I give up....please help :(

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I give up....please help :(

Postby Zoeanne29 » Wed Jun 22, 2016 1:58 pm

Hi, I'm Zoë. Im 29 and was only born with one kidney. Anyway since 2012 I have had multiple problems with it. Re-current kidney stones and kidney infections. I've had a stent put in which didn't really do much. I have doctors saying different things such as hydronephrosis, a narrowed ureter, urine reflux etc. My new constultant is an idiot, first of all he showed no emotion or empathy then did a CT scan and said I had 2 kidneys not 1 :/ obviously a mistake or mix up in results as I definitely only have 1.
All in all I keep getting the same conclusion *deal with it*.
I'm a single Mum to 3 children, my youngest is 2. Im taking tramadol, paracetemol & codeine every day if the pain gets alot worse then they give me oramorph. I don't go a day without having blood in my urine, constant pain, feeling winded and out of breath, no energy, pain when I pee, when I do pee not very much comes out I really have to push it out. Everytime they do urine tests it shows up having an infection and high levels of protein. They give me anti- biotics 5 or 7 day course then it goes for a bit then comes back a couple of weeks later. I'm not asking for a diagnosis just wonderimg if anyone has had the same issues cos I can't carry on like this. Ive been diagnosed with clinical depression and anxiety.
Zoeanne29
 
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Re: I give up....please help :(

Postby mildredthecat » Wed Jun 22, 2016 3:09 pm

I wouldnt bother asking here no one will answer, they are all too wrapped up in their own problems.
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Re: I give up....please help :(

Postby Zoeanne29 » Wed Jun 22, 2016 3:18 pm

Really? Its the only forum I could really find that seems to discuss a range of Kidney issues as all the other are about Kidney failure x
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Re: I give up....please help :(

Postby wagolynn » Wed Jun 22, 2016 3:24 pm

Hello Zeoanne29,

I would suggest, asking your consultant to show the pictures (CT Scan), and to compare them any previous images. This needs to be done carefully, try to avoid 'demanding' to see the images, I know it should not make any difference but even medical staff are human.

As to the consultant not showing emotion, imagine having to deal with very sick patients day after day, what would we do to try and protect ourselves? Perhaps we would get emotionally involved (which my wife did as a very young nurse) but this does not help the patients, and would quickly make us ineffective.

So you may ask, "what can be done smarty pants"?
I think, the best think is to try and understand why the various diagnoses have been arrived at, don't let things go, if you do not understand, say, "I don't understand what you are telling me, please can you explain again".
I find most medical staff are pleased to explain and help us to understand, because it easier to treat a cooperative and interested patient.

Best wishes.
wagolynn
 
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Re: I give up....please help :(

Postby Chris Wright » Wed Jun 22, 2016 9:41 pm

Zeoanne,

Your situation sounds grim, i really feel for you.

I can't offer many words of comfort since i've never been in your situation.

One thing i would suggest, if you are UK based,is to ask your GP to refer you to a different Consultant. You have every right to do so and the GP should comply.

Then maybe you will get a more sympathetic hearing.

In the meantime, best of luck.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
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Re: I give up....please help :(

Postby rheaybou » Thu Jun 23, 2016 12:18 pm

mildredthecat wrote:I wouldnt bother asking here no one will answer, they are all too wrapped up in their own problems.


That attitude wont get people wanting to help/advise if they have been through similar situations to yours or others!
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
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Re: I give up....please help :(

Postby cspringer479 » Mon Jul 04, 2016 1:49 pm

Hi Zoee,

I felt how much pain you are in now. If only you have the best doctor in your way, you can alleviate the pain or might have been remove your problem. Try to see and consult with other doctors with the right specialty. Give time to exercise your body as much as you can. Do not ever lose hope because you still have wonderful kids to take a look everyday.

I will include you in my prayers. Hope you can be better the other day or soon.
cspringer479
 
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Re: I give up....please help :(

Postby Johnylefox » Mon Jul 04, 2016 6:28 pm

Is your consultant and nephrologist or urologist?
You might be surprised that they do not always have a grasp of each others field despite the link between kidneys and waterworks.
Make sure you see a nephrologist and urologist.
My condition (IGA) was not picked up by a urologist who discharged me and my symptoms (blood and protein in water) despite me having IGA and my kidneys failing within 3 years of discharge.
I only stumbled across a urologist after a routine BUPA medical picked up my failing kidneys.
All tests before hand (CT scan, cystoscopy etc..) led to me being discharged by a urologist.
Sometimes they check you out and if you fit their criteria for healthy and not dying, they give you a clean bill of health.
Good luck.
Johnylefox
 
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Re: I give up....please help :(

Postby Celreilly92 » Sat Jul 30, 2016 1:37 pm

I don't have any advise that could really help you other than GET A NEW CONSULTANT! you should never be treated like that or be told to just deal with it. You have to have a Dr that you feel comfortable with. I recently changed specialists as I moved to another state. Thankfully my new specialist is pretty good but I was scared about getting a new specialist as I had been with mine for 24 years and he knew EVERYTHING about me and if I knew something was wrong with my body he would never take it with a grain of salt. You need that relationship with your specialist and GPs. I am yet to find a GP here that I am comfortable with or like but I have no trouble dropping the dodge ones.

You need some sort of support system. Anxiety and depression when you're sick is a terrible mix. I stupidly moved across AUS away from my support system and have been struggling with that myself. It's important to surround yourself with people who are going to stick by you and understand/empathize with what you're going through. I just recently joined this site as I am struggling without a support system and people who can understand other than my boyfriend. Have you thought about asking at the hospital or Drs office about support groups. I know it wont help much with your physical pain but everyone needs someone to talk things out with.

I wish you all the best, I've had kidneys stones before and they were awful! I hope you have some relief soon.

xx
Celreilly92
 
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Re: I give up....please help :(

Postby chrisb » Sun Aug 07, 2016 2:55 pm

I do not u derstanding mildredthecat's opinion of this site. I have been visiting it and taking part for several years now and I have always found it informative and friendly.

You must try and fi d a consultant you are happy with be a use its going to be a very long relationship. Good luck
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