numbing cream and don't watch. I'm still hoping for a transplant but my living donors were all positive crossmatches. IHD is just the greatest site for those dealing with renal disease. I have learned so much here. If only I'd found it 5 years earlier. Take care and wish the best for you.
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:welcomesign; Darline.
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:welcomesign; I am from Pennsylvania too near Philadelphia