Allergic to dialysis

[mysticnight]

Hey all,
this is my first post here. Nice to meet  ya.

I started dialysis about 6 weeks ago, and go to the hospital 3x/week. Each time since the first one I get VERY sick and takes days to recover. After Friday nights torture session, it takes until last Sun to start feeling like myself and functional again. So I really only have one day when I am not sick. The docs/nurses watch me, and their only concern is my bp being too high at the end of treatment, yet it came in at about 140/something - if only I would double my bp meds all would be well in their paperwork-bound world. Apparently all my other reactions are fine, and they have no idea what is wrong. Perhaps you guys will have more knowledge than the idiot medical people.

My reaction starts 2 minutes into it, and in order of increasing symptoms:
feeling disconnected from myself, lost in space
double fuzzy vision
trouble breathing, lots of lung phlem
coughing
Heart racing
Headache
Sleepy
tongue swells some

15 minutes into it:
Head like filled with formaldehyde, toxic overload
Suddenly ice cold,
Shaking
Cant keep awake,
nauseau
severe liver pain
Disoriented,  lost sense of self,  confused
Cant sit still/need to run (adrenaline?)
Hyper,  restless
very depressed, crying, hopeless, panic

I "sleep" at this point, shaking uncontrollably under a winter coat and 6 heated blankets. I get woken up when it is over. These symptoms at end:
Difficulty waking up
Severe liver pain
Kidneys ache
Nauseau
Lungs full
Shaking
Heart still racing
Abdomen inside cold and sore
Drunk &  hungover at same time
Achy like flu
Pupils dilated
Tongue coated white
metallic taste in mouth
confused, disoriented, can barely talk, lack of balance, body stiff

temp and bp all over the place, from normal to feverish to normal, and bp goes down a bit then way up to over 200 at end.
skin is red and itchy. If I scratch, I get sores and even more itchiness.
Lots of gas, burping, swollen abdomen.

I had thought this is an allergic reaction, probably to one of chemicals, such as acetone, vinegar (known bad reactions to it), aldehyes (also known reactions)
doc says its impossible to react to dialysis chemicals in such small amounts, and there is nothing else to change it to. btw, I react very badly to benedryl and have tons of food/chemical intolerances.

All weekend I have been in a panic about going tonight to be tortured again - PTSD? from dialysis? lol 
Any idea what this reaction is about?

thanks
Rachel

[obsidianom]

I know there are true allergies to some dialysis filters and this article discusses it. I dont have any idea if this is happening to you. I just thought this was interesting.


Int J Artif Organs. 2013 May 17;36(5):363-6. doi: 10.5301/ijao.5000136. Epub 2013 Feb 19.

Anaphylactoid reaction during first hemofiltration
with a PUREMA polysulfone membrane.

Heegard KD1, Tilley MA, Stewart IJ, Edgecombe HP, Lundy JB, Renz EM, Chung KK.
Author information

Abstract

Adverse reactions during hemodialysis are extremely common and include a wide range of clinical presentations from mild to life threatening. We present a case of a 34 year old woman in the Burn Intensive Care Unit, who developed acute kidney injury requiring renal replacement therapy. She was placed on continuous veno-venous hemofiltration with the NxStage machine which uses a synthetic PUREMA polyethersulfone filter sterilized by gamma radiation. Within two minutes of initiating hemofiltration, the patient complained of pruritus as well as dyspnea and became flushed and agitated. She subsequently developed hypotension ultimately resulting in cardiopulmonary arrest. Cardiopulmonary resuscitation was initiated and the patient was given epinephrine with return of spontaneous circulation. The following day, the patient was rechallenged with a PUREMA filter, and had a similar reaction with flushing, dyspnea, pruritus and hypotension requiring treatment to be discontinued. The patient was transitioned to the Prismaflex filter, another synthetic membrane, which she tolerated well and continued to utilize through the remainder of her hospital course without complication. Her clinical presentation was consistent with an anaphylactoid reaction, though a tryptase level was not obtained and a radioallergosorbent test performed with membrane material was negative. This case shows the difficulty of identifying the cause of hypersensitivity reactions involving synthetic membranes not sterilized by ethylene oxide, a commonly use sterilizing agent known to cause hypersensitivity reactions. This rare, but potentially fatal reaction has not previously been reported with a PUREMA filter and this case should raise awareness of hypersensitivity reactions with this widely used method of renal replacement therapy.

[jeannea]

I don't know enough to know if you're allergic. But I don't understand some of your diagnosis. How do you know your head is like it is filled with formaldehyde? Has that happened before? What do you mean your lungs are full? Are they filled with fluid or something else? If it's fluid your dialysis needs to be adjusted. There are people who have panic attacks on dialysis. You have some symptoms of that. The doctor can give you meds for that. Others of us have felt like crap on dialysis esp in the beginning. It can take months for your body to adjust to dialysis. Going home to sleep and feeling nausea and icky all over is common. Feeling sick all the time is not unusual until you adjust.

Are you following your diet and fluid restrictions? You will feel better if they have less to take off at dialysis. I think you have to give it a chance. Yes dialysis sucks. Yes you can feel crappy. But if you go into it looking for symptoms you will find them. Start by educating yourself. Watch your diet and fluid. Watch your blood pressure. Ask questions at dialysis about how much fluid they are taking off. Write down for yourself your weight and BP before and after. Find ways to be more comfortable at dialysis. Take a comfy blanket, maybe a pillow, music and earphones or ipad or whatever. Focus on your breathing when you start to get panicky. Try not to look at the clock. Get lots of rest in between treatments.

Yes, it is possible you're allergic but it is also very possible you are not. As you learn more and collect information, you will be able to work with the doctor to get the best treatment. I know this is really really hard. We all know. But you can do it. Come back here any time and ask questions about flow rates and UF and whatever and the people here know the answers.

[amanda100wilson]

Jeannea, I agree with you.

[Pod99966]

Most of your complaints are common. Many of them are common to me. But a lot of your complaints are just repeating the same thing over again.

I went through your whole list and almost everything on there can be explained as normal, or possibly a panic attack.

Some I didn't quite understand, I do sympathize though. Dialysis is horrible. I still cringe every single time they stick me with a needle. And every time I wonder, "Will I ever get used to it?"

[Speedy1wrc]

When my BP drops too low, a similar thing happens to me.

I won't give you a diagnosis but this is what happens to me.

If my BP drops I get sleepy as well. If it continues to drop I will get fuzzy and very warm. In reaction my heart wants to get more blood to the brain so my heart rate will jump dramatically. At this point the transfer of oxygen through the lungs decrease and I will struggle to breath. A bit of panic might ensue.

As I give myself saline my BP will rise and things go back to normal. The stress of all that will however male me very cold and I will bundle up and fall asleep. I will usually awake in a puddle of sweat. After dialysis I am whipped till the next day

All that said, it doesn't happen any more. When my BP drops below 120 I  stop UF and start watching every 10 to 15 minutes till it comes back up.

If you're in center most likely you don't see your numbers. I am at home and do everything myself. Ask of they can turn the machine so you can see it. Ask them to show you where the BP readings are displayed. Start monitoring your BP. If it is dropping talk to your nephrologists and see if they can raise your critical threshold. Typically the staff won't do anything till you are below 100. For you that may be too late. When I was in center it may take awhile before a tech would come by and I could tell them to stop UF and usually it was too late.

If the machine is set to take readings every 30 minutes, setting it for every 15 may help catch a drop before it's too late. If you're going in with a starting aBP of 140 your prescription may just be too much.

More data will help. Watch your BP, write it down to take with you. Your nephrologists will only see the flowsheet that the techs fill out (or not). I know for a fact in my old center they made stuff up. Do you take BP meds anywhere close to before going in? Sometimes they can kick in while on causing rapid drops which are never good. Review your labs with your nephrologist. If you don't mind sharing post them here. Many eyes here might spot something out of the ordinary.

If your BP is dropping do they treat you with a hypertonic? In center I had that a few times and felt horrible at least till the next day.

Still a lot of questions and I'll repeat I am not diagnosing your issue, rather relating it to symptoms I have had and what caused them.

I hope this helps.

[Lucinda]

I was very allergic when I first started dialysis and sometimes I am still sensitive.  Had a number of your issues.  Turns out I was allergic to the product they used to sterilize the lines.  On top of some of the issues you had, I use to blow up like a balloon.  To overcome it, I put two full bags of saline through the lines before going on the machine and that seems to do the trick.  That kind of allergic reaction can make other symptoms appear worse.  Not by any means saying that you are not having those symptoms, but one allergic reaction will create a chain reaction.  I hope things are getting better for you.