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Hello everyone, my name is Dawn, I'm 35, and live in Halifax, Nova Scotia (Canada). I'm a bit new to all this, but I just have a few questions. I went to see a neph for the first time in Dec 05. I knew I had cysts on both kidneys before then, but that was when it was confirmed. Anyway, he looked over my US and blood work, took some information about my self and my dad (has pkd and waiting for kindey failure), and I was expecting him to say that he'll see me again in a year or two to see how everything's progressing, but he didn't. He just informed me that I shouldn't take ibuprofin, told me that I would need to take extra antibiotics when I have a UTI, and that I don't need to see him again until my kidneys start to become bothersome or if I noticed anything different!!! Is that normal??? I already know about watching my B/P, but what else should I be watching for??? My dad didn't know he had it when he was my age, and he told me that before he was diagnosed, he was just a bit tired and felt uncomfortable (not sore) at times. I didn't have any form of bloodwork taken since Dec 06, but my creatin levels were fine. How often should I get an US and bloodwork done? Also, my dad's neph said that he looks like he swallowed 2 footballs, and that he's only seen one other person with PKD, in his long career, that was bigger than my dad. Does this mean that, since I got it from him, I'll probably end up the same way and have the similar problems (he had 3 heart attacks, always tired & sore, etc)??? The Dr's say that his kidneys should have failed a while ago, but they're still holding on! He's 57. Anyway, if you have any suggestions of what to look out for, it would be greatly appreciated. Thanks a bunch! Dawn |
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Dear Dawn-
Hi.
I don't know how many nephrologists there are close enough for you to get to, by
where you live. But offhand I'd say it's time to find a new
nephrologist. For PKD- it's commonf for good nephrologists- while
they might reasonably say there's no need to worry etc. and - while in a few
years there will be meds available- right now no medications to take etc.
STILL- if you have pkd, you should monitor your bp regularly- because if it goes
up, getting it regulated is very important to keeping your kindneys healthy.
A good nephrologist would also tell you to get a blood and urine test
once or twice a year to also monitor kidney function- so that if there are any
irregularities- which you actually might never even have, but just ini case-
they can diagnose and treat them early on. Also, since there are medication in
testing that have the promise of stopping or dramatically slowing the
progression of PKD- a good neph would also let you know if there were studies in
your area- or at your bp and blood and urine screenings- at least keep you
informed so that you can find the one that's right for you- as soon as they
become available.
Is
there any way you can search for a nephrologist close enough for you to be
monitored by once or twice a year at least- who is familiar with, or even,
specializes in the treatment of PKD?
Since much information on PKD is fairly recent- in the past 10 years or so-
thanks in very large part to the PKD Foundation- for getting the disease
known, and funding and promoting research- doctors who don't see too many cases
might not really be up on it. You want the doctor who is.
The above is just 'my
opinion'- and I'm sure many people here might know more, or be familiar
with Nova Scotia etc. and be able to helo yuu- but the group is always
here, and you can always ask anything you want at any time. Welcome!
-jeanne
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| | | From: lbinki | Sent: 9/20/2007 3:33 PM |
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I appreciate that your Doc is not an alarmist...but in the end its up to us
to decide what is good care. You've gotten some wonderful information from the
family here and with that you can arm yourself and decide what you feel is the
best timing for testing etc. Talk to your Doc in hopes that he will respect your
request.
Welcome home!
Linda
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like your doctor I am not an alarmist either. my mantra is, "if it ain't broke, don't fix it." how many of us, myself included, lived a good long time without knowing we had PKD. I do believe tho, with the knowledge you have it, you should have an annual visit with your nephrologist and have bloodwork done. other than living a healthy life, no smoking, drink in moderation or not at all, keep an eye on your blood pressure and if elevated see your doctor, drink lots of water, follow a healthy diet but go easy on the 3 bad things, fat, sugar and especially salt, get lots of exercise, go easy on caffeinated drinks, especially soft drinks like colas which do you no good whatsoever. you may want to get into a study program for Tolvaptan which may slow or stop cyst growth. all that said, welcome to the best support group you can possibly find. |
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Dawn, Hopefully you're not waiting for anything and this is all that will ever happen! Your doctor gave you some good advice on the ibuprofen and blood pressure. All I would add is avoid all non-steroidal anti-inflammatory (NSAIDs) medications including naproxen and paracetemol (sp?). Stick with acetominophen for pain relief. And if you ever need a CT Scan, don't let them use IV contrast unless it's a matter of life or death (CT IV contrast is not very kidney friendly, but if it's an emergency, your life is more important!). I was told the same thing you were when I was first diagnosed with PKD except at the time the link between ibuprofen and kidney damage had not been made. I saw a nephrologist when I was first diagnosed and then didn't see one for about 5 years after that. But my general practioner monitored my kidney fucntion annually and blood pressure quarterly (and told me to get a home BP monitor and track it weekly especially as it started to inch upwards). When my BP started to rise, it was the general practioner who did the research to figure out which blood pressure medications were the best for PKD patients (ACE inhibitors and angiotensin receptor blockers/antagonists (ARB/ARAs). The only time I saw a nephrologist between 1988 and 1991 was just before I was transferred to Norway and I wanted to talk with a nephrologist to be sure my treatment was on track before I went to a remote assignment (US Air Force) and find out the latest on PKD research (no internet at the time). Turns out he agreed with everything my family practioner had done, said he couldn't have done anything better, and alas, didn't have much news to report on PKD at the time. I didn't see another nephrologist for 3 years and then it was only because I developed a kidney infection and large kidney stone. By then my function was starting to decline a bit (got better after the stone was zapped and the infection cleared) and I've been followed every year, more or less, since. I currently have 35-40% kidney function. Unfortunately, I have chronic kidney and liver pain and some other unrelated complications (migraines that are unresponsive to most medications so finding the right treatment and ensuring they're also kidney friendly is a challenge). I'm very fortunate to have a nephrologist who serves as my primary care manager, but I'm also seen at a military teaching hospital (I retired from the US Air Force in Dec 05). It's a unique situation and my doctor doesn't do this for many of his patients (until recently I saw an internist and only saw the nephrologist once per year or when there was a specific kidney problem although my internists always consulted with the nephroloigst if there was a question if any medication was kidney friendly). I'm just downright lucky to have found the perfect doctor (I wish I could clone him for everyone). For now, most of your follow ups at this point can be with a family doctor, even for an annual blood and urine check for kidney function...and be sure to ask for cholesterol, glucose and all those other healthy body tests too; we need to be sure we're taking care of our entire body! Watch your blood pressure, see your doctor if you have signs of a urinary tract infection or pain in the kidneys which may indicate a kidney infection (you don't always get a UTI first). If you do develop an infection, there are certain antibiotics that are more effective and should be used in PKD patients than others. Drink lots of water, reduce your sodium intake, eat healthy, get plenty of exercise and fresh air and enjoy life! All things in moderation is the best idea and avoid kick boxing and contact sports to avoid damage to the kidneys.
Not everyone develops kidney failure, you and your father included. Some of us just have PKD and life goes on indefintely, at least in terms of kidney function. There is no set time or date when kidneys fail and if your father's haven't failed yet, it's definitely not a reason to complain! Hopefully the kidneys will last forever!
Now his heart, that's a different story and his 3 heart attacks and possible residual damage from those may be contributing to why he's so tired and sore. These are issues he needs to discuss with his doctors, there may be something they can do to help. They're also all the more reason for you to maintain a healthy diet and get plenty of exercise, keep your cholesterol in check, and watch your blood pressure. So often we forget that we're a system of systems and parts of our body other than our kidneys can act up and cause problems. No, there are no guarantees you will follow your father's pattern in anything other than possibly eye color and the basic fact you have PKD. Not every member of the family's disease progresses the same in any sense, be it kidneys or heart issues. You may not develop football kidneys, you may never have any heart problems. But knowing what you do, you have an opportunity to take care of yourself and do what you can to keep yourself healthy. In addition, medical science has advanced dramatically in just the past few years, as has our knowledge of healthy eating, the need for exercise and more. The diseases and problems that affected our parents may never affect us, or may be rapidly treated and actually cured (alas, not the PKD....yet). Bottom line of my novel, it's okay if you're not followed by a nephrologist yearly. But do develop an excellent relationship with your primary care manager and ensure your kidneys are still monitored along with the rest of your systems, and keep that BP under control. And as your nephrologist said, if there are any problems or concerns, go back and see him. Oh, and get copies of all your lab work and ultrasounds. Over time you and your doctors can track your kidney function and see how you're doing. Just remember this is generally a very slowly progressive disease, so the day to day, or even year to year changes aren't as important as the overalll trend. Ultrasounds are interesting and do show the size of the kidneys, but once you're diagnosed, you don't need more US or radiology testing unless you have a problem. There is no benefit to repeated testing as the symptomatic treatment remains the same regardless of the size or shape or number of cysts in the kidneys. As for PKD specialists, there are outstanding ones in Boston who you may be able to see or at least consult via email with. In addition, there is the tolvaptan (TEMPO 3/4) trial that is looking at a blood pressure medication not yet on the market that has been shown to reduce the progression of PKD kidney cysts in rats and hopefully humans as well. The closest study site for you is Boston. There is also the HALT PKD trial going on that is looking at the effectiveness of ACE inhibitors (lisinopril) and ARBs (losartan) and the progression of cyst development as well (again, in Boston). You don't have to be a US citizen to participate and in some cases, they will pay for your travel to/from the study site (you may need to go to Maine to catch the flight; I don't know if they'd pay for you to travel out of Halifax). You can find more information on the clinical trials at www.clinicaltrials.gov or by going to the PKD Foundation website and clicking on the clinical trials link. You can also find much more information on PKD and the latest research, treatments, testing, and more at the PKD Foundation website, www.pkdcure.org. If you click on Events and go to National Convention on PKD, you can view all the presentations from the convention in June. Most researchers also put their contact information at the end of their presenation and are happy to answer questions and/or provide referrals to doctors near you (even in Halifax!) who are knowledgable about PKD. Well, enough for the novel.... Welcome to the most incredible support site on the internet. I hope you find this place to be a source of information, support and reassurance, as well as a safe place to express your concerns, thoughts, hopes and fears. I've been a member since 2004 and find this to be an amazing community of friends. Best wishes, Ruth |
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| | | From: KatieO | Sent: 9/21/2007 3:04 PM |
Hi Dawn, I would recommend you see a nephrologist yearly for a check and bloodwork as long as your renal function is fine. A nephrologist would recommend an ultrasound whenever it's needed. As for what medications you may or may not take, that should be advised by your nephrologist but make friends with your pharmacist. They're a very knowledgeable resource. If you're questioning your nephrologist's advice, please seek a second opinion. Other than that the following should suffice: - live healthy
- eat healthy - eat your food to as close to its natural state as possible
- drink plenty of water
- avoid sodium (foods that are canned, pickled, cured, packaged, pre-prepared, and if you go to a restaurant ask for everything unsalted)
- check your blood pressure regularly
- get adequate excercise
- avoid soft drinks with phosphates in them (they're tough on your bones which can also be affected by kidney problems)
- try to cut back on caffeine
- don't smoke, if you do then please quit now because it'll only be worse later and none of us can afford to deliberately compromise our health
- have fun!
The above of course is my personal opinion. |
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| | | From: barb | Sent: 9/22/2007 3:47 AM |
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Dawm. if your kidney function is in the normal range (80-120) then he probably would not see you for a while unless there were problems. If this is so, I am very surprised that he did not say to see him a a couple of years unless your GP is ordering at least yearly blood tests.
While heredity does have something to do with the rate of kidney failure and the size of the kidneys, lifestyle and environment are also figured in. My daughter is 34 and her kidney function is in the low range of normal and she has high bp. My son is 31 and he's down to 28% function, has taken bp meds for years and has huge kidneys. My kidneys did not get all that huge until after my tx.
Barb
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