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tanyaw
11-11-2006, 03:02 AM
Just here to get a little advice. I was informed this morning that my 24 urine test says that I have borderline protein and am in need of a biopsy. I am totally freaked! Should I be? Is this normal for "US"? What does this mean? Will it keep getting worse? can it cure itself? Are there things that I can do for myself for it not to get worse? Like eating certain things or what not to eat or drink and so forth??? I have started to take supplements like a fish oil mixture, vit.E, vitC, folic acid, zinc, a multi...am I overloading? Does anyone go to a nutrional therapist or doctor and know about this? I am just reading books about it. I cannot find answers here due to the fact that every doc just believes in the meds and no alternative therapies....maybe i am killing my kidney. I am so confused and so upset that I have have organ involvement I was just hoping to go in to an extended remission one day and never hear about lupus again.....I guess I am dreaming.......................

tanyaw
11-11-2006, 03:04 AM
By the way, why does it say Sea Monkey under my name????

MARYCAIN
11-11-2006, 08:53 AM
First thing, take a few deep breaths! I know this is scary and overwhelming, but stressing yourself out this much is only going to make things worse.

Kidney involvement is very common in lupus - there are some estimates that about 70% of lupus patients have at least some minimal kidney involvement. For many patients, it never goes beyond some protein spilling into the urine, which can be treated with medication. There are other medical conditions that can cause proteinuria (protein in the urine), so your doctor may want a kidney biopsy just to confirm that it is being caused by the lupus, and not some other problem. A biopsy will also help him determine whether you need additional treatment, or if simple measures like a low-protein diet would be effective. Some people develop proteinuria simply because they are eating more protein than their bodies can effectively digest. Borderline proteinuria may not need to be treated at all, just monitored.

A kidney biopsy is certainly uncomfortable, and just the idea is scary, but is is generally safe and gives your doctor a lot of information. Since you are in Saudi Arabia, you would certainly want to have the procedure done at a major hospital where you know the sterile precautions will be up to standards. You may need to discontinue some of your medications beforehand, so discuss this with your doctor.

Definitely stop the fish oil supplements because they can increase the risk of bleeding during the biopsy. Some fish-oil supplements may contain high-levels of mercury, so this is a concern regardless of the biopsy.

It's good that you are interested in other therapies, but you have to remember that "natural" doesn't always mean safe. Poison mushrooms grown naturally but I doubt anyone would think they are a health cure. Vitamins, herbs, supplements - any substance you put into your body to affect the way your body functions - is by definition a"drug", regardlesss of whether it is dispensed by a pharmacy or a health food store. The difference is that most of the products in the health food stores are not regulated for quality, safety, or effectiveness - you are relying solely on the manufacturer's word. Like any drug, these products can have side effects, and interactions with other medications, and some vitamins can be toxic in large doses. So you have to be safe and smart when choosing alternative therapies. There are some medical doctors who also use alternative therapies -Dr. Andrew Weil has several books available about combining conventional and alternative treatments. There are also some good, well-researched books like the Herbal PDR, The Green Pharmacy, and Prescription for Nutritional Healing, which discuss side effects and interactions. Just remember a healthy dose of skepticism can be a good thing - any product that sounds too good to be true generally is.

Hope this info helps!

tanyaw
11-11-2006, 09:13 AM
Thanks for that info. I just returned from the nephrologist and he is going to wait for more labs in a months time to see if I need meds or a biopsy. He thinks that maybe my meds now are keeping my kidney at bay and wants to see what will happen as I am reducing my prednizone down to 5mg by the end of Nov (gradually). So we shall see. I go to a beautiful super high tech hospital here that looks like a luxurious palace and all doctors are highly trained so there is no fear of not getting top class care.

About the supplements....I read a Dr. Atkins Vita-Nutrients book as well as Prescription for Good Health (like you mentioned) but paranoid that I am toxifying myself...I so badly want to get well that I am willing to do anything!

I am just freaked! I wanted to sail through this...maybe be a miracle patient that cures herself???I have two small kids and I hafta see them grow up!! Every ache and pain makes me so nervous that not only do I have Lupus but every other disease known to mankind...

Every doc tells me that I can eat what I want and that supplements won't help and every vitamin book says that doctors support the drug industry. Where do I go from there???

MARYCAIN
11-11-2006, 10:10 AM
I have four children under the age of 11 - definitely relate to your fears there. But I've been diagnosed for just six years now and I have every intention of living to see my grandchildren grow up! That is, if I can survive the stress when they get their drivers' licenses! A strong, positive outlook is your best weapon against this disease.

As far as the diet, some people find that the Lupus Recovery diet helps them, others don't seem to be helped. I eat a vegan diet for personal reasons - it doesn't seem to affect my lupus, but some people find that giving up meat and animal products helps them. No one plan or diet will be right for everyone - your individual metabolism determines what works for you. So it doesn't hurt to try a dietary approach - you can always change it if it doesn't seem to help. There are a couple of books about alternative therapies strictly for lupus -
you might find them helpful.

If you use supplements, including fish, make sure you are purchasing a high quality product from a reputable manufacturer. Fish oil supplements from deep-sea fish, or fish from areas like Alaska, Norway, Iceland and other cold-water areas where the water is still fairly pure, are a safer option than supplements from farm raised fish. You can also get plant-based supplements like lignan or flaxseed oil, black currant oil, and evening primrose oil. Walnuts and walnut oil are also a good source of essential fatty acids, so the nuts are a healthy snack. Just steer clear of the heavily roasted/salted variety!

Some foods that have anti-inflammatory effects are fresh pineapple and papaya, and tart cherries. Spices like tumeric, ginger, cumin and curry also have some beneficial effect, especially ginger. And dark chocolate is actually good for you! So if you just have to have chocolate, the darker the better!

littlered
11-11-2006, 05:14 PM
You know, because I had protein in my urie this weel. ,, Internal medici n doc wants an MRI and oossibly a kidneybiopsey next weel. could one our wonderful experts ee "walk me through it'? what will teydo, step by step, whatarethey lookng for i thtsamlw, rx Also, I was told it happens under a "locl".....sometihing I am very nrvous abput---I'drather be ut of it, or at least in what they cal; "twilight sleep" like my endosocpoy.....i literally did fall aslee1 Any chance of pressing my preference? is tihis strictly outpatiet or do they keep you for obsevatio? What can I expect, dring, and post-op? I know, lots of /, but yall" never let me down---thamks adance=kthy
(sory about all typos....new mecx won't even le me type or ead mch today,,,,worst braiin fog ever! Love always--Kathy

MARYCAIN
11-11-2006, 06:34 PM
Kathy, hon, please be careful - I know you aren't driving, but be careful about stuff in kitchen too -I burned my hand really badly during one of my doped up periods - trying to drain pasta and instead poured boiling hot water and pasta over my hand instead of into the colander. So please be cautious and let hubby handle the hot stuff!

Were you by any chance already taking neurontin when your urine was tested? Because it's notorious for causing false-positive protein readings on a urine dipstick test - the biochemistry is beyond me, I just know the lab has to utilize a different testing technique because of the neurontin.

I've had two kidney biopsies done - neither was exactly pleasant, but I've had many medical procedures that were worse.

There are three methods of doing a kidney biopsy, but the percutaneous (through the skin) is probably the most common. It is usually done as an outpatient procedure, but if it is done late in the day, you may be kept overnight. Most biopsies are performed by a nephrologist or a radiologist - rarely a urologic surgeon or general surgeon may do them. This is not preferable as they may not have the same level of experience.

You will have blood tests done beforehand to check for any bleeding problems or other things that would make a biopsy inadvisable. You may have to stop certain meds 2-3 days beforehand to minimize risk of bleeding. Most doctors tell you not to eat or drink for at least 8 hours beforehand, just as with surgery.

The biopsy is sometimes performed in an OR and sometimes in the radiology suite under CT or MRI guidance - I think this is mostly your doctor's choice. You need to let the doctor know if you have ever had a problem with local anesthesia or any drugs in the "caine" family such as dental anesthesia. I've had one biopsy done just with local anesthesia - the second with a combination of local anesthesia and conscious sedation. If given the choice, I would definitely take the latter. This will depend a lot on your hospital's policy - many hospitals have a conscious sedation protocol that requires cardiac and O2 monitoring and the presence of an anesthesiologist or registered nurse anesthetist. So definitely ask about this.

Generally, you have to lie on your stomach with something hard under you to support your abdomen. Try to get as comfortable as possible because you have to lie very still. The doctor uses ultrasound or CT to locate your kidneys, then marks the biopsy site with a pencil or marker. The biopsy site is cleaned with betadine or another antiseptic and draped off.

A local anesthetic is injected, which can burn and be very uncomfortable. (doctor speak for stings like fire!) Once the area is numbed, the doctor inserts the biopsy needle through the skin into the kidney, while monitoring what he is doing by ultrasound or CT scan. You will feel a lot of pressure and possibly a popping feeling when the needle goes into the kidney. Sometimes they need tissue from more than one area, so the same thing may be repeated 2-3 times. You have to hold your breath and stay very still during the needle insertion, but it only takes a few seconds. After the needle is withdrawn, someone will put pressure on the biopsy site for several minutes to sto any bleeding. During my first biopsy this was actually the most painful thing because whoever was pressing did it so hard my whole back hurt. After a few minutes, they apply a tight bandage, and take you back to a recovery room or post-procedure room. You need to lie on your back for 6-24 hours. If you live some distance from the hospital you may be asked to stay overnight.

If you don't have any complications, you can go home, but you will still need to lie on your back for a couple of days. Your doctor will give you specific aftercare instructions. Your back will probably be sore for several days - this is normal. Your doctor may prescribe pain meds to take. You may have bright red blood in your urine for 24 hours or so - again, this is normal. Call your doctor right away if you develop a fever or signs of infection, pain in your shoulder or arm, or continue to have blood in your urine longer than 24 hours after the test. If you develop difficulty breathing, pain in your chest or abdomen, dizziness when getting up, or low blood pressure, or feel weak and cold, get to an ER right away because these may be signs of internal bleeding, which is an emergency.

Your tissue samples will generally be examined by a pathologist. It can take 2-4 days to get results. Be prepared for the fact that 25-30% of kidney biopsies are inconclusive, so a second biopsy may be necessary. Don't be too concerned if the doctor tells you you need a second biopsy - it doesn't mean they found anything dire.

Hope this helps!

littlered
11-12-2006, 07:15 AM
thank you!! wow, my last post really WAS a mess, wasn't it? It's the tylenol 3, which I must take before I eat. It REALLY messes me up. I am glad I will not need it in a few days. No, I wouldn't DREAM of driving or cooking on it. Its like I am drunk! My husband doesn't even like me walking round the house, he says I "teeter". and I fall aleep, so good thing I dont smoke anymore.
No, I wasn't yet taking the Neurontin when they took the urine. There was also a small amount of sugar present, which shouldn't be there. (Dad has diabetes, but didn't get it til he turned 80, so it's not a family history problem.)
I am definetely asking for general anesthetic if I can get it, but if not, at least you let me know what to expect. I think the doc expects to get alot of info from the MRI too. I hope too much damage hasn't occurred. I haven't noticed any pain or anything unusual....just pain in the hip that has some bone damage...but it does sometimes hurt in the BACK upper part of that hip...could that be something?
Arrrrrgh :mad: Wouldn't it be lovely to have a body that you DIDN'T worry about every little thing? Sigh...
anyhow, you really did a great job of walking me through it---once again, MC, you are the BOMB!

MARYCAIN
11-12-2006, 09:31 AM
I have really bad reactions to general anesthesia so I try to avoid it if at all possible. But with the conscious sedation, you are generally so out of it, you don't care what they are doing. I had the second Kidney biopsy done that way, and it was much easier than the awake procedure, at least for me. The only problem with the second one was I forget to tell the staff about the Reynauds, and the radiology room was super cold - my hands, feet and lips all turned blue, which freaked the radiologist out - he thought something had happened and I was too out of it to fully explain. Luckily one of the nurses was familiar with lupus and figured out what was going on, so they turned down the air and covered me with heated blankets. It would probably have been funny had I been awake enough to appreciate it - now I make sure to warn people about the Reynauds.

It would also have been nice if they had told me upfront that a kidney biopsy isn't always conclusive, so I wouldn't have been so concerned when I had to have the second one - because I assumed they had found something really bad during the first biopsy. So I wanted to be sure you knew - I guess doctors assume we know these things and don't bother to tell us. It would have saved me a lot of worrying if I had known that about a fourth of kidney biopsies have to be repeated.

One of the real problems with kidney disease is that it is "silent" - it often doesn't cause pain or any noticeable symptoms. A kidney stone or kidney infection usually cause a lot of pain so they get noticed, but lupus kidney disease may only cause changes in your lab tests, or things like fatigue or nausea which most lupies have anyway. So it's good that your doctor was monitoring you and caught any potential problems early. And Cellcept is very effective for lupus kidney involvement and rituxan also looks promising. We are really lucky because a few years ago the only treatments for lupus kidney disease were almost as toxic as the disease itself. So we've come a long way!

Keep us posted on how things go - maybe the MRI will give enough info that you won't need the biopsy. And be careful on the meds - use a cane or walker if you need to. The last thing you need is a fall or another fracture.

Missy
11-13-2006, 09:50 PM
I've had a kidney biopsy - June 2004. It was my first hospital experience, and I was really nervous. It does involve an overnight hospital stay to be sure the kidney's not bleeding. I happened to have acupuncture scheduled that morning, and she did some points for anxiety, which I think really helped relax me, because I didn't need any general sedation, only local anesthetic for the kidney puncture. The breath holding was fine and I focused on calming myself with yoga breathing between punctures. I only had to lay on my back for 3 hours after - the worst was not eating until the three hours had passed. I was so happy to be able to pee on the toilet again!. Of course, between peeing, I did lay down, and he told me to tke it easy for 7-10 days, but I could walk around and everything.

All in all, it was sooooo much easier than I thought it would be. And it was really nice to know what kind of Lupus Nephritis I have and the extent of damage to my kidneys.

Good luck with whatever decision you make!

littlered
12-07-2006, 06:02 PM
By the way, I talked to my sis before the biopsy....she said to ask for "Versed" (sp?) before the biopsy. It apparently makes you very groggy and you FORGET about what happens during the procedure. It doesn't require an anesthesiologist, either. I asked for it, got it, and I don't remember a thing.

MARYCAIN
12-07-2006, 06:56 PM
I had versed before an endoscopy and you're right - I don't remember anything about it, or even much of the rest of the day. But when I finally got awake, I hiccupped for about three hours straight. Don't know it was the versed or the endoscopy, but the hiccupping was a lot worse than the procedure (LOL).