First week on hemo - no energy, cramping, limited mobility

[NoskieAJ]

Hi everyone,

I just completed my first week on dialysis. I had 4 days from Friday the 19th to Friday the 26th. First session was with my fistula last 3 days were on a Permacath as the nurse was unable to use my fistula after the first day (says it needs to be raised).

A Couple of notes:

- My BP usually runs high like REALLY high. It's not uncommon to be mid 200's over low 100's and at best would be 190/120. By the last day of dialysis my sitting blood pressure was down to 125/80 - that's a record for me. Today no session it's 120/90.

- They pulled 21 lbs over the 4 sessions. My feet and hands look like someone else's.

So, I have a few questions for the group and any help would be appreciated. Wondering how others have dealt with the same or know what to do. I am receiving plenty of "guidance" from friends but want help from the experts:

1) All 4 sessions I've had cramping in my right leg. I told the nurse that usually happens when I lay back for an extended period so she wrote it off as just that. 1st session was very mild, 2nd was a little more sever and felt like a charley horse, 3rd session it felt like a charley horse and lasted 15 minutes and same on the 4th session but it lasted 30 minutes. Nurse said since I wasn't "screaming in pain" it wasn't due to the dialysis - although I've NEVER had them that long. Thoughts?

2) Each day when I stood up at the end of the session I felt like I was going to pass out. Thursday my standing bp was 69/52, yesterday they couldn't get a reading and had to wheel me out (in a wheelchair that had what looked like feces on the side!). It's been 24 hours since my Friday session ended but I still can't walk more than 20 ft before I have to sit down. As I'm typing this I am seeing stars.

I haven't been given any info on diet, what to eat anything that can help with how I'm feeling. My aunt experienced the same (before she passed away) wiped out feeling and my cousin tells me she needed more potassium. Should I knock back some OJ and a banana?

Thanks

J

[cs65 NKF Ambassador]

Did the staff give you a reason why they had to take so much fluid off so quickly? Have you spoken to your nephrologist yet? When i first started dialysis they did the first few sessions just cleaning my blood and then started pulling liquid to try to find my dry weight (the weight I should carry after excess fluid removal). 1 - You may be having cramping because they have set too high a goal for fluid removal. The nurse should have listened to you and acted to relieve your cramps. There are several ways of doing that including putting you down to minimum, sitting you up to help you put pressure on your leg or having you press against their leg, wrapping the leg in a warm blanket, giving you a little saline solution. 2 - your standing blood pressure may be too low because they removed too much fluid in each session, but it may be due to other factors. Talk to your doctor. 3 - you also should speak to the clinic's renal dietitian about your diet - generally those of us with end stage renal disease on hemodialysis must limit sodium, potassium and phosphorus in our diets and limit fluid consumption around a liter (4 or so cups a day). the dietitian can further advise you about your specifics after they have done your first month's bloodwork - that will tell you what you need more or less of. Please speak up and ask as many questions as you have to the staff- they are supposed to be there to help you and give you guidance. Make sure you tell the staff how you feel at home as well - they may need to adjust your care plan. They can contact your doctor before it is actually time for him to do rounds. The doctor is the one who prescribes your plan of care. Good luck to you and let us know how you are doing, ok?

[NoskieAJ in reply to cs65]

My pressure was something like 280 over 150 the first day so they thought I had too much fluid causing the high BP. The dietitian came in during one of my sessions and said she would get me some in info and then walked out, haven't seen her in 3 days. My fluid intake was the only thing they told me to adjust. I was drinking 100-120 ounces before I started and was told to drop to 32, I did then when I told them my urine output stopped (it was quite normal before dialysis) they bumped me to 60 ounces. I am constantly asking questions but am generally told "we will get to that in future training" if my nurse doesnt have an answer. I've been laying down all day resting with my legs up and haven't got a single cramp so I'm going to be sure to bring that up on Monday when I start cramping.

[KidneyCoach NKF Ambassador in reply to NoskieAJ]

Yes too much fluid removal. Best thing is lower your intake so you can lower your goal to be removed. I rarely get cramps but when I do I sip a mouthful of pickle juice and swish it around my mouth for 15 seconds so the sodium goes right to the bloodstream. You could also take several dill pickle slices and chew/ suck the juice out for 15 or more seconds or chew on one baby dill pickle. What you have today sounds a lot like a "dialysis hangover". Sadly this happens when doing in center txs that are shorter or try to take off fluid too fast. Your blood flow optimally shouldn't run higher than 350. It is hard on the heart. Your kidneys work 168 hours per week. When doing in center they normally only give you between 9 to 12 hours. NOT a good tradeoff. Check out kidneyschool.org it's great. I can also send you a book if you feel like reading a lot. Good news is you'll likely feel better on Sunday. When you go next to dialysis tell them how poorly you felt afterwards and ask them to slow down on how much fluid they remove. Then ask to speak with both dietitian and social worker. Just some ideas. Blessings

[NoskieAJ in reply to KidneyCoach]

Is the pickle juice all you drink all day or only when they pull too much? As for drinking less, they told me to drink more not less.

[KidneyCoach NKF Ambassador in reply to NoskieAJ]

No I only drink 2 mouthsful only when cramping. 2kilos should be the maximum fluid removal per treatment for in center. Go to the UF calculator at homedialysiscentral for more info. Overall the less fluid you take in the less fluid they have to remove and lesser cramping. Limit your sodium and processed foods this will lower cramping episodes. JMHO. Blessings

[KittyMPryde]

Wow!! That is a crazy amount to pull in that short of time. My first sessions they did not pull any because I still urinated. I too had sky high bp. Now that they occassionally pull fluid 1kg to 2 kgs at most my bp is sometimes crazy low. If you take bp meds you might want to drop them. As far as the cramping I have never had any at all so lucky I guess. Hope it gets better for you!

[NoskieAJ in reply to KittyMPryde]

Yeah, lasix and 2 others for BP. Skipped one yesterday afternoon because it was lower

[WYOAnne NKF Ambassador in reply to NoskieAJ]

You really need to call your nephrologist and tell him what is going on at the dialysis center. When they try to get too much fluid off it can make your BP too low and you can actually faint. When I was on dialysis I fainted twice, because now I was dehydrated. When they try to get rid of the fluid you are retaining too quickly you can also have low magnesium & potassium and that causes the cramping.

Call the nephrologist office in the morning and tell them how you are feeling.

Take care.

[NoskieAJ in reply to WYOAnne]

Thanks. He is aware and was just there on Thursday. He is the one who told me they're going slow. I have an office appt this week. Will give me a chance to talk privately.