Problems Problems.

[Natalie]

Last year I found out that one of my kidneys had "shrunk" due to CKD, but we can't figure out why. Additionally, I found out that I had Hyerparathyroidism. My kidney Doctor guessed something was up with my parathyroids due to my high PTH. Turns out I had a tumor on one parathyroid and I had it removed. I was in a RN program about 8 years before finding out about my medical problems. I had 10 weeks to graduate. I couldn't do it. I was normally a very good and competitive student but I sarted having a hard time concentrating and finally just felt ambivalent about class. I quit. Things are just getting worse - I had a sestamibi scan that showed a "suspicious area" near my heart. I cannot have CT or MRI because they would wipe out the remaining function of my kidney. I have one kidney that functions at 30% and one that's given up entirely. My husband's insurance covers a lot but still the bills are piling up. I know there are others like me, with similar stories. I am often tired and often sitting in some Doctor's waiting room. But I have this computer and could do some kind of work with it. Most things I've checked out are scams. Does anyone know of a legitimate business for people who are sick but could do SOMETHING? Anything needing medical
jargon, I can probably do. I am interested in how others cope financially when they are sick.
Take care,
Natalie

[Beth Witten MSW ACSW]

First, CT scans and MRI scans are used to find tumors or blockages related to kidneys.
http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/

If contrast dye is used, people with kidney damage need to make sure the doctor knows this so they can use enough IV fluids to flush the dye out of the kidneys.

If your doctor told you that you have 30% kidney function, this is the total function you have in both kidneys. So if one is shrunken a lot, the other kidney is doing all the work. If you are tired a lot, you may be anemic. If so, there is a medicine called EPO that can help.

You might try contacting the American Association for Medical Transcription or look online at http://www.aamt.org. This site has all kinds of information about how to become a certified medical transcriptionist. I've heard there are jobs at home for them, but would suggest calling the organization to ask before signing up for an education program if working at home is important to you. They do have distance learning (internet courses) to get the education to get the certification.

Another option would be to work through a temp service and ask for placement in MD offices or ask your doctors they could give you work to do. I think it would be terrific having someone with as much nursing training as you have and some dialysis and transplant patients do work in healthcare or non-profit health organizations.

It's a shame that you had to drop out of your program so close to completing it. If you could get your PTH under control and if you have anemia get that treated, perhaps you could finish it and have even more opportunities.

[joelpietersen]

Yes, there are quite a lot of resources online about this which are quite comprehensive.

[Unregistered]

I've been cruising the internet for information because Lord knows I am not getting any from my Urologist. I've made an appt. with my family Dr. next week - maybe she will clear some of this up for me. It has not been a good year for me. I started with daily headaches - a new thing for me - saw a neurologist who said it was a change in my migrains and put me on a migrain preventative - this helped. I seem to have arthritis in every joint as well. (Did I get old all at once?) My family Dr. did a physical and my blood pressure which had always been low was now high and my cholesteral (sp.?) was way up and - lo - I had blood in my urine. So she gives me blood pressure meds (first BP med didn't work but the second did) and cholesteral meds and sends me to a urologist.

This urologist was completely focused on cancer - I'm not stupid - I know it's prudent to rule out cancer if you have blood in your urine - but surely there are many other causes? He didn't mention one. Anyway, looked in my bladder - clean; sonogram of my kidneys - normal. Creatinine and urine cytology. My creatine was .95 - okay. I was to see him in 6 months. I had two episodes of visible blood in my urine - tea colored - so I called the urologist's office. They said all my tests were normal and I should just wait for my follow up appt. So I go in for my follow up and when I tell the Dr. about the tea colored urine he starts up about kidney cancer that wouldn't show on the sonogram - again with the cancer - anyway he wants an IVP. And I still have micro blood in my urine.

So I show up for the IVP after another creatinine and a BUN only to be told after they do the "scout" xrays that they can't do the IVP because my GFR is too low! I don't even know what a GFR is! The XRay tech explained it to me and they ended up doing a CT scan. The CT only showed some tiny kidney stones - cause of blood? Don't know because I don;t see the urologist again for 3 more months!

My creatinine is now 1.1 and my GFR is 52 - I am 55 and white. He wants to test it again in 3 months - is this how this is normally done?

In spite of the urologist I am not concerned that I have cancer, but I am concerned that something may be causing damage to my kidneys. All of the new meds that I am on? Something else?

He might be a fine Dr. in terms of what he's doing - but he doesn't tell me anything - I think I will find someone who will actually talk to me and explain some of this stuff.

What I'm wondering is if it's possible that the GFR is just a fluke - or is my kidney function really compromised? Should I be trying to get an answer for what's happening here or am I over reacting?

[DoriSchatell]

Hi Unregistered,

We're not doctors, so we can't give you answers--just point you to more questions. Here is a GFR calculator, which does come up with the GFR of 52 that your doctor said you have: http://s47121.gridserver.com/learn/calculate/. Yes, it would be normal to repeat the test and see if it is the same. If I were you, I don't know that I'd want to wait 3 months to do it. Yes, you should be trying to get an answer.

Here are some things that occur to me:
1). A urologist is not the right specialist if the problem starts in your kidneys and not your ureters or bladder. Since the latter have been ruled out, at least for now, ask your primary doctor to refer you to a nephrologist (kidney specialist). It's odd how doctors split up the body into little bits, but you want the kidney bits checked, and that hasn't been happening.

2). I didn't read that a urinalysis was done. Cells that are found in a urinalysis can help pinpoint which part of the kidneys-ureter-bladder are the problem.

3). A kidney biopsy might also provide information about what is going on.

Here is a website from the National Institutes of Health with information about hematuria (blood in the urine): http://kidney.niddk.nih.gov/kudiseases/pubs/hematuria/.

[Unregistered]

Deborah,

Thanks for your response. I know you folks aren't doctors - just looking to see if someone with more experience than I have in this felt the same - that this uroligist is barking up the wrong tree and making me crazy in the process. That's why I'm headed to my PCP - she at least will talk to me and try to make heads or tails out of what's going on.

What I read at WebMD is that 1.1 is still in the normal range for creatinine but the GFR is worriesome. I don't have any information on my BUN results. But at this point, I am concerned that something may be causing a decline in kidney function - and it's not likely to be those little kidney stones.

I'll talk to my PCP and see if she would do a retest of the GFR and recommend a nephrologist to see if I do have anything to be concerned about. I'd really like to outlive my kidney function if at all possible.

I have a first cousin who had kidney failure at a relatively young age - she received a transplant and is doing well, but it was very hard on her while she waited for the transplant and they never did come up with an explanation for the kidney failure.

[Unregistered]

Dori - sorry not Debrorah!

[DoriSchatell]

No problem. :-) Let us know what you find out, and if we can help you find any other information after you see your PCP.

[Beth Witten MSW ACSW]

One thing that many people, including some doctors, don't know is that creatinine doesn't rises to above the normal range until you've lost 50% of your kidney function. A GFR of 52 means that you have an estimated 52% of normal kidney function left. It's good that you're researching and doing your best to get the care you need to protect your kidneys. You might want to look at the information on CKD on this website under "More Reading." You might also want to review the information on Kidney School (see info in the left panel), including the link.

If your blood pressure is high and it wasn't before, especially if it's hard to control with medicine, it's always possible that you have a condition called renal artery stenosis. This is a narrowing or blockage of the renal artery that feeds the kidneys with necessary blood. When the blood flow is reduced, the kidney tissue dies and the kidney shrinks in size. There is treatment for this condition so if you have it, the sooner it can be diagnosed and treated, the better your long-term kidney function will be. You might ask your doctor if you may have this condition.
http://www.nlm.nih.gov/medlineplus/ency/article/001273.htm

As Dori said, a nephrologist would be the best specialist for you to see to advise you of ways to protect your kidneys. Good luck!

[Unregistered]

Hi, yes its all in the title. i have been diagnosed with renal failure for a year now. i have been on haemodialysis for a year also. Its been the worst part of my life, and whats worse (if there is anything worse) its not just a part. Its for life. I met my boyfriend 6 months beofre my diagnosis and we were close although not an item. Myillness brought us closer and now are scheduled to marry this year. However, inside i feel like giving up, especially when i go to hospital and the dialysis doesnt work (i.e. needles dont go in) or it hurts too much. plus the doctors and nurses just make you feel like your doing it on purpose. ive really had enough of it. when i feel so low, i often look for stories of others to regain some strength. I want to live and i often think of my life beofre and wat it should have been without this renal failure. I could have been so much, i graduated and had a excellent job. But now i cant even work, having kids might not be an option either. What could i posibly offer my husband to be? instead hell be going around hospitals with me forever, i wish i could turn back time to the day of my diagnosis when we werent as close and i wish i didnt tell him/confide in him. I wish i never let him get close to me, if id known my life would be so fucked up i wouldnt have screwed his up either.

[DoriSchatell]

Unregistered, I suspect that you may be depressed--which is not unusual, given all that you've lost. The key is to have hope that you can regain some of that.

For example, it IS possible for people on dialysis to successfully bear children--with either a transplant or a LOT of dialysis. (Generally dialyzing 7 nights a week is recommended).

Funny thing about dialyzing at night: it leaves you feeling MUCH better, gets rid of most or all of your limits on diet and fluids, cuts your chances of being in the hospital in half, and offers a chance of survival that is equivalent to transplant. Plus, when you do dialysis at night, it's a whole lot easier to use that degree you worked so hard for and work during the day.

You have other treatment options that can let you take back control of your life and feel as if you have more to offer to the loved ones around you. Please think about one small step you could take toward making your life different. Perhaps visiting our Kidney School module on Coping (http://www.kidneyschool.org/mod_05/mod5_01.shtml) would be a way to start.

Check back with us--we want to hear how you're doing. You have OPTIONS, and your life can be better than it is now.

Oops; since stories help you, I wanted to add that on one of our other sites, which is about home dialysis, there are lots of stories of folks who switched from in-center and changed their lives. You can read them here: http://www.homedialysis.org/resources/stories/

[Unregistered]

This is the very first thing I've read on kidney problem and it's encouraging to me...thank you

[Unregistered]

Beth - my husband started dialysis recently and has also just had major surgery to remove both of his ploycistic kidneys. All this in about the 6-7 weeks. He is having trouble sleeping and part of that is because he has these jerking, twitching episdodes all night long - like every 30 seconds - and he just tosses and turns adn can not get comfortable. His nurse practioner at his dialysis center prescribed 10mg Ambien for sleep, which works for about 3 hours. And then we start all over again with the out of control twitching. I can't seem to get an answer on why he has this system. Can you help me please? I understand treating the insomnia - but is this twitching something more serious?
Anette



One thing that many people, including some doctors, don't know is that creatinine doesn't rises to above the normal range until you've lost 50% of your kidney function. A GFR of 52 means that you have an estimated 52% of normal kidney function left. It's good that you're researching and doing your best to get the care you need to protect your kidneys. You might want to look at the information on CKD on this website under "More Reading." You might also want to review the information on Kidney School (see info in the left panel), including the link.

If your blood pressure is high and it wasn't before, especially if it's hard to control with medicine, it's always possible that you have a condition called renal artery stenosis. This is a narrowing or blockage of the renal artery that feeds the kidneys with necessary blood. When the blood flow is reduced, the kidney tissue dies and the kidney shrinks in size. There is treatment for this condition so if you have it, the sooner it can be diagnosed and treated, the better your long-term kidney function will be. You might ask your doctor if you may have this condition.
http://www.nlm.nih.gov/medlineplus/ency/article/001273.htm

As Dori said, a nephrologist would be the best specialist for you to see to advise you of ways to protect your kidneys. Good luck!

[Beth Witten MSW ACSW]

How are your husband's labs? Are any of his blood tests out of the normal range? If so, some chemicals in the blood can cause involuntary muscle twitching when they're too high or too low. Also, there's a condition called restless leg syndrome that is common in patients with kidney failure on dialysis. Your husband may have this or one of the other conditions listed in this article:
http://emedicine.medscape.com/article/1188327-overview

He may want to talk with a neurologist, the specialist who diagnoses and treats conditions of the nervous system.