PDA

View Full Version : Kidneys



pberggren1
04-15-2009, 06:21 PM
Hi Everyone:

I got a letter from my Rheumy today. It says:

Dear Phil,

I have asked for an ultrasound of the kidneys in Swift Current, you should be hearing from the hospital there shortly. Please ask you family doctor to do a 24-hour urine for creatinine clearance and protein. I know that you have had some blood in the urine.

I will arrange for you to see the nephrologist again.

Yours sincerely,
Dr. J.J. Markland

I have been feeling fairly lousy the past 3 weeks or so, especially the last 4 days. I slept 12 hours on Sunday, 13 hours on Monday, and 15 hours on Tuesday, and I still feel wiped.

The hospital phoned me about the ultrasound and I think it is booked for May 28. I was half asleep when they called so I will have to call back to make sure.

Any advice from the experts out there like Doug and Sangye or anyone else would be greatly appreciated.

Over and Out,
Phil of the north

Sangye
04-15-2009, 11:11 PM
Well, it sounds like he wants an ultrasound of everyone's kidneys in Swift Current. (Sorry, couldn't resist) :D

Have you had kidney involvement before? I don't remember. I suggest you call his office first and ask what his concern is. If it's along the lines of "Wegs might be affecting your kidneys" then you've got to get the ultrasound appointment moved up.

Meanwhile, you can do the 24 hr urine right away. You shouldn't have to get an appointment to pick up the container at your family doc's and start.

I know two things about kidneys and Wegs : they can be seriously damaged without you knowing it (just feeling lousy and tired, like you are), and you need to act quickly when they're involved. The other folks on here with direct kidney experience can help much more!

pberggren1
04-15-2009, 11:27 PM
My nephrologist said I have hade some damage to my kidneys due to previous WG flare. He was also concerned with my high blood pressure back when I saw him last October. He said there may come a time when I would have to go on blood pressure meds. Well that day came 2 weeks ago.

I will definitely phone my Rheumy today and find out what her concern is.

Thanks,
Sangye

coffeelover
04-16-2009, 12:54 AM
Phil,

Please keep me posted on the Blood Pressure issue as I have the same problem.
Good luck with your conversation witht he doctor and I hope you feel better soon.

Being Neighborly-Lisa from MN

pberggren1
04-16-2009, 01:29 AM
I called my Rheumy's office today. They are not open again until April 21. I will pick up the requisition for the 24-hour urine this afternoon from my GP's office.

I am going to check my blood pressure this afternoon and see what it is.

Thanks Lisa

Over and Out,
Phil of the north

Jack
04-16-2009, 04:18 AM
The main indicator of kidney function is creatinine levels taken over a period of time. In my case, I also had renal biopsies (don't have this done unless you have to, it hurts!). However, I never had ultrasound so I'm not sure of the value of this.

In the early stages of my renal failure, efforts were concentrated on keeping my blood pressure as low as possible and I was also put onto a low protein diet. Unfortunately my kidneys were past the point of no return and failed completely over the following year or so.

There were very few precise symptoms of renal failure in my case, just general feelings of being unwell and tired. At the time, my Wegener's symptoms were masking this, so it went too far before being discovered.

pberggren1
04-16-2009, 09:53 AM
My blood pressure readings were better today. They were 128 to 135 over 78 to 85. I took them at 5 different machines across the city.

Jack
04-16-2009, 04:24 PM
Sounds good. Nothing to worry about there. :)

jola57
04-16-2009, 04:34 PM
Hi Phil, he doesn't say much in his letter only mentioned blood in urine. Was that recent or from before? It may be just a follow up to make sure everything is OK. 24 hr Creatinine and protein are a good indication of you kidney performance.

pberggren1
04-16-2009, 04:39 PM
Thanks Jolanta

jola57
04-16-2009, 04:47 PM
are you too having a sleepless night?

pberggren1
04-17-2009, 09:43 AM
Most of my nights are sleepless. I work nights on Friday and Saturday nights from usually 9pm to 4am at the local Best Western Inn doing security. Even at the best of times I have a hard time getting to sleep.

pberggren1
04-18-2009, 06:24 PM
My blood pressure today was 120 to 132 over 72 to 85. Yee Ha!!!

coffeelover
04-19-2009, 03:20 AM
Congrats on the low BP reading today Phil! I am happy for you!

I avoid having mine read as I know it will be high. I am already on two BP meds. If I could only get off that dreaded pred, then I am certain it will be at more normal levels.
If I only did not have to work and could lay around in the sun all day...that would help too.
If my employees were all perfect and my kids were wonderful then I am sure my BP would lower.
If I did not have WEGS I am certain I would have a lower BP.
I could go on, but I am trying not to stress myself.
:D:rolleyes::D coffeelover lisa

jola57
04-19-2009, 06:03 PM
Lisa how high is high for you. Usually mine was 106/56, but since WG it was 125/62 for a long time, its now 167/96 and when I went to my GP he wasn't that concerned.

Jack
04-19-2009, 06:50 PM
167/96 is pretty high.
I always work on anything above /90 is too high and anything over /100 needs intervention.

coffeelover
04-20-2009, 07:27 AM
My BP at my last visit was high, trust me. I can't remember the top number as I become most concerned with the bottom number that was 100. That is not good, but I hate my rhuemy's receptionist, so my bp rises every time I see her. (hate is a big word....let's just say she annoys me, and yes I did tell my rheumy about my annoyance) You'd think a WG patient would have more tolerance than that wouldn't you? Now you all know, I am not a nice person. sorry!
If my "rash" does not clear up shortly, I will go to my GP and then discuss my BP....promise.

LIsa

jola57
04-20-2009, 06:16 PM
Lisa, have you used any new hygene products.

pberggren1
04-22-2009, 02:03 AM
I talked with my Rheumy's secretary today. She said that the Doc wants the ultrasound and 24-hr urine to better see what is going on and why there is blood in the urine. I see her again on June 10 and will probably see my Neph that day as well. Kill 2 birds with 1 stone!

My BP is good again today. Yee Ha!!!

pberggren1
04-22-2009, 08:57 PM
Even though my blood pressure seems to be going down and stabilizing, I still have that heart pounding in my chest feeling. It is keeping me up tonight.

How I would love to be normal again. But as many of you say now, this is the new and ever changing normal with our new best friend.

jola57
04-22-2009, 10:34 PM
Ah the old pounding heart. Sometimes I feel like its going to jump right out.

Sangye
04-22-2009, 11:35 PM
Assuming you don't have something medically wrong (pretty easy to rule out with regular bp readings and echocardiogram-- a must for Weggies), typically a pounding heart at nighttime is due to mineral deficiency. To resolve it, I wouldn't recommend using OTC minerals from the store-- you're likely to create new imbalances, and they're usually poor quality anyway. If you can't find a holistic doc to evaluate you and give you exactly what you need, you can safely try small amounts of kelp.

Don't do it if you have any thyroid issues (high or low), and anyone on coumadin should also be careful-- it can be high in vitamin K. If you use tablets, start with 1/4 to 1/2 a day. You can also get it in powder or flakes and sprinkle it onto food--again, don't go nuts with it. Kelp is famous for lowering high bp, too. Start small and monitor your symptoms and your bp. Don't take more than the recommended daily dose on the bottle, and even that may be too much for Weggies.

pberggren1
04-23-2009, 12:38 AM
What is coumadin? How does a holistic doc evaluate a person? Thanks Sangye.

Sangye
04-23-2009, 01:11 AM
Coumadin is an anticoagulant (blood thinner) for people who've had blood clots or are at risk for them.

Holistic docs evaluate patients using the history (that's always #1), symptoms, treatment, and a number of other ways depending on their specialty. They ask a lot of questions that help narrow down specific imbalances. Then depending on their specialty, they'd add in more. An acupuncturist would also take the pulses and look at the tongue, skin, temp, etc.... A chiropractor would also check the spine, alignment of organs, muscle balance, cranial bone alignment, nutrition, etc....

There are more types of holistic docs (eg naturopaths) but you can look them up and see all the great things they do.

Doug
04-23-2009, 01:49 AM
Phil- It's good you are showing lower blood pressure as out of control blood pressure can further damage your kidneys. Since you have that issue to start with, I'm surprised you weren't on BP medication sooner. Unless, of course, you didn't have BP issues! I didn't have BP issues until they put me on Prednisone, our BFF's BF, which was early on. Doing a stack for 24 hours is fairly consistent with what I've experienced over the years. I hate doing them, perhaps because the idea of saving urine in a container for 24 hours turns me off. There was one time, however, when my red cell casts moved slightly over what had become my new norm and my doctor wanted to be ahead of the game if other things were about to take off, too, that I had a mildly funny encounter with a non-Weggie. I had to start the collection at 2 AM to accomodate the lab testing the urine. Since I was not going to save the urine container in my refrigerator till I filled the requirement, I decided I would go to a local convenience store and get ice. I had no idea how much ice it'd take, so I bought three large bags. This was Saturday at 2AM. In Nebraska, bars close at 1 AM, so the guy looks at me and the ice, makes a big assumption, gives me a "heh, heh, heh" kind look as I paid for the ice. I can only imagine the "party" I was going home to would have been a big disappointment to him!

Jack
04-23-2009, 04:40 AM
I take Ramapril to lower blood pressure and protect kidneys and Atenolol to stop the "pounding heart" feelings. Works a treat! :)

coffeelover
04-23-2009, 11:34 AM
Hey Phil! MY BP today was 134/80. Not bad for me.....I must have followed your lead.

I find it interesting that a pounding heart can come from a mineral deficiency. Thanks Sangye for keeping us informed of these unknowns. I just thought it was an anxiety attack of sorts????

I got some fungal meds for my rash and an antibiotic today.

LISA

Sangye
04-23-2009, 11:44 AM
There's a fungus among us???

An anxiety attack can also cause a pounding heart, but you would also feel anxious. A lot. I've had a couple in my life and you can't miss it! And they don't limit themselves to nighttime.

The reason why a mineral deficiency causes nighttime heart pounding (in particular right as you're trying to fall asleep) is that minerals are needed to balance the part of the autonomic nervous system that tells you to sleep and relax. It's the opposite of the fight or flight part. So you try to fall asleep, but your body say, "Nuh uh. WAKE UP!"

coffeelover
04-23-2009, 12:39 PM
Thanks again Sangye for that very useful information on mineral deficiency.

Yes....a fungus among us. Ever since my trach surgery I have struggled with fungal issues. OOOOOOOhhhh how I long to not have trach issues. soon, soon I hope!

pberggren1
04-23-2009, 12:52 PM
Thanks Jack. I will have to look into Atenolol.

Sangye, do you know of anything natural that can act like Atenolol like Jack describes?

I wonder what or if any mineral deficiencies I might have.

Good to see your BP is good today Lisa.

KtheC
04-24-2009, 09:39 PM
High blood pressure is hereditary for me and have been on meds for it for years. At point I had lost a great deal of weight, 50lbs, due to exercise and diet and got off the meds for about a year, then had to go back on them. I was taking triam. During recovery my blood pressure was fine until my kidneys started working again, then it went back up, around the 160-170 range. Lisinyprol (spelling?) was prescribed, 40mg dailey. This has helped a great and so has going off the prednisone. I am now around the 130-145 mark which is better.
The triam worked better but isn't good for the kidneys.
I also used to take a half aspirin and niacin daily to help with the bp. I am going to ask my doctors if this should be started again to assit in lowering the bp, might not be possible if they don't play well with the meds I am currently on.