Hey everyone...new here. :)

[SunshineOfHope2]

Hi everyone!

I have been trying to get in here and I guess I had a problem with my password but here I am!

Here is my story: I was having strange symptoms that progressively got worse. I had no idea what was wrong with me and typically (me) put off going to do the doctor...I was having severe leg muscle pain (later found to be rabdomyalsis) which the muscle fibers broke down and were passed through my kidney (I only have one) which then clogged up the kidney. I was also having weakness in my legs when I tried to walk and they felt like jelly. (I thought it was the thyroid!) but the symptoms pressed on until everything tasted like metal and then I did not want to eat because of it and then drinking water caused the same strange taste. I pretty much stopped eating and drinking for 5 days and the toxins were confusing my brain into doing something about it! But finally I went to the doc and I could not climb on the exam table I was so weak. Doc asked a bunch of questions and said something about doing a kidney panel. I thought to myself, kidney? Really? So the tests came back and he called me (that scared me) and told me to go to the hospital immediately! My creatinine was 13! And a bunch of numbers were sky high...The docs believe this was caused from a statin medication that has rare side effect of causing "rabdo"

I went to the hospital and they admitted me immediately and started IV bags thinking my severe dehydration (before they would have me go on dialysis) would be helped with IV bags but the next day the neph doc told me I needed dialysis and I had to have a port put in my neck. He said we had no time to wait. He said I was in kidney failure. They put the port in my neck while I was awake! That was creepy! 

I have finally accepted dialysis and that was not easy! I cried so much and did not want it. But I had to accept it. My biggest problem is low blood pressure which drops to 91 and then I feel like everything is going black and I start sweating. This happens quite a bit of the time. They did talk about doing some adjusting and another choice was taking a pill to up my blood pressure but absolutely not! Not unless it's the only other choice.

Glad I am finally here. I have been on dialysis 2 months now. 

Nice to meet everyone!

[MooseMom]

I'm certainly glad you got both your password AND your diagnosis sorted out!  Welcome to IHD!

Your story is frightening!  Creatinine at 13?     And what unpleasant symptoms!  Muscle fibers breaking down and passing through your kidney and clogging it up?  Ewww!  LOL!

May I ask why you have only one kidney?  I'm sure that fact complicated things!

Anyway, we are glad you are here!  Thanks so much for joining!

[PrimeTimer]

   Welcome, SunshineOfHope2!  Sounds like they are figuring out your dry weight versus how much fluid to remove from you. Takes a few treatments so yes, your BP might go up/down and make you feel lousy but once they figure it out you will be feeling muuuch better.

[SunshineOfHope2]

I'm certainly glad you got both your password AND your diagnosis sorted out!  Welcome to IHD!

Your story is frightening!  Creatinine at 13?     And what unpleasant symptoms!  Muscle fibers breaking down and passing through your kidney and clogging it up?  Ewww!  LOL!

May I ask why you have only one kidney?  I'm sure that fact complicated things!

Anyway, we are glad you are here!  Thanks so much for joining!

Hi

Hi MooseMom! Yes. That is what the doc said. He said it was at 13 but needed to be at 0.1-1.0 (something like that. I know the C level was correct but the normal number is supposed to be close to what I wrote here, I hope!

 I felt like I was dying physically. (I read where they say you just go into a coma and that's it.....) but I never "thought" I was going to die but the mind plays tricks with the toxins. (hope that makes sense). The scary thing is I did not seem to understand how serious it was until I stopped drinking water....Laying under a blanket at home, and wondering about "laundry" when I needed to be at the hospital. I live alone so I can imagine if I had a hubby or a roommate, I am sure they would have been screaming at me to go to the doc! 

My other kidney was removed in 2005. I had a tumor on it but it was found later not to be cancer. (wished I would have gotten a second opinion, that way maybe the other doc would have said it was not cancer but the regular neph-doc said it looked like cancer) and because I was seeing him for bladder issues I trusted what he said. 

Thanks again

Oh, the intro asks where I am from: I am female and live in South Carolina.

[SunshineOfHope2]

  Welcome, SunshineOfHope2!  Sounds like they are figuring out your dry weight versus how much fluid to remove from you. Takes a few treatments so yes, your BP might go up/down and make you feel lousy but once they figure it out you will be feeling muuuch better.

Hi Primetimer!

So, it sounds like I won't feel awful with the low BP forever? I know the 10 D treatments I had in the hospital, I mostly had that problem as well... At the D center where I go now  it is more comfortable and I stress less when the nurse tells me my BP is near normal (I usually have a good D day) but it it's 105 BP walking in the door, I know I might have a struggle and I hate feeling strange like that with the sweating and feeling dizzy.

Thanks again, 

[PrimeTimer]

  Welcome, SunshineOfHope2!  Sounds like they are figuring out your dry weight versus how much fluid to remove from you. Takes a few treatments so yes, your BP might go up/down and make you feel lousy but once they figure it out you will be feeling muuuch better.

Hi Primetimer!

So, it sounds like I won't feel awful with the low BP forever? I know the 10 D treatments I had in the hospital, I mostly had that problem as well... At the D center where I go now  it is more comfortable and I stress less when the nurse tells me my BP is near normal (I usually have a good D day) but it it's 105 BP walking in the door, I know I might have a struggle and I hate feeling strange like that with the sweating and feeling dizzy.

Thanks again, 

If they can, have them turn the machine so you can watch your BP numbers during dialysis. Learn your limits and where your numbers are at that make you feel lousy and grab their attention quick if you start feeling lousy. They don't want you to crash or puke any more than you do so speak up right away. Always wear the same clothes/shoes for weigh-in purposes. You can read tons more in the General Discussion section on the site and don't be shy to start a new thread to ask questions. You'll find that you are in good company here.

[iolaire]

Welcome to the group.

[MooseMom]

OMG, they removed your kidney thinking a tumor was malignant when in fact it was not?  I don't know what to say to that.

Prime Timer is right in pointing out that there are loads of people here who are all to willing to help with any questions you may have.  If you don't have any questions but just need to rant or have a bit of a pity party, that's just fine.  We've all shed a lot of tears.

[Charlie B53]

Welcome to IHD!

You got off to a scary and difficult start, however you have come to the right place to learn more.

It can take a bit if time but you will quickly learn you MUST learn how to eat and drink much more responsibly on Dialysis.   Fluids are in everything, not just the liquids we drink, but all foods contain water with some far far more than others.

Large take-offs realy MUST BE controlled, keeping to a minimum can make the shock and after effects of treatments much more bearable.

This is going to take time, effort, and study.

There is no 'magic' number.  As individuals we may be quite similar, but we are NOT the same.    What may be perfectly fone for one may cause terrible cramps in another person.    You are going to have to learn so much more about how YOU respond to treatments, than make those personal adjustments in your own diet and fluid control that work best for you.

This is why we are all here.  Our end of the needle is tough enough but having each other to lend our own experiences is truly a Heaven send Blessing.    I don't doubt that many of us couldn't have made it without the group.

Learn to use our Search feature, Ask questions, Stay Careful.

Charlie B53

[Cupcake]

I'm scared to ask--which statin caused that? My cholesterol dropped dramatically after my transplant and so I thought the cardiologist would decrease/stop it, but she's greedy and wants to keep my LDL below 70. I'm on Crestor.

Your name says you have a positive outlook and that will take you far. Best of luck. Im vacationing in Hilton Head right now-love it here!

[SweetyPie]

I have been on dialysis for 8 years 6 on pd and 2 hemo. Hemo was hard i had the same symptoms of sweating and feeling awful. My blood pressure who shoot up to like 160s yes.. my body is weird and the nurse thought i had fluid but no my body was going in shock. It took a month and the help from my friends here to tell me they are pulling TOO MUCH TOO FAST. Try profile 5 or adjusting ur weight. My blood pressure now remains low. I always had low blood pressure. I fresk out the techs because its at 70 and i say im fine. Blood pressure meds don't help the way you feel

[SunshineOfHope2]

  Welcome, SunshineOfHope2!  Sounds like they are figuring out your dry weight versus how much fluid to remove from you. Takes a few treatments so yes, your BP might go up/down and make you feel lousy but once they figure it out you will be feeling muuuch better.

Hi Primetimer!

So, it sounds like I won't feel awful with the low BP forever? I know the 10 D treatments I had in the hospital, I mostly had that problem as well... At the D center where I go now  it is more comfortable and I stress less when the nurse tells me my BP is near normal (I usually have a good D day) but it it's 105 BP walking in the door, I know I might have a struggle and I hate feeling strange like that with the sweating and feeling dizzy.

Thanks again, 

If they can, have them turn the machine so you can watch your BP numbers during dialysis. Learn your limits and where your numbers are at that make you feel lousy and grab their attention quick if you start feeling lousy. They don't want you to crash or puke any more than you do so speak up right away. Always wear the same clothes/shoes for weigh-in purposes. You can read tons more in the General Discussion section on the site and don't be shy to start a new thread to ask questions. You'll find that you are in good company here.

Thanks Primetimer! I like the idea of having them move the machine. I know they can, if I recall it's on wheels and they move it around to adjust the chairs. Today I had a brief bad spell (BP dropping) but it was very brief and went back to normal. I was looking at the nurses and getting ready to call one over and things got better. One did come over but I told her I had a brief episode (usually it gets bad and they have to give me saline, raise my feet higher and try talking to me, reassuring me that they are trying to help me). I wear the exact shirt and pants and take my shoes off. I do have a dry weight they told me the number today and they tried explaining how much they know to take off. I will start a new thread soon!

Thanks again. 

[SunshineOfHope2]

Welcome to the group.

Thanks! 

[SunshineOfHope2]

OMG, they removed your kidney thinking a tumor was malignant when in fact it was not?  I don't know what to say to that.

Prime Timer is right in pointing out that there are loads of people here who are all to willing to help with any questions you may have.  If you don't have any questions but just need to rant or have a bit of a pity party, that's just fine.  We've all shed a lot of tears.

I know. I was speechless when I saw the path report. After that, I could not look at my old neph-doc in the eye without getting upset. I did see legal advice but was told because there was a tumor, that it might be difficult to persue (never did understand that logic) Thanks for your kindess !

[SunshineOfHope2]

Welcome to IHD!

You got off to a scary and difficult start, however you have come to the right place to learn more.

It can take a bit if time but you will quickly learn you MUST learn how to eat and drink much more responsibly on Dialysis.   Fluids are in everything, not just the liquids we drink, but all foods contain water with some far far more than others.

Large take-offs realy MUST BE controlled, keeping to a minimum can make the shock and after effects of treatments much more bearable.

This is going to take time, effort, and study.

Hey Charlie, I am fanatical about my renal diet. Even my dietician says to allow myself a half of banana sometimes but I am too scared to try that. I strictly follow the Do's and Don'ts and my dietician reads off my levels (related to how I am eating) and says my reports are fantastic and he only wishes everyone would follow their renal diet. He did say I am too hard on myself and am allowed a small treat from time to time. The water thing, well I don't drink anything but water and am careful how much I take in and the foods I eat that contain water. I have lost 20 pounds after being in the hospital 3 weeks. I was so stressed in the hosptial and the food tasted flavorless and awful but I made my self swallow it because I knew nutrition was going to be key in feeling better.

There is no 'magic' number.  As individuals we may be quite similar, but we are NOT the same.    What may be perfectly fone for one may cause terrible cramps in another person.    You are going to have to learn so much more about how YOU respond to treatments, than make those personal adjustments in your own diet and fluid control that work best for you.

This is why we are all here.  Our end of the needle is tough enough but having each other to lend our own experiences is truly a Heaven send Blessing.    I don't doubt that many of us couldn't have made it without the group.

Learn to use our Search feature, Ask questions, Stay Careful.

Charlie B53

Hey Charlie, I am fanatical about my renal diet. Even my dietician says to allow myself a half of banana sometimes but I am too scared to try that. I strictly follow the Do's and Don'ts and my dietician reads off my levels (related to how I am eating) and says my reports are fantastic and he only wishes everyone would follow their renal diet. He did say I am too hard on myself and am allowed a small treat from time to time. The water thing, well I don't drink anything but water and am careful how much I take in and the foods I eat that contain water. I lost 20 pounds after being in the hospital 3 weeks. I was so stressed in the hosptial and the food tasted flavorless and awful but I made my self swallow it because I knew nutrition was going to be key in feeling better.

I'm the type of person who if under stress, my appetite takes a dive. Also if I am sad or depressed, down my appetite goes!

[SunshineOfHope2]

I'm scared to ask--which statin caused that? My cholesterol dropped dramatically after my transplant and so I thought the cardiologist would decrease/stop it, but she's greedy and wants to keep my LDL below 70. I'm on Crestor.

Your name says you have a positive outlook and that will take you far. Best of luck. Im vacationing in Hilton Head right now-love it here!

It was Crestor! They said 10% of people with have that rare side effect of rabdomyalis. I unfortunately was one of them. 

[SunshineOfHope2]

Rhabdomyolysis is a serious syndrome due to a direct or indirect muscle injury. It results from the death of muscle fibers and release of their contents into the bloodstream. This can lead to serious complications such as renal (kidney) failure. This means the kidneys cannot remove waste and concentrated urine.

I finally looked this up. I need to understand more about what happened. They tested me for it and said I tested positive for "rabdo" 

[UkrainianTracksuit]

For athletes that do lots of heavy training and do not keep adequately hydrated, rhabdomyolysis is a risk. For example, if you’re in a 12 round fight, and only get water from your corner between rounds, it happens more acutely. Learned all this from my husband since he used to train hard/compete and now, for pleasure, still a risk. So, we actively watch for this at home, quite commonly!

I know that’s really different than your situation which is really a sad shame. But you have a great attitude and showing what you put up with before medical help shows you’re a fighter.

[SunshineOfHope2]

For athletes that do lots of heavy training and do not keep adequately hydrated, rhabdomyolysis is a risk. For example, if you’re in a 12 round fight, and only get water from your corner between rounds, it happens more acutely. Learned all this from my husband since he used to train hard/compete and now, for pleasure, still a risk. So, we actively watch for this at home, quite commonly!

I know that’s really different than your situation which is really a sad shame. But you have a great attitude and showing what you put up with before medical help shows you’re a fighter.

When I was lying in the hospital bed, the doc asked me if I ran a great distance in miles? I said no. I have not even been in a gym or on a treadmill in over 6 months. He then said Rabdo. I asked what that was? I also told him my leg muscles hurt really bad but I had no idea why they both hurt. He talked about the medicine Crestor breaking down the muscle fibers and those fibers tried to move through my kidneys and got clogged up! I finally had an answer as to why I went downhill.

I am a very positive person. I actually don't "hate dialysis" I just fear the things I have seen at the D center where I go. There was a full cardiac arrest one day and the next day a lady had to go to the hospital because her BP dropped and they could not get it back up. I always hope I do well in D and I always eat well. I am not sure what else I can do. 

[UkrainianTracksuit]

With dialysis, you learn as you go.  Take the best care of yourself all the time, follow a good renal diet and watch your fluid restrictions. A good basis to it all! Most importantly, be an informed patient and a strong advocate for yourself. There are going to moments you can't control but they are a part of the process/journey. I'm on the transplant side of it all now but HD was rather okay.  And like people said, there is a community here for questions or ranting.

The early symptoms of rhabdo are so mild and subtle that you don’t really realize it’s happening until urine output decreases and pee is almost black. It sounds gross but guys in some particular sports post pics of their gnarly coloured pee on social media.

At least at home, since we’re aware that it happens, we watch for the early signs. But again, it’s because we know about it, and someone who wouldn’t even dream about having it, would just think they were just under the weather. It’s something that can easily get bad and cause damage, as you sadly experienced. My husband's doctor does a quick skeletal muscle exam to check for tenderness/soreness all over. Like, legs, abs, shoulders, arms... not exactly sure what he feels for muscle fibre breakdown or maybe just looking for wincing!

The soreness you experienced is often the precursor. Like, if someone typically does the same sort of workout and has no sort of pain, yet, now there is lingering soreness, it perks some interest. Fatigue, feeling sick, barfing, weird as hell bruising, total weakness. Things you suffered! But there are so, so, so, so, so many other causes! Like, don't get struck by lightning! Zap, zap, zap rhabdo!

Years ago (I want to say 7?! It's in the photo album of life pre-me) husband had a case of rhabdo but because he had coaches etc, it got picked up early. Just a few days in the hospital with IV fluids. No kidney damage afterwards. Now at home, at first signs, it’s just lay down and get fluid into him. He takes bicarbonate tablets too for blood alkaline/acidity reasons.

I know in your case it is comparing apples to oranges. It’s just rhabdomyolysis is something we actually talk about since we’re kind of a kidney obsessed home.

[Paul]

 
Hello SunshineOfHope2, welcome to the site.

Low BP can be terrifying, I remember passing out because of it, and when I came round I felt so bad I thought I was dying. The good news is that at the moment they are probably putting pretty severe dialysis through you to get your figures back to a safe level. Once they have got you there, they will have more lee way to adjust your dialysis and you should find it easier and hopefully your BP should not drop so much.

[Charlie B53]

I'm scared to ask--which statin caused that? My cholesterol dropped dramatically after my transplant and so I thought the cardiologist would decrease/stop it, but she's greedy and wants to keep my LDL below 70. I'm on Crestor.

Your name says you have a positive outlook and that will take you far. Best of luck. Im vacationing in Hilton Head right now-love it here!

It was Crestor! They said 10% of people with have that rare side effect of rabdomyalis. I unfortunately was one of them. 

I must be one of that 10% as of the three statins I can only take the weakest,  Prevastatin.   Either of the others and I get weak, cramped, achy, and sick within only a few days.

[SunshineOfHope2]

With dialysis, you learn as you go.  Take the best care of yourself all the time, follow a good renal diet and watch your fluid restrictions. A good basis to it all! Most importantly, be an informed patient and a strong advocate for yourself. There are going to moments you can't control but they are a part of the process/journey. I'm on the transplant side of it all now but HD was rather okay.  And like people said, there is a community here for questions or ranting.

The early symptoms of rhabdo are so mild and subtle that you don’t really realize it’s happening until urine output decreases and pee is almost black. It sounds gross but guys in some particular sports post pics of their gnarly coloured pee on social media.

At least at home, since we’re aware that it happens, we watch for the early signs. But again, it’s because we know about it, and someone who wouldn’t even dream about having it, would just think they were just under the weather. It’s something that can easily get bad and cause damage, as you sadly experienced. My husband's doctor does a quick skeletal muscle exam to check for tenderness/soreness all over. Like, legs, abs, shoulders, arms... not exactly sure what he feels for muscle fibre breakdown or maybe just looking for wincing!

The soreness you experienced is often the precursor. Like, if someone typically does the same sort of workout and has no sort of pain, yet, now there is lingering soreness, it perks some interest. Fatigue, feeling sick, barfing, weird as hell bruising, total weakness. Things you suffered! But there are so, so, so, so, so many other causes! Like, don't get struck by lightning! Zap, zap, zap rhabdo!

Years ago (I want to say 7?! It's in the photo album of life pre-me) husband had a case of rhabdo but because he had coaches etc, it got picked up early. Just a few days in the hospital with IV fluids. No kidney damage afterwards. Now at home, at first signs, it’s just lay down and get fluid into him. He takes bicarbonate tablets too for blood alkaline/acidity reasons.

I know in your case it is comparing apples to oranges. It’s just rhabdomyolysis is something we actually talk about since we’re kind of a kidney obsessed home.

Thanks! I am pretty good about the water intake. My dietician told me I can drink up to a liter a day.(?) Seems like a lot. I don't think I drink quite that much. I love water! I always have. The soda thing: I no longer buy that and there is none left in my house. Just a big jug of crystal clear water.  I also keep an emergency pack of food in my trunk but it's only half way complete. It contains applesauce cups and things like that. I think all kidney patients should have an emergency stash of foods they can eat, considering the weather storms, hurricanes and such.  I gave my neighbor tons of food in my cabinets and threw everything in my frig away. Costly yes. But the fridge stuff had been in there 3 weeks (in hospital) and needed to be dumped .

I keep an eye on the rabdo. I had a few sore muscles today but it's so very differerent than the rabdo. They feel sore in a hurt myself sort of way whereas the rabdo it felt deeply aching and the muscles in the legs were very, very sore where I could barely sit on the toilet (I wondered why that was at the time...) If I continue to feel these sore muscle pains I will tell them Monday. That way if they wanted to test for it again, I suppose they could. My understanding is that my muscles are damaged and weak and doc said that wont get better. The pain went away but walking is shaky and she said I have damaged muscles now. Thats the difference between your hubby being noticed with his rabdo because he had training coaches. I was so in the dark about what it was and did not say anything! That almost proved fatal by keeping my complaints to myself.

Thanks again! 

[SunshineOfHope2]

Hello SunshineOfHope2, welcome to the site.

Low BP can be terrifying, I remember passing out because of it, and when I came round I felt so bad I thought I was dying. The good news is that at the moment they are probably putting pretty severe dialysis through you to get your figures back to a safe level. Once they have got you there, they will have more lee way to adjust your dialysis and you should find it easier and hopefully your BP should not drop so much.

Hiya Paul I find the low BP thing the most frustrating and frightening thing about D. You are damned if you do and damned if you don't do Dialysis. So you can't win! Just kidding. You guys have given great advice! That is great to know I won't have to take a scary dive down with the BP forever! The other thing is the darn cramping. There was a man today who was yelling it hurt so bad and it brought tears to my eyes.  I found out I am an "Empath" this week, feeling others pain..I understand his pain. They all rushed over and it took a little time to adjust his machine and eventually he got better. But all this serious medical stuff I have seen is "traumatizing" to me in some way. I try not to move. I try to do everything right but sometimes it messes with your psyche, although I am cheerful in there, have made some friends and just try to get through it. But we are human too. We fear. We wonder our future. We see others that don't make it and we have to think about our own mortality. Every time they hook me up, I think about mine. But I remain positive despite my fears. 

[SunshineOfHope2]

I'm scared to ask--which statin caused that? My cholesterol dropped dramatically after my transplant and so I thought the cardiologist would decrease/stop it, but she's greedy and wants to keep my LDL below 70. I'm on Crestor.

Your name says you have a positive outlook and that will take you far. Best of luck. Im vacationing in Hilton Head right now-love it here!

It was Crestor! They said 10% of people with have that rare side effect of rabdomyalis. I unfortunately was one of them. 

I must be one of that 10% as of the three statins I can only take the weakest,  Prevastatin.   Either of the others and I get weak, cramped, achy, and sick within only a few days.

I was on the (statins) Prevastatin and the Simvastatin but both only a short time less than a few days but they caused me problems like hand swelling. So he gave me Crestor. I wish I never would have taken it. I said a 1,000 times I wish I could go back. But this is my "new normal" and I have to accept it. I remember being in a doctors office and most of the patients had been on statins but NONE of them would take them anymore. At that time I agreed with them and did not take mine either. And then doc gave me Crestor and I took it as instructed. 

Thanks again