New and Just started Hemo Dialysis

[Cajun Sue]

Hello everyone, I just started Monday and have been on other boards and in yahoo group for awhile but now that I am in the center there are things I don't understand like today
My blood pressure didn't drop today like it did the last time, but it was on its way and the nurse was there. I had a different problem this time, I was clooting on the top of my dialysiser and on the bottom, I only had an hour left and the alarm was going off, they had to take the dialysiser off and put on a dry pack or something like that, I was asking all kinds of questions like why did my blood clot up and they said it happens and it is not a rare thing for that, they put some heperin in the dry pack and took for ever to get started again, she kept messing with the hose. The girl thqt took my dialysiser to the back came back and told them there was blood clotted on the bottom of it last time too that she noitced, one nurse told me they will use more heparin the next treatment with my dialysiser, they reuse so I will have the same one back and if it does it again I will have to have a new one put on. They told me I gained 3 kilos from day before yesterday and that was way too much, I didn't think I had drank that much,they took 2.something off me today and said I did good and got it all off. I am asking questions all the time and some act like they want to answer and then there are a couple that act like I should just site there and be a good girl and don't worry about anything.Theree is not one machine turned where a patient can see what is happening on the front of the machine and if they turned it where ai could see it they would not be able to get to the front, the machines and chairs are that close to each other.I just want to know what the hell they are doing, that is my blood clotting up, so is this a normal thing to happen, oh when my blood pressure was dropping I knew right away because my stomach started cramping alittle but not bad likethe other day and I didn't get dirhrrea today. I wish we had spell check on here cause ai know I mispelled words. I go in at 6;30 and there are only a handful of patients so those nurses have plenty of time to keep a closer watch on the machines, one came up and was messing with the settings and I asked her what she was doing and she said she was setting the blood pressure alarm that I was on an older machine, the newer ones you don't have to set, so I wonder how long mine was not set. I am going to give myself more time before I sound too pushy, I don't want them not to like me, but then I don't want them screwing with me either. So please guys help me out here, what was going on today???? She even asked me if I wanted to finish the last hour and I told her yes, I wanted all the time I could get, they had problems again getting one ofthe needles in, it was against the wall she said, a couple of them acted like they had never seen a graft like mine.Sue

[Beth Witten MSW ACSW]

Although it can happen, dialyzers usually don't clot during dialysis. What prevents clotting is heparin. Most of the time, heparin is drawn up into a syringe that is put into a heparin pump and is delivered to you through your treatment. Heparin thins your blood while it's being pumped into your body, but heparin breaks down in your body pretty quickly. Toward the end of dialysis, the staff stop the heparin from going into your body so when dialysis ends, the blood thinning effects of heparin are reduced and you don't continue to bleed for a long time afterward.

Meanwhile, look at your dialyzer when you approach your dialysis machine. Always look to be sure it is yours. If you don't know how to tell this, ask. If it looks like there are fibers that are clotted, the dialyzer won't be as effective at removing toxins as a dialyzer that doesn't have any clotted fibers. I'm proud of you for telling the staff at your clinic that you didn't want off dialysis early when your dialyzer clotted. Ask for a new dialyzer if you're concerned about it. Having dialyzer clot means that you lose more blood which can make your anemia and thus your fatigue worse. Since your clinic is doing dialyzer reuse, hopefully they gave you information about reuse, but you can also read about dialyzer reuse in this National Kidney Foundation booklet.
http://www.kidney.org/atoz/pdf/dialyzer_reuse.pdf

One of the problems with dialysis is that someone has to estimate your dry weight. This is not a fixed number and changes as you gain or lose weight. If your appetite is better, you may gain weight. If your appetite is poor, you may lose weight. You may lose weight if you have diarrhea.
If the staff believe your dry weight is higher than it is because you've had diarrhea or vomiting, they won't remove enough fluid and you could feel short of breath and have swelling in your tissues. If they believe your dry weight is lower than it is because you're feeling better and eating better, they could try to take off more fluid than you have which could cause your blood pressure to drop and you could have cramps.

You can really help yourself avoid symptoms during and between dialysis treatments by keeping your weight gains around 1 kg a day. The diet and fluid limits on 3 times a week hemodialysis are not easy to follow. You can find tips from patients and staff under "Stories and Strategies" that you can get to from the Life Options home page.

If they're having problems sticking your graft, some clinics have a go-to nurse or technician that staff ask to stick someone who is a hard stick. If your clinic has someone like this, he/she could stick you and show others how he/she does it. Another thing the staff could do is to ask the surgeon who placed your graft to give them a diagram that shows where your graft is and how it runs. It's possible that it's deeper or more shallow than the staff think it is.

There are many topics that may interest you on Kidney School.
http://www.kidneyschool.org

[Cajun Sue]

Thank you so much for answering me, My name is on my dialysiser and I have a number to check to make sure it is mine. Also I am not sure how to tell if there is clotted fibers but I will look Tuesday, I rmember the nurse telling me that at first they don't use that much heparen, after yu have been on awhile they use more. I am suppose to see the dietion Tuesday to fiure out what ai should be drinking and eating, they told me what I needed to stay away from and about what to drink but I will know more Tuesday. And I will also tell the next one that puts the needles in which one did them and knows where to put them if she is different. But that nurse sure told me that clotting happens all the time there. You have to reuse there, so it would do no good to ask for a new one, but she did say if it clots up Tuesday they will have to give me a new one. I have been to Kidney school, that was the first place the PD Nurse told me about before I was on dialysis. I will be reqding up on the post here. Sue

[DoriSchatell]

Hi Sue,

I think you'll find the Nutrition module of Kidney School http://www.kidneyschoo.org. especially helpful right now, as you try to understand an in-center hemo diet. It's complicated at first, and it definitely takes some getting used to. The module goes through each of the nutrients that you'll need to pay attention to, and if you go all the way to the end, there are sample menus and charts of how much potassium, sodium, and phosphorus are in various foods--which can help you plan. You can go through the module on-line or download it and read it.

Keep asking questions of the dialysis_support group, this Board, and your care team. It's important, in the center, though, to be a little sensitive about when you ask questions. When the staff are busy putting people on or taking them off the machines, they may be too distracted to help you. If you say, "I have a question, and when you get a chance, could you please come back--I'll be right here," it lets them know that you want an answer, but you respect their time, and they may be more likely to find you answers.

Also, it helps to ask questions of the right care team member. There's a module of Kidney School on the care team that can help you figure out who does what so you can get answers from the right person. :D

[Black]

Hi Sue

Glad to see you here!! :D

Lorelle

[Cajun Sue]

I did great on my two days off, I didn't even gain as much fluid and I had another bout with low blood presure but I knew what it was this time and got them over fast before it got to bad, but I am still having problems with my graft, she drew some blood out of my arm and there were lots of little clots. She could get it to go at first and they used a brand new dialysiser. She drew out alittle more and then shot some heperin in to graft and told me if that didn't work I was gonna have to go to the hospital to get it cleaned out, she said this happens to new patients with their grafts sometimes, I wondering if it does or it is from them messing it up, I noticed yesterday that it was puffy and this morning, anyway she hooked me back up and it went ok the rest of the time, I am just worried about these clots, can they make their way to your heart. I had a pulmanary imbulism one time so I never want another one. I can't feel a thrill because the stroke left my right hand half numb, I get my husband to do that. I am starting to dread going to the center period. I see my family doctor tomorrow so I am going to see if he can check it out. Oh I wish I could do PD.

[Beth Witten MSW ACSW]

Sometimes dialysis accesses do develop clots and need to be cleaned out. It's good that your husband can check your access if you can't feel it. If he doesn't feel the buzz, it's important to call for help right away so the chances of getting it working right again are higher without having to have it replaced. Grafts are more prone to clotting and other access problems than fistulas. Can you have a fistula? Sometimes with vein mapping a good surgeon can put in a fistula even when others think it's impossible. Keep an eye on the swelling of your graft and ask your husband to pay attention to whether the access area is warm to the touch. Swelling and warmth can be signs of an access infection. If you get an infection, it's important to get treatment right away.

Why can't you do PD? Have you had multiple abdominal surgeries?

If you can't do PD, have you considered home hemodialysis? You and your husband may be concerned about learning to do the needle sticks and taking responsibility for the full treatment, but several weeks of training help to ease those fears and you can always call the home training nurse for questions. People who do home dialysis -- PD and home hemo -- often do better and they and their families feel a greater sense of control than is possible in most dialysis clinics.

[Cajun Sue]

My doctors say I can't do Pd because I am too bad of a diabetic,and I was told I could not have a fistula becasue of my veins being too small. the surgeon that did it was a specailist in doing those. I don't know, I guess I will find out tomorrow if ai will need to have something done with the graft, I would just love to go in and just have a normal dialysis and everything just run smooth.

[Beth Witten MSW ACSW]

Diabetics can do PD and many inject insulin into the bags to counter the sugar in the solution. Does your clinic teach people to do PD? Do they have any diabetics on PD?

[Cajun Sue]

Yes my clicni teaches PD, when I found out that I may have to start dialysis back before October the Neph and PD nurse talked to me about PD, gave me the video and told me to go home and watch it and then my next visit we would talk more about it, I saw my family doctor before then and he said NO I could not do PD because I was too bad of a diabetic and prong to infections, so I go back and tell my Neph what he said and was sent to have a fistula but had to have a graft cause my veins were too little. Well my brother had to start dialysis almost 2 months ago now, this is strange for both of us now on dialysis but anyway he does PD and diabetic and he puts insulin in the bag, he didn't have to use insulin until he started PD. Now I was told today by the nurse that she was going to talk to the doctor about me giving PD a try. If it doesn't work I can always go back to hemo is how I see it. Today was a wonderful dialysis, for the first time everything went great. No low blood pressure, and no clots. I will just wait and see what the doctor says about PD, I don't think my P
c doctor and my Neph get along too good.Sue

[Black]

...Today was a wonderful dialysis, for the first time everything went great. ....Sue

Wow!! :shock: To get the "bugs" out so quickly is wonderful 8)

BTW, if your Doc and Neph don't like each other, I'd bet that the Neph is insecure and suspects that the Doc knows more than he does, or is arrogant and doesn't like being "secong guessed" -- I had that prob. w/ a GP and Surgeon, and at times I felt more like a referee than a patient. :roll: I've learned a lot since then; today I'd probably be telling them both what to do. :lol:

Hang in there, Sue, and show them that a tough Cajun will settle for nothing but the best of care! :lol:

[Beth Witten MSW ACSW]

Glad you had a good dialysis treatment. Sometimes it takes a while for your body to get use do doing dialysis.

I doubt your nephrologist would ever admit it, but I wouldn't be surprised if he/she was unhappy that your family doctor told you that you couldn't do PD. Most people that don't work in dialysis are not as up-to-date about dialysis treatments as nephrologists and renal staff. Many tell patients they shouldn't do home dialysis when those of us who have worked in dialysis know patients do better when they know more and have more control over their illness and treatment. Home dialysis is the height to self-care.

Many primary doctors believe patients can't work on dialysis and tell patients this. They don't know that patients can and do work. Meanwhile, their patient quits his/her job before knowing how it would work with dialysis. When he/she has to live on the little bit of money from disability, the patient becomes depressed, stops taking care of himself/herself, and feels worse physical and emotionally. It's a terrible downward spiral that we're trying to break!

There have been many advances in PD over the years, such as reducing infection rates by finding out if people are carriers of certain germs which can be in the nose and get into the catheter. Antibiotics can clear this up. Patients can use an antibiotic routinely in exit site care. Patients may use the cycler and with fewer connects/disconnects infection rates are down. Also, using a connection device can stops germs before they get into the tube. These are just a few of the innovations that your family doctor may not know about.

Finally, so far as diabetes...Your brother is on PD and has diabetes. Many others are too. So it's obvious that people on diabetes can be on PD. Your brother may have been doing OK with oral drugs for diabetes before but with the extra sugar in the PD bags, injecting insulin in the bags is a good way to keep his blood sugar under control. The goal with diabetes is to keep tight control on blood sugar to prevent complications.

I'll be interested to find out what you learn.

[Cajun Sue]

It has been awhile since I last posted, I have found out alot, I had to have my graft worked on and get the vein opened up and it has been working like a charm, no more clotting, as far as PD, it is a no for me, they all agree it would not be a good idea for me, one thing is I have lung disease and it is hard for me to breath and when you do PD the cavity gets filled with fluid which in turn would press up on my lungs making it even harder for me to breath. I also have a heart condition and right now I have anotehr blocked artery that will need a stent put in so waiting to hear on that. The main problems I am having now with dialysis is my blood pressure going low and having to get it up before I leave the center. I have talked to the PD Nurse many times and she agrees with my Nephs and family doctor. I get infections so easy also. with my lungs I have to be on steroids alots so my sugars go up with this.

[Beth Witten MSW ACSW]

If you've had a better appetite and are eating better than you did before you started dialysis or early in your treatment, you may have gained real weight. If the clinic is trying to get you down to a dry weight that is set too low, you can get dehydrated and this can cause low blood pressure. Low blood pressure can cause an access to clot. Are you taking blood pressure medicine? If so and you take it before you go to dialysis, that can cause blood pressure to be too low during and after dialysis. Sometimes doctors suggest that people not take their BP meds before dialysis. Your dry weight and BP meds schedule (if any) are things to talk about with your doctor.

If you can't do PD, is there any possibility that you could do home hemodialysis?

[Cajun Sue]

You are right on about eating better and I was in the hospital on steroids for a lung infection a few weeks ago and gained weight while I was in there, then they tried to take it off me at the senter and I went real low, then the Neph told them to back off some and now it seems they are not taking enough off me, my ankles are swelling now, I have dialysis tomorow and they said they were gonna try and take alittle more off if they can keep my blood pressure from dropping, it happens in the last hour of treatment, my legs get to hurting so bad I can't stand it. As far as doing hemo at home, I would really need my husband to help and he is scared to death of it, I have had my needle site to start bleeding on the way home and blood shot up out of there and hit the roof of the truck, so he is just too scared of me doing it at home, and my senter does not teach it, only PD at this time, and we are very poor and can't afford to be going far for me to learn it, well I sure couldn't do the needles with my right hand from the stroke and he is too scared to do it so that is out for me. I know life is just so much better when you do it at home but I am just gonna have to settle for in center, I am getting alot more smarter and know how to tell them in there. I even have them cut my speed down too when my pressure is going low, yes I take blood pressure medication but not on dialysis mornings. I use to take two different ones but they took me off one since I have started dialysis. I was getting to where I would go in do my 4 hours and come home with no problems, I was not even sleeping anymore when I got home, and I even had to be wheeled out in a wheelchair at first, then I got to where I could walk with my cane, parts of my right leg are still numb from stroke. I would really just be happy right now coming out feeling good. I am just 51 and I see 70 year olds acting like they just ran a mile coming out. I really have found out that the staff cares a great deal about us, I have watched them long enough now, even with cranky old patients. One that sits next to me, there is no way I could take some of the talk he does to those poor girls, and they just are so patient with him and try to calm him down, he thinks no matter what he should be hooked up before anyone else and most of the time alot are there before he is. but in all most of the patients are very kind and act like they know what is going on with the machines, not like some of the post I have read from other boards about alot of people in centers didn't know what was going on and didn't take control over their treatments. I am just really tired of reading how people in centers are lazy because they dont do dialysis at home, I would if I were healthier and so would some others if they were. Another thing, call it bad Genes or what but no one in my family has lived over 60, that is no grandparents and not my sibblings or parents.

[Beth Witten MSW ACSW]

If you put on more fluid between dialysis sessions, it's hard for the machine to take it all off and people get leg cramps and low blood pressure. Try to limit your weight gain to 2-3 kg (4.4 - 6.6 lbs.). If you can limit the sodium in the food you eat (look for hidden sodium...they even put it in some raw meats like chicken -- look for "enhanced" on the label), this can help you avoid being thirsty. Some medicines make people have "dry mouth" which makes people want to drink. Ask your nurse or doctor if any medicines you're taking do this if your mouth gets really dry. Perhaps they can change you to another drug that doesn't have that side effect. Read the tips from other patients on how to limit your fluid intake or how to satisfy your thirst in the tips section on this website.

We want you to do well and live much longer than others in your family. Even if you can't do home dialysis, you can learn as much as you can and take an active role in your care. Long-term dialysis patients advise staying as positive as possible, asking questions, and being an active partner in care. It sounds like you're well on your way.

[Cajun Sue]

Thank you so much for all your help, you are always here for us. and I don't ever have more then 2 kilos of fluid except when I have to go from Saturday to Tuesday without dialysis and then I have 3 kilos sometimes. If I can just find out why I have been so sort of breath the last two weeks and get that taken care of I would be feeling pretty good, I had test, just waiting for results, I use oxygen and mostly at night but now it is all the time. I also wanted to let everyone know there is a new kidney Yahoo group starting, I have been in some and alot of what is talked about is way over my head, this group will be down to earth if you would like to join go to http://health.groups.yahoo.com/group/LivingwithKidneyDisease/
it is called Living with Kidney Disease. Hugs Sue