I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: zona on January 07, 2010, 02:04:58 PM
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Hey everyone,it has been a while since my post,hope everyone is good.I hate to complain but I cant stand this anymore. My bones hurt so much,went to my neph. appointment and my usually high blood pressure was about 69 over 49. I felt so sick.My blood pressure has never been that low in my life.Anyway,I was there for 2 hours before they had an exam room for me,then another 2 hours before my neph. came into examine me. :Kit n Stik; She was so insensitive to my pain,I have told her over and over that when she checks my legs for fluid it hurts to squeeze but she does it anyway,now my legs are even more sore.My whole body hurts and I am itching all over,I cant sleep.I called the clinic today and asked if I could have something to relieve my pain and was told to see my pcp Dr. about that.I wish I could change docters cause she is so callus about everything. My pcp docter is booked untill the end of next week. And my labs show a decrease in my gfr,which is now 13%. I cant make her understand how bad I feel,I dont know what to do,I thought docters were supposed to help.I also have been very short of breath and she just ordered tests for my heart and chest,but not until the 19th of this month.I told her I feel the fluid going around my lungs at night and she just said maybe its asthma.I wanted to scream! I have never had asthma! I just know what to do.She knows I have never asked for pain med before and usually I can take a lot of pain but this pain is causing me to not want to get out of bed.I cant stand to even be touched.
Edited: Fixed smiley error - paris, Modertor
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You ppor thing - it sounds awful. I can't help much though I'm afraid - they do have to squeeze your legs to check for fluid retention. Is there no way you can change doctors?
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I have seen this doctor for 17 years and am going for transplant evaluation on the 26th so I am afraid to change right now. I am also having pain with my av fistula but she wasnt concerned about that either.
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I know what you mean. I don't really like my own Doctor that much, but I've ben going to her for so long I can't imagine changing. However, your symptoms sound scarily like you need to start dialysis already! Is there the likelyhood of a transplant soon?
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No I dont have a living doner. She has not said it was time for dialysis but my body tells me maybe it is. I guess 13% is enough function in her eyes.
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Yuck. I feel so bad for you. It's bloody awful feeling like that. Just remember if you do need to start dialysis - you will feel better!
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Thank you Hanify!
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Zona, I am sorry you are in so much pain. I am kind of at the same point you are and there are days when everything hurts: chest, bones, shortness of breath and low bp. At 12% and creatinine of 3.2, I am just hanging around until someone decides I am sick enough. I know the nephs see so many people that are much sicker than us, so they may not be very sensitive to our pains. But, you need to keep fighting for your health. Something is going on and someone needs to make you feel better! I am worried about you. Let us know if anything changes. :cuddle;
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If you have fluid accumulating in your lungs Zona I think you need perhaps to start pushing to start dialysis. Your bone pain could be related to high levels of phosphorus and that too can be dangerous.
I'm so sorry that your neph doesn't listen more closely to you and your symptoms and as soon as you can (I understand about the trx evaluation, but a good neph is crucial) try to start the hunt for a more "humane" doctor. Could your pcp help with this quest?
:grouphug;
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zona, I'm also really sorry to hear how hard things are for you right now. I do want to be a little bit pushy with you and urge you to please find the energy to switch doctors. This "doctor" (if we must call her that) sounds dangerous. I have hated doctors most of my life (I had a kidney transplant in 1976) but today there are a few that I actually look forward to seeing. It makes all the difference in the world. At a minimum all of us should be taken seriously and receive help when we ask for help.
Good luck. :flower;
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Thanks everyone,I have always been a non-complainer,to just go with along with it. So this is hard for me.Paris ,it does sound like we are both the same. My creatine was 4.8. and my bun was 45, I think. Everyone on this board seems to be so strong,I admire them,cause I am a big baby compared to some of the things ya'll have to deal with.
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I think she could be dangerous because she just doesnt seem to care. I will ask my pcp when I finally get to see him,I know he is not too keen on her either.
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I am sorry for your pain. It doesn't seem fair to have to deal with pain issues on top of everything else kidney disease brings. If you can't change doctors right now, is there any way you can clearly state that you feel you need a prescription for a prescription pain reliever? If they give you a hard time, tell them maybe they should try walking in your shoes for a while to see what it's like.
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would a trip to the emergency room help get another dr to look at you? My fil was misdiagnosed for three months until he was admitted to the hospital and saw a different dr. Good luck.
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Okay,I just looked at my labs and these are the results.BUN 56 and Creatinine 3.67. Phosphorus was 4.7. GFR was 13%. I am also anemic. All these levels have gotten worse since my last appointment 2 months ago. She sent me a message saying they were fine. I am wondering if she really read them!
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ikecthem,that is not a bad idea!
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Sounds like a poor doctor who doesn't seem to actually be LISTENING to her patient!! You've got bone pain, bad itchiness (both signs of high phos in some cases), anemia, shortness of breath, you feel fluid... and they're not doing anything? Christ I think I'd be off to the ER myself to get something proper done. I think it sounds like you need Dialysis and soon - if nothing but to relieve the symptoms for you.
I understand you have seen this same doc for a long time and are having a transplant eval, but this person doesn't seem to be taking your situation into account properly - that doesn't sit well with me and I'd want at the very least a second opinion.
Best wishes to you to get this resolved somehow soon.
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I really think the best thing to do would go to the ER. I worry about the fluid around your lungs, Otto had the same thing and at night when he slept I would hear him "gurgle", when I told his DR that he said it was time to start as that is bad. Otto was in the Hospital 3 days later and started D in the hospital the next day and they took 19kilos off in 2 days. Please get some help, I'm very worried for you..... :cuddle;
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If you have a reasonably competent ER in your area, I would encourage you to get there ASAP, when you describe your symptoms to them I'm sure they will give you priority treatment, from what you describe you are in grave need of it. Tell them your problems with your Neph and ask for another one to check you out if possible. best wishes
Tom
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Zona,
This is truly not something to play with. You have gotten good advice.
1. Get to the ER. Your life is at stake. I repeat, it is your life and you must take control of it.
2. Insist. Don't ask. Insist that you be seen by another neph.
3. Get better then kick ass.
Please, please don't wait on this.
Hugs and concern.
Aleta
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Doesnt sound too good Zona. Most of the people here know of which they speak, and if I were you Iwould take their advice. Now, not later. I do know how you feel, about the Drs. but, if you go to ER, they would probably just work around them.
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I am so sorry to here !
Get another doc SOON.
I am thinking of you. :grouphug;
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Sounds to me like you need dialysis Zona. Don't think i've been in the pain you talk of.
Have you chosen a treatment option?
As it takes time to get a usable access, whether it be a tenckoff for PD or fistula for HD.
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I had an AV fistula surgery 2 months ago and my surgeon says it's ready.It is still very painful though but I think I may be sleeping on it. I toss and turn.
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Two months is quite soon - I thought they usually waited 3 before they used it? Don't have one myself so I'm not too sure.
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You are having all the signs of poor kidney function:
anemic
bone pain
edema
shortness of breathe
itching
GFR 13%
You are in a danger zone right now, go to the ER as soon as possible. Please don't wait!!
Find a different Dr. that cares about your wellbeing. Your life is too important to leave it in this Dr's care....she is dangerous.
Your blood pressure was 69/49???? I would think right there your Dr. would have been concerned.
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I had an AV fistula surgery 2 months ago and my surgeon says it's ready.It is still very painful though but I think I may be sleeping on it. I toss and turn.
Mine is getting sore now when i'm overloaded..... there is too much fluid going through at once that the fistula isn't used too... well that's what i'm assuming since it stops hurting as soon as i take the fluid off.
Push for D.... if your at 13% and feeling that horrid you should start. It is your choice, not the DR's
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hI zona, Please listen to these people, you need to get some help soon. Do not feel any infinity with a doctor that does not listen to you. You have to question these people, you have to trust that they have your best interests at heart if not change them, it is your life.
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Zona I went thru the same..... I started when I was around 14...... about three months ago...feeling bad like you .... some days the pain in the body , bones, skin just everything was so bad.... just taking a BP hurt so bad.... funny how the nerves are affected by the toxins..... I believe you are ready.... If your fistula is ready go for it.... After just a couple of D treatments I felt really good..... had some problems with my fistula at first but it was a baby fistula and its gets better the more you use it..... Now I look forward to my treatments at D..... I dont like D and the needles but I feel so good now.... I cant beleive how badly I felt before D..... I feel 10 years younger..... I just cant tell you how good You will probably feel after a few treatements ......I am very glad I have started D...... So go ahead why continue to feel bad get started with D and that way you will start feeling good sooner.......
kathy
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I am sorry you are in so much pain
and I do hope you receive medical help soon.
Good luck and kind regards from Kristina. :grouphug;
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Hello Zena,
Sorry to hear about your pain. Although it’s hard to change doctors, your health comes first. If this doctor is not sensitive to your needs, than it’s a waste of time dealing with her. You can still stay on the transplant list with a new doctor. Just give the transplant people the new information. If she does not respond to your pain and concerns, what makes you think you will be successful with a transplant involving her? As I heard, doctors have to keep giving you meds to see what type of meds works best with your transplant. If this doctor does not respond to what’s happening to you now, what makes you think she will respond with the transplant. It may fail because of her lack of interest to see it work. She is showing you her personality which probably will not change after receiving your transplant. I would recommend you seek another doctor before getting that transplant if you want it to last. She apparently doesn’t care what happens to you. GET ANOTHER DOCTOR!!! Sorry, but doctors like her pisses me off, :Kit n Stik; [color=]“idiot”[/color] (referring to the doctor)!!! You will not be happy until you do.
Also, you should start dialysis while you are healthy because you will do better with the transplant. It takes a while for you to receive a transplant unless you have a donor. So you want to be as healthy as possible. Not sure why the doctor did not recommend dialysis before sending you for a transplant evaluation. :urcrazy; Most doctors would have put you on dialysis first before evaluation.
Also, another thing, sometimes your meds can cause your body to retain water. Since you are not on dialysis maybe you can get some water pills. The pain in your legs can also come from certain types of meds especially blood pressure bills. I’ve heard many people complain about the bp bills causing pain in their legs and when they stopped taking it, the pain stopped a week later.
The itching is the toxin that your kidneys are not cleaning out, which can cause organs problems whereas it will be hard for a transplant to last. So again, see if you can start dialysis as soon as possible since you are going for a kidney evaluation.
Sorry don’t mean to come across strong but sometimes things can be avoided if some doctors do their research and stop trying to play God.
cdw
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Thanks everyone for your concern and advice,here is my update....I saw my surgeon and my ac fistula looked okay,they did an ultrasound to look blood clots,and am waiting for those results,I do have mild steal syndrome and may have to have surgery if it gets worse.My veins are small. I am going to approach my neph. about starting dialysis and if she says no then I guess I will be looking for another doctor. She has told me in the past her goal is to keep of dialysis as long as possible but enough is enough. I also had my intact pth levels checked and the results are 637. I will let you know when I start dialysis zona
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Good for you Zona. None of us wanted to start but all of felt better after we did.....Its your decison and you are the one feeling sick. We are here for and keep in touch...
Kathy