intro bleija

[bleija]

I found out I had kidney failure in march of 2009. At the time, I was 19, I had my own place, i owned my, i was going to school full time, and i was working a highly physically demanding job. life was great. One night when i was working, my thumb swelled up really huge like 3 times the normal size, it hurt to touch it and bending it was out of the question. I had what i thought was good insurance, so i thought eh well let me make sure i ddnt break it, just in case fore workers comp purposes and such. they xrayed my hand, but when they took my blood pressure, i never heard another thing about my thuimb from there on out. my blood pressure was 190/ 140 in triage. By the time i got a bed it was breaking 200/160. they kept giving me iv blood pressure meds, but they werent affecting anything. they parked my stretcher in front of the nurses station pretty much waiting for me to stroke. My pressure got up to 220/190. they rtied everything including nitros. i spent a night in the ICU. thats where thery told me that my creatinine levels were full blown stage 5 kidney failure. My nephrologist told me that i would eventually need to go on dialysis. at this time and for the next couple muonths i was just numb. i was just going with the flow. taking the pill they tole me to not a clue what they were for. may of 2009 the doctor told me that it was time to make a decision. I chose PD because i just ddnt want anything to do with blood. I worked in the hospital as a transporter and I saw the ppl that were on hemodialysis and I ddnt want any part of that. I had my catheter placed in june of 2009. I started at home on the 22nd of june. well in july the day after my birthday, my catheter kinked. It  twisted 460 degrees. My surgeon that put it in said hes been putting them in for 22 years and hes had never seen one do that before. Im learning that I am a strange person, nothing ever goes smoothly or the way it is suposed to ever.They went in and moved it all the way to the bottom so tht it wouldnt move again. i did very well for the next 2 years, with only a couple infection, til may of this year. from may until july i had 3 infections
 when this ropund of problems started, i had the infection that kept coming back, i was told that we would pull the catheter, and leave it out for 4 to 6 weeks, to give me time to get rid of the infection and allow for everything to heal. i had to go on hemo, and i hate it it, its makes all my labs go to dirt,. i hate 3 days of the week whre i am absolutely worthless, bc when i come out, i have a migraine headache and nothing will take it away, and the whole day before im dreading having to go knowing how i will feel coming out i usuallly just go home and sleep, on the days when im not at dialysis, im so weak its rediculous, i dnt know how pppl do this for years and yeaars, but most of them are old and retired or in nursing homes so they rnt really there mentally hanyway. if they let the macjine pull off too much fluid, every muscle in ur legs and arms cramp and like charlie horse cramp, if they dnt take enough, u get issues like edema, fluid collecting in places where it shouldnt like in ur joints, which makes moving them excrucuiatingly painfull. well a week or so after i got the surgery to remove the catheter,i started throwing up randomly and having severe abdominal pain, i thought the infection was back bc tht what it felt like, but i was wrong, i had the hernia. so another setback, anoither surgery i would need. well luckily b4 i had the surgery for just the hernia, my nurse told me i could have the hernia reapir together with putting the pd line back in. so i went in for surgery number 2, (ive had 3 previous surgeries b4 these). thought it went well, surgeon said he cleaned everything out bc there was a lot of scar tissue from the previous infections, and that interferes with dialysis. well, had fevers randomly for 4 weeks they ddnt know why they were just there, but made me miserable. well my nurse failed and ddnt flush out the line, and my body healed over it, making it completly useless. so the surgeon said he would go in (surgery number 3) and see what happened with it and clean it and make it work. well 3 days out of this surgery, its not working, i cant get anything to come out nor can i get anything to come in. i dnt know what to do, i dnt know what options i have. with this tube in my chest im not allowed to take showers or baths, i cant get in the water at the beach, not being able to shower doesnt seem like that big of a deal, but go t2 3 weeks without washing ur hair and see how disgusting u feel, i feel like i stink, nobody says anything but thats bc they aare just being polite.
At this point, my catheter is lazy, it will work for a flush like 500mL, but when I hook up to the machine and try to put my usual 1800, im lucky to get 1000 back, and then my catheter doesnt work at all, nothing in nothing out. the next day its like it resets and works perfectly but only for small amounts no more thn 500mL, so until they get it to work im stuck on hemo... my 4 to 6 weeks is looking like it gonna turn into 4 to 6 months
im 21 years old and i feel like im 50,... if anyone has had any experience with their cath doing whta mins doing plz let me know something to do

[willowtreewren]

I'm so very sorry that you are having these issues at such a young age. 

I have not experience with PD, so I can't help you there. Did you ever find out what made your BP go so high?

 

Aleta

[gkcoley]

not all hemo patients are old, im 24 and been on hemo since i was 12, went through highschool and college doing it.  I had migraines like that for awhile and they eventually realized it was another, unrelated issue that flared up due to fluid being removed.  I was on PD from age 8 to 12, they made me go hemo casue too many infections.  i had a really hard time switching to hemo, they even sent me to a psychologist.  Now it's jsut a part of me.  Hemo is rough trying to get things sorted out and you have to control labs more with diet etc. but once things get figured out treatments dont really affect you aside from being weak the day of the treatment.  The weakness isnt TOO bad after awhile, i even had classes on dialysis days.

[bleija]

i am having a really hard time switching over,even still, i cant tell if they r taking off too much or not enough, doesnt matter bc im so miserable either way. i cant do anything,our finances are so bad, we cant even make our bill since im not workig right now. My husband is picking up overtime but still... and all i can do is sit at home go to drs and dialysis. i hate that more than anything. Ive never had so much body aches and pains. Ive had pleurisy or pleurisy like something for the last 2 months. i cant sleep lying down, have to attempt sleep sitting up on the couch, which i dnt get good sleep so i spend my days trying to nap. joint pain, never dealt with that on PD. its like such a tease that i have my PD cath, but its not working right. and doc told me yesterday that there wasnt much more that he could really do, and i feel like im about to lose the option of PD all together.

[Ang]

 

[lmunchkin]

First off Bleija, let may say Welcome to IHD.  Iam spouse to one who has ESRD.  He was 56 yrs old when starting all this!  In Nov. 2004 he went to ER day after thanksgiving and WHAM!  BP 236/2 hundred something (can't remember exactly).  But he was lucky to be alive.  His BS was 600 something!

Few hours later, they had him in hospital for 2 weeks and diagnosed with Stage 5 Renal Failure and Diabeties.  Never saw it coming!

So sorry you are going through this at such a young age!  I wish I could wave a wand and all this crap would go away for everyone, but I can't, but I can try to help and give the best support I can.  That is all we can do!  There is another option out there (actually 2) transplant and home hemo!

Can you get a transplant?  I think most prefer to do hemo at home rather than in-center.  We do NxStage at home and have actually found it better for him than the PD, and PD worked pretty good too!

Just wish I could help you get through this!  I hate this!  It seems like more and more young people have fallen to this dreadful disease!

Welcome again, and hope you find some sort of Peace amoung this maddeness!

God Bless,

lmunchkin

 

[Marsh]

 

[Rerun]

Welcome to IHD.  I'm so glad you found us.  Stay tuned here.  We will try and answer all your questions.

Hang in there honey.   

Rerun, Moderator     

[jbeany]

 
 

Has anyone talked to you about getting a fistula?  It gets rid of the miserable hemo cath in your neck.  If you get one, you can still go back on PD, but you'll have the fistula to use when you have infection problems.  It will take a while to heal up and be ready to use, but it's good to have.
If you do end up on hemo full time, it will get better.  The first bit is completely miserable because they are just guessing at how much fluid they need to take off.  Once that gets worked out, most people do see an improvement.  It's never going to be a good as being healthy, but it's better than the first couple of months!
Haven't you got anyone who can help you wash your hair over a sink?  Or just kneel next to the tub and duck your head under the faucet?  A local Quick-cut hair salon should be able to do it for not too much money, too.  If you check on here, there are a number of people who can offer you tips on how to shower with a cath, too.  Different ways to protect it and keep it dry are out there.  There's a link on here somewhere to Korshield, and there are options for covering it with tegaderm, too.  When everything else seems like it's going to hell, something like clean hair can certainly make a difference!

Hang in there!

jbeany, Moderator

[Poppylicious]

  bleija.  I'm so sorry you're going through this right now.  Is there no one who can help you wash your hair?

*huggles*

[CebuShan]

         I too found out about my kidney failure by being admitted to the hospital for my blood pressure. I'm 51 and not retired or living in nursing home! Lol! When I had my permacath, my husband installed a hand held shower for me. I was able to take a shower without help. To wash my hair, I bought a small "step" that I sat on in the shower. With the hand held I could turn it off inbetween. I understand your anger I've had a lot of it myself. This site has been a life saver/sanity saver for me! Keep coming back. Lots of support here. Good Luck!   

[bleija]

if i can i really want to avoid getting a fistula if i can. i dnt like the way they look honestly. Im actually going to gainesville to have a test done to see where the fluid is going and why its not coming back out. hopefully they can find the problem and fix it. my husband works at a hospital and has been bring me this plastic bandaging its not tegaderm its a little bit thicker and sticks better, and we have been covering the catheter up, and i can take a no more than 10 min shower, which is better than nothing.

looking now in hindsight i can see the first signs of kidney failure, i remember them saying there was protein in my urine, but i dnt understand why they never looked into it, i kinda got pushed through the cracks, the pediatrician i had, bc i had medicaid, he took on way too many patients, and i barely ever saw him, he actually lost his licence a couple years ago, but theres nothing i can do about it now