Complications from dialysis?

[mommacude]

Hubby asked me to post this for him about his mother. I am hoping someone has some insight for us. Thanks!!

My mother is a diabetic who is now suffering from kidney failure and she started dialysis on Dec 24, 2006. Since that time she has been completely miserable and seemingly getting worse with each passing day.

She has almost daily episodes of nausea, vomiting and diarrhea. She has had no appetite and on most days, she is only able to eat chicken broth. Her weight has dropped from 152 lbs (before starting dialysis) to a current weight of 114 lbs in a little more than 30 days. I know that patients typically will lose a lot of weight, but this seems to be happening at an extremely fast pace. Is this something to be worried about?

Her nausea has gotten so bad that she was admitted to the hospital yesterday is currently undergoing tests. I am hoping that someone can answer a few questions about her blood test results.

Before starting dialysis in December, her BUN was >110 and Creatinine was 3.6. The blood test that was performed yesterday (less than 24 hours after completing a dialysis session) showed a BUN of 36 and Creatinine of 3.6. Is it normal for the Creatinine count to still be 3.6 with someone in her condition, or should this be dropping due to dialysis?

Also, is severe nausea/vomiting/diarrhea a common long term side effect of dialysis? I am hearing conflicting stories depending on which of her doctors that I speak with.

My sisters and I terrified that her condition is not being handled properly. Advice from anyone about this will be greatly appreciated.

(hubby's name -- Jim)

[goofynina]

Hi Mommacude (and Jim),   First of all, let me begin by thanking you for becoming a member of ihatedialysis.com and i am so very sorry your mom has to go through what she is going through.  I dont understand why she is having those symptoms AFTER starting dialysis, i was doing all of that before i started and once i started all of that stopped.  I was on Hemo for 3 1/2 years before switching over to PD (best thing that has happend to me yet) and i am feeling so much better.  Is or can PD be an option for your mom?  I am sorry i couldnt offer more help but just wanted you to know that i hope the best for your mom,  Please keep us posted, we care 

Please go to the intro section and tell us a little more about yourselves so we can properly welcome you to the website 



Goofynina/Admin.

[mommacude]

I don't know if PD is an option. . . I'm new to all of this but I don't think it would be because she has had a few abdominal surgeries. She had appendicitis and it caused scarring and so she had surgery to help with adhesions two or three times. She's also had surgery for lung cancer.

[jbeany]

The creatine goal for someone on dialysis is to keep it between 10 and 18, or lower.  The 3.6 is not a bad result.  The Bun level she has is also fine.

The nausea/vomiting, etc.  may or may not be related to the dialysis.  If it was related to her kidney failure, logic says it should be getting better by now.  It's possible she is allergic to something they use on her during dialysis, such as the filters.  Check out this post from neenie, who is having similar problems with her mom.

http://ihatedialysis.com/forum/index.php?topic=2175.0

You may also want to do a google search for diabetic gastroparesis, and see if any of those symptoms match up.  It is neuropathy of the stomach, so that the nerves no longer recognize when the stomach is full, and the process of digestion needs to begin.  Any food eaten tends to remain in the stomach until it becomes overloaded with stomach acid, and it all comes back up.  Not a pleasant, but there are meds to help.  I'm on Reglan for it, and I rarely throw up anymore.

Good luck with finding the source of her problems.

 

[Sluff]

The creatine goal for someone on dialysis is to keep it between 10 and 18, or lower.  The 3.6 is not a bad result.  The Bun level she has is also fine.

The nausea/vomiting, etc.  may or may not be related to the dialysis.  If it was related to her kidney failure, logic says it should be getting better by now.  It's possible she is allergic to something they use on her during dialysis, such as the filters.  Check out this post from neenie, who is having similar problems with her mom.

http://ihatedialysis.com/forum/index.php?topic=2175.0

You may also want to do a google search for diabetic gastroparesis, and see if any of those symptoms match up.  It is neuropathy of the stomach, so that the nerves no longer recognize when the stomach is full, and the process of digestion needs to begin.  Any food eaten tends to remain in the stomach until it becomes overloaded with stomach acid, and it all comes back up.  Not a pleasant, but there are meds to help.  I'm on Reglan for it, and I rarely throw up anymore.

Good luck with finding the source of her problems.

 

Jbeany you are on it.

[mommacude]

Thanks for the replies!  This is mommacude's hubby Jim...

The only thing out of the ordinary that has happened took place after her 3rd dialysis session at a center.  She started vomiting and had bad stomach pain.  During this time she also ran a very low grade fever.  The fever only lasted a day or two at most, but since this happed around new years day, she's been vomiting almost every day of the week. 

When she went to the ER this past Saturday, the "diagnosis" from the ER doctor was that she was dehydrated.  Do you think it could be possible that they're removing too much fluid from her? 

As of today, she has been on dialysis for 37 days.  In that time, she has dropped from 152 lbs to 110 lbs as of today. 

I did read the post from neenie that you sent.  In that I saw where glitter posted some items about her husband.  Her husband's symptoms quite similar to my mom's...   I wonder what happened with her husband?

[glitter]

hi-my husbands story is similar,he went on hemo April 14 2006,and he has spent alot of the last year throwing up with nausea.He eventually threw up until it made his gallbladder become diseased and he had that removed too.he did lose alot of weight but your mom has lost it awfully quickly,my husband was given regaln,Zigan,and phenergan,none of which works great but he has slowed to about three or four vomits a week,there for awhile (6 months easy) he was throwing up almost continuously,he would go in the hospital for two or three weeks while they got a grip on it by medicating him a bunch(,in the hospital there is an anti-nausea drug called azemed that is great,but it is an injection.)then he would come home and withen a day or two he would be violently ill again,and back to the ER we would go.The best place for him seemed to be in the hospital because they could help him a little with drugs. he HAS improved so take heart,alot of the Dr's seemed to think he just needed time,and that getting his kidney removed was just a huge shock to his system.
   The biggest thing is to not give up pressuring the Dr's,I kept taking him over and over to the ER,and their offices,and we also got a gastro Dr. involved with his General and his neph.I had several Dr's throw there hands up-just don't let them,if they can't help you, ask for a referral to another one.And they may say its psychological...which we didn't believe,and eventually they did find an upper GI infection also which they said may or may not be responsible. gee-I hope all this helps you-just don't give up.

[mommacude]

mommacude's hubby Jim again...

I've been searching around trying to find out how the doctor determines someone's dry weight.  Does anyone know? 

The center that my mom goes to tells her "that we don't know what your dry weight is, but we'll know when we hit it".  Does that sound right to any of you?  A statement like that gives me visions of a person just crashing and some tech going "quick, get her on a scale because we just found out her dry weight".

[glitter]

you know when my husband was in the grip of the worst of last year and he lost about 40 lbs over a two month period-I kept telling the techs that he isn't eating,etc. and asking if he needed his dry weight adjusted.I am very new to all this so i didn't really know what was what.I wasn't sure about any of the facts yet,and they just blew me off...finally after we got a new neph,after several times he was in the hospital for it,they realized it and (I kept asking and asking and asking every Dr that saw him)and they lowered his dry weight substantially-they had to give him extra dialysis every day for over a week.At that time they said that could have made him vomit alot too.Even after I asked and asked.It makes you want to pull out all you damned hair in frustration-making them listen is so hard!

[jbeany]

mommacude's hubby Jim again...

I've been searching around trying to find out how the doctor determines someone's dry weight.  Does anyone know? 

The center that my mom goes to tells her "that we don't know what your dry weight is, but we'll know when we hit it".  Does that sound right to any of you?  A statement like that gives me visions of a person just crashing and some tech going "quick, get her on a scale because we just found out her dry weight".

Unfortunately, figuring dry weight is a lot more art than science.  It's all guess work, especially at the beginning.  Unfortunately, the best solution is for you to figure out her dry weight yourself, and start insisting on what YOU want her fluid goals to be.   Keep track of her numbers in and out each dx session, and compare the goals reached to how she feels.  Does she feel better leaving a little heavier?  I can tell in my hands and feet when I need more fluid off.  I'm not talking about leaving with liters of fluid on, but carrying a half a liter over what they want her dry weight to be might make all the difference in the world in how she feels at home.  Okarol has posted on here many times about how frustrated she was with her daughter's dx techs trying to strip fluid off that wasn't necessary, and leaving Jenna sick for the rest of the day.  It is very possible to become dehydrated if they are pulling too much fluid off.  It is your right to set your own fluid goals - don't let them tell you otherwise!

[DeLana]

Hubby asked me to post this for him about his mother. I am hoping someone has some insight for us. Thanks!!

My mother is a diabetic who is now suffering from kidney failure and she started dialysis on Dec 24, 2006. Since that time she has been completely miserable and seemingly getting worse with each passing day.

She has almost daily episodes of nausea, vomiting and diarrhea. She has had no appetite and on most days, she is only able to eat chicken broth. Her weight has dropped from 152 lbs (before starting dialysis) to a current weight of 114 lbs in a little more than 30 days. I know that patients typically will lose a lot of weight, but this seems to be happening at an extremely fast pace. Is this something to be worried about?

Her nausea has gotten so bad that she was admitted to the hospital yesterday is currently undergoing tests. I am hoping that someone can answer a few questions about her blood test results.

Before starting dialysis in December, her BUN was >110 and Creatinine was 3.6. The blood test that was performed yesterday (less than 24 hours after completing a dialysis session) showed a BUN of 36 and Creatinine of 3.6. Is it normal for the Creatinine count to still be 3.6 with someone in her condition, or should this be dropping due to dialysis?

Also, is severe nausea/vomiting/diarrhea a common long term side effect of dialysis? I am hearing conflicting stories depending on which of her doctors that I speak with.

My sisters and I terrified that her condition is not being handled properly. Advice from anyone about this will be greatly appreciated.

(hubby's name -- Jim)

Welcome to the site! You have already received good advice, maybe I can add to it.

I'm a dialysis nurse (5 years in a center, now in a hospital) and can tell you that it is definitely not normal to have the symptoms you describe as a result of dialysis.  Nausea and vomiting can occur if a patient's blood pressure decreases suddenly and severely during a treatment; however, since the patient is monitored by staff this should happen very rarely (nurses intervene early by adjusting the fluid removal target or giving saline if blood pressure drops).  Nausea can be a side effect of end stage renal failure, however, starting dialysis should help the person to feel better!  It also doesn't sound like a reaction to the dialyzer and/or blood lines; you would expect allergy symptoms (such as itching, hives, mild fever), and in any case, it is rare.  Diabetic gastroparesis is a possibility (as mentioned by pp).  And no, the symptoms she is experiencing should not be a long term side effect of dialysis.

What is very abnormal and worrisome is the significant weight loss!  This is most definitely not expected and needs to be addressed.  It has nothing to do with tyring to find the dry weight, she could not possibly have had that much fluid on!  Putting all of this together, a thorough work-up is definitely indicated.

To arrive at the "estimated dry weight" (EDW) you cautiously "test the patient down", i.e., take off another half quart or so each treatment until you are fairly certain that you cannot remove anymore without causing cramping and/or hypotension (low blood pressure); at this point, the patient should not have any significant edema (swelling, especially evident in the ankles).  We try not to cause any cramping, usually you get an idea that the EDW is reached based on the blood pressure.  After only a few dialsyis treatments the EDW should be established.  It is important to note that EDW constantly changes, but usually not significantly.  If a patient loses a lot of body weight, as your mother has, EDW will of course need to be adjusted.  Nurses also need to consider fluid loss due to nausea, vomiting and diarrhea when deciding on the fluid removal (ultrafiltration) goal.  Experienced dialysis nurses know how to take all of this into account, and sometimes the physician will specify what s/he wants the EDW to be.

I'm sorry to hear your mother is in the hospital, however, there she has the best chance of getting her condition evaluated and treated.  Please let us know how she is doing and what you find out.

All the best,

DeLana   



 

[mommacude]

Thanks for all of the wonderful advice.  I've armed my mom and dad with a list of questions to ask the neph when he makes rounds on Monday morning.

My mom's primary caregiver is my father.  He's 73 and unfortunately his memory is going fast (neurology consult is in the works).  He does his best to stay on top of things, but my sisters and I are afraid that his condition might cause problems for her.  We're trying to get as much information as possible about all of this.  We're also planning on always having one of us siblings go to her neph appointments. 

They performed an ultrasound on her abdomen today to rule out any "unknown" conditions that might be causing her nausea.  I'm not sure if Diabetic gastroparesis can be detected this way???  The ultrasound report that they received tonight did not show any problems.  I did speak with her about Diabetic gastroparesis tonight after reading jbeany's post and I don't believe this could be the cause since her symptom don't seem to match this.

I'm hoping that it is just a case of them removing too much fluid because she did mention tonight that she has had some cramping.  I guess that I'm just hoping for an "easy fix".  She's already talking about how she cannot continue if this is how it is going to be.

[okarol]

Hi Jim,
So sorry about your mom. Did you say what caused her kidney failure? This may help to
solve the puzzle. Does she urinate much? My daughter urinated a lot, but the center
would often take fluid off, even if she was below her dry weight! It would cause her
to be nauseous, lethargic, confused and she would have to sleep it off. I finally would
go in and stand there until the charge nurse would manually reset the setting to override the
default fluid removal. Sometimes Jenna would still be below and they would add saline
back to bring her up. Since your mom is continuously losing weight it seems nearly
impossible to come up with a dry weight. If she doesn't have puffy fingers or ankles,
I would be very careful about letting them take off fluid. Dehydration is bad news.
Have they done a 24 hour urine clearance test?
I wish you luck and hope you find some answers soon!

[mommacude]

Okaro - Thanks for much for the information!  I sincerely hope that you're Jenna doing well.  Someone pointed to me to some of your posts last night and I read your story about all that you did and had to endure to find you daughter a donor.  Your daughter is so fortunate to have someone like you who would not let the "system" dictate her condition/treatment! 

My mom's KF is a result of diabetes.  She has been a diabetic since I was a small child (I'm now 43).  From what I know, she does not urinate all that much, even before she started dialysis.  I know that they did a 24 hour clearance test back in December, but I can't remember the results of that now. 

Also, she has NO puffiness whatsoever.  In fact, she looks horrible - loose skin just hanging off of her bones. 

She has had problem with low blood pressure after after a few treatments and they kept her at the center for a while.  Made her drink some extremely salty broth to bring her BP up.  She monitors her BP at home and sometimes it is low and then other times it spikes to a reading like 210/50. 

At home, she is very lethargic and unsteady on her feet, so I do believe that they already have taken way too much fluid off.   I'm passing along all of the great information that I've received from all of you to my father, so he can question her doctor.  I will definitely let everyone know what the outcome is.

[mommacude]

I should also problem add some of the other illnesses that she currently has or has gone through to help complete the picture. 

About 20 years ago, she went almost two days with a ruptured appendix (yes she has a high pain tolerance).  This later caused big problems with her abdominal muscles and hernias just pouring through.  They connected some sort of mesh material to her abdominal muscles to help with the hernias. 

She then was diagnosed with lung cancer and had the lower left lobe removed.  No chemo though.  Has been cancer free for 16+ years. 

Now she has COPD and is on oxygen.  The treatment for this started when she was hospitalized this past December. 

Her cardiologist also says that she has diastolic heart failure along with her hypertension.

[mommacude]

My mom met with her doctor and his PA this morning while undergoing dialysis in the hospital.  They agreed that she was dehydrated and way below her dry weight and have made adjustments to remove less fluid.  You'd think that they would monitor this and when someone comes in for their next treatment and says that I've been vomiting for the past 48 hours and then do the same thing they did the previous session.  GRRRR!!!!!

[glitter]

My mom met with her doctor and his PA this morning while undergoing dialysis in the hospital.  They agreed that she was dehydrated and way below her dry weight and have made adjustments to remove less fluid.  You'd think that they would monitor this and when someone comes in for their next treatment and says that I've been vomiting for the past 48 hours and then do the same thing they did the previous session.  GRRRR!!!!!

you would think,wouldn't you? Its frustrating not to know the right questions to ask too-thats why this site is so great.

[DeLana]

My mom met with her doctor and his PA this morning while undergoing dialysis in the hospital.  They agreed that she was dehydrated and way below her dry weight and have made adjustments to remove less fluid.  You'd think that they would monitor this and when someone comes in for their next treatment and says that I've been vomiting for the past 48 hours and then do the same thing they did the previous session.  GRRRR!!!!!

The hospital dialysis nurses should be able to figure out what her "real" dry weight (EDW) is; keep in mind, however, that they cannot get her that low when she returns to the center because she will be wearing a lot more clothes!  Actually, in the center patients should be a left just a bit above their EDW (which, as described before, isn't that easy to determine; the clothes you wear can make a big difference!) Giving salty soup or broth after treatment isn't the ideal method to bring up the BP; instead, they should not even disconnect her from the machine until they have a good standing blood pressure, and no cramping!

What is the latest?  Is your mother still in the hospital?

I hope she is doing better.

DeLana 

[mommacude]

She was released from the hospital after dialysis on Jan 29 and felt great Monday and Tuesday.  She went to dialysis at the center on Wednesday and then started feeling worse on Thursday.  Then on Friday after dialysis she started feeling worse and the downhill trend continued into the weekend with nausea and vomiting much worse. 

We have a cousin who is a fairly prominent orthopedic surgeon in Dallas and he recommended that we switch doctors and see some that he knows.  He's set her up with a new nephrologist, cardiologist and vascular surgeon that are all working together to do what is best for her.  They currently have her in a hospital in Dallas and running all sorts of tests. 

One test did show a significant blockage in her abdominal aorta.  I don't know what this might be contributing to, but the doctors are now looking at "everything".

[angieskidney]

you know when my husband was in the grip of the worst of last year and he lost about 40 lbs over a two month period-I kept telling the techs that he isn't eating,etc. and asking if he needed his dry weight adjusted.I am very new to all this so i didn't really know what was what.I wasn't sure about any of the facts yet,and they just blew me off...finally after we got a new neph,after several times he was in the hospital for it,they realized it and (I kept asking and asking and asking every Dr that saw him)and they lowered his dry weight substantially-they had to give him extra dialysis every day for over a week.At that time they said that could have made him vomit alot too.Even after I asked and asked.It makes you want to pull out all you damned hair in frustration-making them listen is so hard!

When I was very sick the summer of 2005 I lost so much weight but had so much fluid on me that they didn't know my dry weight neither and I was getting sick for months. Now I don't get sick at all.

mommacude's hubby Jim again...

I've been searching around trying to find out how the doctor determines someone's dry weight.  Does anyone know? 

The center that my mom goes to tells her "that we don't know what your dry weight is, but we'll know when we hit it".  Does that sound right to any of you?  A statement like that gives me visions of a person just crashing and some tech going "quick, get her on a scale because we just found out her dry weight".

They find the dry weight by when the Blood pressure drops or other signs of dryness shows up like cramps or feeling dizzy.

Also with that fast of weight loss, is she losing handfulls of hair? I did. Signs of malnutritian.

Also I was getting the runs as well as puking when I had too much fluid on me. You should learn what are signs of dehydration and what are signs of edema.

Her cardiologist also says that she has diastolic heart failure along with her hypertension.

Wow I had to look that up because I never heard of that before. Not good

http://www.chfpatients.com/faq/dhf.htm

[mommacude]

I just wanted to post an update on my mom. 

The new nephrologist has been very good.  Her first dialysis session last week in the hospital he said that "we're not going to remove any fluid because I don't see where you have ANY excess fluid".  So that started out well. 

The new cardiologist did not find anything significant or new, but he did change her blood pressure medicine which didn't really seem to do much. 

Most of the past week was uneventful.   They did numerous scans and tests looking at a number of things. 

On  Thursday last week she had a period of a 2-3 hours where she had severe abdominal pain along with nausea and diarrhea.  This went ""away" without the staff doing much of anything. 

The severe pain and nausea/diarrhea returned Friday morning, so they ran some additional tests to check her digestive track and brought in a GI.  By the end of the day, nothing had been found, but the pain/nausea/diarrhea continued. 

Late Friday night or early Saturday morning, her abdominal pain intensified.  The vascular surgeon believed that she has some blocked intestinal arteries, so he performed an angiogram.  He found a blockage in her celiac artery which he was able to open up with a stint.  He also found a complete blockage in her superior mesenteric artery.  He attempted to get a stint into this blockage for about 1.5 hours without success, so they took her to the OR to perform a bypass. 

When they opened her up, her intestines were in horrible shape from lack of adequate blood flow (mesenteric ischemia).  They quickly performed the bypass and a good percentage of her intestines profused well.  They did have to remove about 2 feet of her small intestine.  To ensure they removed all of the "dead" tissue, they left her open, sedated and on a ventilator.  The surgeon went back in on Sunday afternoon and had to remove about 12 additional inches of her intestine.   Then he reconnected everything and closed her up.  Also, sometime before this procedure began, her right lung collapsed so they had to insert a chest tube. They kept her sedated and on the ventilator all day Sunday.

Today (Monday), they've been slowing reducing the sedatives and are attempting to wean her off of the ventilator.  She's currently undergoing dialysis in her ICU room and if all goes well, they're plan on "waking" her up and removing the ventilator some time this evening.

[jbeany]

 

Thanks for the update - sorry your mom is having such a tough time.

[nextnoel]

Good to hear from you again, but what a horrible time your mom is having!  My thoughts & prayers are with her.

[glitter]

sorry your mom is having such a hard time......don't forget to take care of yourself too

[okarol]

  awww poor mom!
I pray things improve soon!