Introducing myself

Discussions for Patients, Family, and Friends HD For Patients
1

Hello all:) I am new to the board and have found that the information on here to be very helpful, although I do have so many questions that I would still like to ask.

I am 38 years old, married, three kids and have been on disability since 92 with severe chronic back problems.

It started in May of this year. I had been feeling sick for sometime, no appetite to speak of, trouble breathing, which is aggravated by me being a two/three pack a day smoker, COPD, asthma, and emphysema. My blood pressure, that I have been on medication for years, would not come down. It was at a very dangerous level. I ended up going to the hospital, by ambulance, and while in the ER, I was intubated, placed in ICU for the next seven days. My creatine was 18. I was dialyzed 4 days in a row, lost thirty pounds, and started getting much better.

I have already gone for transplant evaluation, at which time they found blockage in my heart. I had additional tests done and it was determined that I had a total of 4 blockages, only one being bad enough that I had to have a stent placed.

Fast forward. I have been going to dialysis, three times a week, for the most part up until recently.

I go in feeling absolutely wonderful, no problems, get hooked up to the machine for three and a half hours and come out feeling like crap. Nausea, diarrhea, severe muscle weakness, and sometimes I even develop a low grade fever, and an overall feeling like I am going to die any minute.

Therefore, I admit that I have been guilty of calling in “well”. When I skip I feel wonderful, no problems whatsoever. I watch what I eat, and drink and for the most part my labs have been alright. Although I don’t hear about my labs as often as I would like, since we have a dietitian that is absent about 95% of the time,and no social worker any longer.

To top it all off, the nurse that I always seem to get is not the friendliest in the group. She came in from another clinic recently and has even butted heads with the other nurses and techs there at the clinic.

The other day, I was hooked up and running a low grade fever,99.7 and I asked a tech if I could please have a little sip of water. Well she brought me a little “pill cup” of water. I unforunately shake sometimes and this happened to be one of those times and I tried to raise this little pill cup up to my mouth. I ended up wearing what was in the cup, which was no big deal to me because it wasn’t really enough to even get me wet really. About an hour later I still was thirsty and asked the same tech if she would mind getting me another pill cup and let me see if I could this time get it in my mouth. She didn’t have a problem with it. The nurse saw her going to get me some water and told her I couldn’t have anymore and that she should write her up, WTF? I haven’t figured that one out yet, but nevertheless I was denied water.

Well that is about it folks. I guess there is no real question there just a look at the way things are going for me. Also, I forgot to mention that our clinic manager hasn’t been around for weeks now. I don’t know if she has left, that seems to be what is happening a lot, or if something else has happened. I know that the company owns many clinics and they had the social worker working at 4 different clinics and that is one of the main reasons she resigned. I just hope our manager hasn’t met the same fate as our social worker.

Thanks for listening to me ramble on about this. Take care guys/gals :slight_smile:
Richard

2

Hi Richard

Sorry to hear you’re having a hard time on dialysis. I have to wonder if your nephrologist is making any effort at all to optimize your dialysis prescription. There are a number of different things that can be varied, and sometimes it makes a big difference. Not everyone is the same. Unfortunately, it sounds like in many for-profit dialysis clinics, they take the cookie cutter approach.

You might feel better when you miss dialysis, but that’s truly a prescription for disaster. You can’t feel things like dangerously-elevated potassium, which can kill you pretty quickly, and, you might not feel the effects of chronically having too much fluid for your heart to pump around until you have heart failure.

Not to defend the staff where you dialyze, but there could be a reason for not wanting you to drink at that particular time. Maybe you already had a lot of fluid to take off. In a case like that, they might not want you to add more. The more you have to take off during a treatment, the worse you will feel both during and after. Or who knows, maybe there was no reason at all. Some people do get hypotension when they eat or drink while on dialysis.

I’m on home hemodialysis now, but I started in a dialysis centre where I was for almost 3 years. It got better eventually, but for sure, it took a good six months. The first few months were pretty hard. I hope it will improve for you.

3

Man, sorry about the tuff times your having at your clinic, doesn’t sound good at all, seems your in an un-professional environment there, BUT who knows, maybe there’s more to it that we don’t know…

BUT

If you really think there’s something wrong there you might want to take a visit at http://www.dialysisethics.org where many other patients share concerns you have. They have advocates there which guide you on how to resolve these kinds of problems…nice thing about that site is its by patients and professionals working in the community…

Or

get out of that clinic and head to a new one where you can get trained to go home… 8)

4

One of the problems with 3 times a week dialysis is that patients often say that they feel worse after dialysis than before. This is even more the case when there is a lot of fluid to take off during a treatment. The dialysis machine can only remove so much and when it’s cranked up to remove that amount, it leaves people feeling bad after dialysis.

Skipping treatments is linked with more hospitalizations and higher rate of mortality. Not only that, but when you skip treatments, you have more fluid to take off the next time making that dialysis treatment that much harder. Also, if you skip dialysis treatments, transplant staff may think that you would not stick with the transplant protocol and take your medicines like you should.

I have worked with people on dialysis for years. From them I learned how hard it is to stick to the in-center dialysis diet and fluid restriction. Thank goodness people have options and there are some things that might help you do a better job of keeping your fluid intake in the 2-3 kg range between treatments.
– Watch the salt in your diet. You may be getting more salt in your diet especially if you buy boxed, canned, or processed foods. Salt can affect your thirst.
– Look for dry mouth as a side effect of medicine and look for other medicines that will do the same thing without thirst as a side effect. Blood pressure medicines, water pills, pills for mood, etc. are some that can do this.
– If you’re diabetic,keep your blood sugar under control. A high blood sugar can make you thirsty.
– Get help to stop smoking. Smoking increases thirst, damages lungs, kidneys, and the circulatory system. If you can get help to stop smoking it should help your thirst as well as your other health problems and may be one of the factors the transplant program considers in whether to accept you for transplant if your heart problems can be corrected.
– Chew gum (Quench helps to make saliva) and/or use some off the other tricks that patients have reported on the Life Options website under “tips” at http://www.lifeoptions.org.

Although it seems cruel, I suspect the staff at the clinic want to limit the fluid that they give people to drink on dialysis so they know how much they need to take off. As you know, they set the machine to take off fluid weight based on your weight when you came in minus your “dry weight.”

If what you eat and drink are important in your quality of life, you might want to consider nocturnal hemodialysis. Some clinics offer nocturnal in-center but most patients that do nocturnal hemodialysis learn to do it at home. Check the database on this site for clinics that offer this treatment in your area…remember, the home training clinic can be as far away as you’d be willing to drive once a month after you’re trained.

5

Hi y’all,

We developed this board to support home dialysis options–not to solve the many problems associated with in-center hemo. If you’re interested in a home treatment–PD or home hemo–we are happy to help answer your questions or provide information to aid your decision-making.

If not, please address your in-center hemo questions to one of the many other sites devoted to that purpose (including our own Life Options site http://www.lifeoptions.org and Kidney School http://www.kidneyschool.org).