I hurt so bad

[zona]

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.       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

[Hanify]

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?

[zona]

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.

[Hanify]

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?

[zona]

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.

[Hanify]

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!

[zona]

Thank you Hanify!

[paris]

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.   

[monrein]

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?
 
 

[cariad]

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. 

[zona]

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.

[zona]

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.

[Sunny]

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.

[iketchum]

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.

[zona]

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!

[zona]

ikecthem,that is not a bad idea!

[RichardMEL]

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.

[lola]

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.....

[silverhead]

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

[willowtreewren]

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

[Jean]

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.

[Des]

I am so sorry to here !

Get another doc SOON.

I am thinking of you. 

[sico]

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. 

[zona]

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.

[Hanify]

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.