allergic to dialysis!

[gothiclovemonkey]

I have been on dialysis for over 5 years now. 5 years, and I am JUST NOW getting an answer to the question I have been asking the whole damn time!

Why does my nose itch like mad while I am on the machine? Itching to the point I want to cut my nose off, nothing seems to make it stop at all, scratching it bloody nearly every treatment. Sneezing nearly the whole time... No answers for 5 years. My old doctor was a.... @#$%^&*.  So I move and get a new clinic and doctors, still dealing with this itch, but now a new symptom, half way through my treatment, I can't breathe properly, and then a terrible headache. I feel like I am having an asthma attack, I am told its a panic attack at first, but then one nurse notices that I am actually really tight and wheezy. So, saturday the new doc comes in, we are talking and I think, well, what the heck do I have to lose mentioning it? he can tell me I am crazy, or laugh at me like the old doc did, or maybe he will actually have an answer... So I tell him, and what do you know? IT IS POSSIBLE! The whole time I have been in misery, dreading dialysis itches and headaches and barely breathing like that, because I am probably allergic to something in the dialyzer... AND it can be fixed, there are things that can be done to make it clear of the solution, a different type of dialyzer, and medication. We are trying meds first.

I never liked my old doctor, he never wanted to listen, he thought I was insane, and just had mental issues, and he never really treated my problems, only offering up the worst possible things, like pain pills and sedatives. I am so thankful for my new doctors and dialysis staff.

I hope that if any of you experience this, that you can have the peace of mind in knowing you arent crazy and the nerve to tell the doctor when hes being a jerkface. We do know our bodies better than they do, despite what they may think.

My new doctor is awesome, he even 'understands' my non0compliancy on the occasion that i am... he still lectures me, but at least he can be understanding about it. (mine is usually due to the fact i have no child care, and also when it comes to the diet i still struggle but i am getting there!)
As much as I hate dialysis, it helps having a good staff. I think going wont be as stressful for me now that I know they are willing to try to find whats going on instead of just writing me off.

and i used to actually joke that i was allergic to dialysis, who knew i was right?!      this.whole.time.

[kit78]

Thank God you finally found out what the problem was. How awful for you too have gone through this for 5 years.  Well, they are practitioners, ya know, "Practicing medicine" .
Too bad they can't all "practice" somewhere else first!

I swell in my hands every time and when I am done and off the machine, the swelling goes away.  I do itch a wee bit but nothing like you describe.  I have often wondered if it was the bicarb I am allergic too.

I sure hope they get it stabilized for you and you start feeling better. Keep us posted!

[jeannea]

What a nightmare! I'm glad you have a doctor who will help you.

[billybags]

it is wonderful when you find the right Doctor. Hope he sorts this out for you.

[Hazmat35]

It is really funny the way that people react to some questions that you ask.  Espically the "professionals"; doctors, nurses; social workers.  Sometimes something will happen, or you will get a "symptom' of some sorts, and they look at you like you are a freaking alien or something from another planet. 

I love the response "I've been doing this for 20 years, and have studied everything on the subject and this is the 1st I've ever heard of that."   

Like, you are making it up just for shits and giggles. 

[gothiclovemonkey]

well, i cant say that i blame them in my case...
I am the one who asked "If heprin is PORK bollus, then, what If i were jewish?" And got the answer they make horse bollus as well... So I then said, "Well, what if I were vegan?"
I tend to ask some off the wall stuff... hehehe

[Lexxtech18]

I'm glad you're getting it figured out GLM!

I have been allergic to something (solution, dialyzer, I'm not sure) for 7 years, and no one was willing to investigate. They just gave me Benadryl, which I hated because it makes you so sleepy and my body actually became addicted to it for a long time. Anyway, I recently moved back to my hometown where a new dialysis unit was built. The manager of the unit is AMAZING, she actually listens instead of trying to drug you up! We have the new special dialyzers on order, hoping they will get here soon and hoping they will work for me so I can stop itching and feeling icky!!

[gothiclovemonkey]

I'm glad you're getting it figured out GLM!

I have been allergic to something (solution, dialyzer, I'm not sure) for 7 years, and no one was willing to investigate. They just gave me Benadryl, which I hated because it makes you so sleepy and my body actually became addicted to it for a long time. Anyway, I recently moved back to my hometown where a new dialysis unit was built. The manager of the unit is AMAZING, she actually listens instead of trying to drug you up! We have the new special dialyzers on order, hoping they will get here soon and hoping they will work for me so I can stop itching and feeling icky!!

it always nice to be heard. the other drs at my clinic actually dont believe me when i told them what the one dr said... but i talked to a nurse today, after shed given me benedryl, and she said shed be happy to try to push salene through before they hook me up.

[CebuShan]

Thank goodness you finally found a Dr. that will listen to you! I probably would never have even started i I didn't like a trust my Dr.
Hopefull, you will find some relief soon!   

[Lexxtech18]

I don't understand WHY so many doctors think you make these things up?! It's crazy! I have been in hospitals my whole, entire life. Either being a patient or an employee, and unfortunately it is not so uncommon to come in contact with doctors who are just in it for the paycheck. Even worse when you see behind the scenes, working in a hospital.  Ugh. I wish I had the money and the smarts to be a doctor, myself. I would try my best to make this world a better place!

[Jean]

That is just wonderful that at least some one is willing to work with you about it. Yes, I too have noticed my Dco. looking at me oddly and had one dermatologist tell me I was confused. Confused??? Never went back to her and never will.