Feeling sorry for myself

[SweetyPie]

It has been a rough journey on dialysis. I started Feb 2017 so not a full year just yet. But in total 7 years on peritoneal dialysis. The other day it just came to mind that there was a month beginning months on hemo where I would get severe headaches, throw up each session, feel nauseous and my bp would shoot up to 180/200. It was really bad that I would cry each treatment. The nurse would tell the techs to not do anything and to leave me alone when I was in so much pain. I would cry in agony the rest of the day and dread going to dialysis the next day almost felt suffocated, felt like I didn't know where to go how to avoid such a situation. After a month of torture my dad was fed up and finally reached the doctor to ask him what's going on and why this is happening. When i would cry in front of the doctor also throw up he would just say you have to get used to it. But my dad was really fed up and really gave it to him saying this isn't a way to live. He then tells him we are probably pulling too much fluid off her body which causes her bp to shoot up. Then the next treatment things go better bit by bit. Few months later my schedule changed due to school. So that nurse wasn't there those days and my doctor changed. The second I start feeling nauseous, dizzy and a bit uncomfortable they run to me and quickly turn the water off and give me saline when needed. This is where it gets me how much i suffered and how the nurse didnt have a clue how to stop pulling water. I have low bp even when I have 3 kilos of water on me it's crazy. And before I didn't eat or drink at all but when on dialysis because too much was getting pulled out my bp shot up. Yes, im a tricky situation but with my symptoms they could've figured something out. Just remembered this and it's got me feeling down. But ill try to really advocate for myself next time i guess : (












Sp mod Cas

[Michael Murphy]

There is a reason this site is called Ihatedialysis there are no hard answers to what the correct dry weight is and the fact that many things influence your weight  And if you are bricked, constipated, a condition made worse by too much fluid being removed. It becomes a never ending contest of wills in how much fluid to remove.  Many nurses and techs forget it’s your body and think they should be able to remove what ever fluid they want to.  As people become more experienced the process becomes easier if I am bricked and I get a fluid removing enthusiastic tech or nurse I subtract a kilo or two from my weight, it’s easier than fighting with them.  I also have learned to ask how much they plan to take and veto any excessive removal plans.  As for challenging my dry weigh I periodically ask to go  a half a kilo below my current dry weight. If I feel ok I try it again in the next session after 2 weeks I will have my dry weight lowered.  This way I controll the process.  Good luck

[cassandra]

Hi Aaisha, it's okay feeling sorry for yourself. Just don't waste too much time on it. Live and learn! And if there's no transplant around the corner, start thinking about learning about the machine, learning selfcare, home hemo.


It took 10 years in-centre HD after 5 years PD/APD to start Home Hd. I still wish I had started that 20 years ago.


All the best for the New Year honey.


Lots of love, luck and strength, Cas

[Charlie B53]

I only just past the one year mark on Hemo after 3 1/2 years on PD.  I quickly learned to be very strict on my fluid weight gains and dry weight.

If I am too lax and take on 3 K or more my legs cramp during treatments.  That ain't no fun, nor are the next 18 hours if I dare to lay down and/or try to take a nap.  Those cramps return.

Maybe I am a Wimp as there are those at my clinic that regularly have to take off over 5, or 6 K's.  I can't imagine.

I am a pretty good size Guy.  I cannot imagine the effects on a  little person like small women or children.  It cannot be easy.

Learning to control our diet and the coping skills to deal with thirst need to be developed and mandatory training for all renal patients.

[kristina]

Dear Aaisha.Dar,
Just to send you my best wishes and hopefully "things" get better in the future.
Take great care of yourself and all the best from Kristina.

[Paul]

It makes me so angry when nurses/techs/doctors refuse to listen to the patient. I won't accept it if it happens to me, however I have done plenty of research into my problems and know what is good or bad. For example, I was overloaded yesterday (combination of a dialysis going wrong and being naughty over Christmas). Unfortunately needing a full 4 litres off cause extreme cramps and a lot of pain. The nurse saw me writhing in agony and moaning and rushed over to stop drawing water and put some saline back in me. I told him not to put any liquid in me as I was overloaded, he obliged, and when the pain had decreased I asked them to start taking fluid at the full rate again. He did so. Both of these requests were a little dangerous, but I knew the risks and the nurse knew that I knew the risks, so he obliged on an "on your own head be it" basis. If they had not been aware that I knew the risks he would probably have refused both requests.

Although I don't usually have problems with the nurses, I have a trick in other situations that you could use for techs/nurses (works on doctors too, in my experience). If someone is doing something to me that I don't want done, or refusing to do something that I do what done, I simply ask for their full name and write it down. If you don't have a piece of paper, ask them to write their full name on a piece of paper and give it to you. If they refuse (many people will only give you their first name, which is no good) I simply get out my 'phone and take a photo of them.

The reason this works is that they automatically assume you are going to take legal action and, unless the result of doing what you want will cause them more trouble than a court case, they jump to it. But do not make the mistake of explaining, saying something like "Right, I'm going to sue you then." Always sounds like a lie, and weakens your position. Just take down their name (or photograph) and pocket it. If they ask you why you want their name, simply say "So I can take further action about this." If they ask "What further action?" Reply "I don't know, I'll have to speak my solicitor/lawyer first. I'll do whatever they advise is best." This rarely fails to get a good result, if you are convincing (if you grin or sound like you are fibbing, it will just make matters worse for you).

[SweetyPie]

Thank you all for ur posts and making me feel better. Ive been dealing with doctors not listening to what I have to say all my life. Its frustrating and it seems like they don't have a heart. Im glad im over that awful phase and I pretty much got down the jist of hemodialysis.