UPJ w/ retrocaval ureter

[suzycat]

Hi, all! How are all you East Coasters doing? Have you guys had any serious flooding where you are? That storm sounds like the kind where the media reports don't do it justice. Glad you got some sleep, 2plus. Although, if you cooked like crazy on one day, you certainly earned your rest the remainder of the weekend. Do you have to follow the renal diet stringently? If you do, what resources do you use for recipes? I liked to bake, but was never a great cook. I tried some of the renal recipes from davita, but they were disgusting-- and I'm no food snob!
Allie-- how's the migraine? My kidney headaches feel different to me than my migraines. My migraines were always hormonal, and during perimenopause became much worse with the fluctuating hormones. I figure that they should get better when I reach the other side of menopause-- at least they did for my mom. As they say, menopause isn't the problem. PERIMENOPAUSE is the problem-- Menopause is the answer!
Hope all of you have a good day tomorrow. Many good thought going your way, my friends. Annette

[duzford]

Allie -

Spike is doing well and sends hugs your way. I have to figure out how to give him a bath. I was cleaning my closet this weekend and found him a play mate. How are you feeling today now that the storm has passed.

Suzy -

The Noreaster came and went. There is a major mall on the East Coast that got so badly damaged they had to shut for today. Besides that and completely tangling the train systems last night it had little effect on me. It did make for a cold bitterness in the air that was hard to shake. I also noticed that all the stairs I take to get up from the subway seemed impossible yesterday. I was just too stiff and had to cheat and use some of the elevators. This was not possible the whole way as there was flooding in the elevator chutes.

All -

The hunt for a specialist. Hmmm.... Interestingly I was hooked to AAKP which is the national urology site and I accidently clicked on the link for a doc in NY. I sent him an apology e-mail and before I knew it a cyber exchange was taking place. He recommended 2 guys but one seems almost untouchable. He is the Head of Long Island Shore Medical Center or something like that but had to find out any information about his practice. The other guy sounds more doable. He is a pioneer in robotics, transplant, kidey reconstruction, etc and has done that chairty plane where they go around the world to save 3 world children of rare diseases. I forget what they call it. I am in the process of running some checks on him now and may decide to use him. All my other resources seem to run into deadends for me or no responses. Alas the one I found is NOT covered by my insurance but may be under my husband's. [Or so I hope.]

The last two days you mentioned anemia and headaches as I side effect of kidney problems. I am a little concerned. I have noticed that I am getting paler and paler. It became real noticeable today when I but on my foundation and thought maybe I had pulled out the summer pack but no such luck. I have also been really tired lately though I dismissed that due to the insomnia and weather. Even after this weekend of massive sleep I feel like I can take a nap. I will keep an eye on these symptoms and see what happens.

Suzy I kind of follow the renal diet but my problem is the stones I produce require different dietary changes. I am basically on a high carb/low protein diet as a compromise. I get gout from the protein and have to be careful with antioxidants due to the calcium oxalyate stones - leaves my with little choices. Compounding that difficulty, my husband had an earlier pituary tumour that is since gone but was never treated and as such his metabolism can not process carbs that well. We are like Jack Sprat and his wife.

I try to stick to it as much as possible and have learned to subsititute in meals. I had a hard time finding any renal cookbooks but I like to experiment so came up with some of my own. The renal cookbooks I do have use a lot of coffee mate in their recipes. I will relook at them and see if I can offer any advice.

I also use the Minute Men microwave rice. Ready in 90 seconds. I nuke it BUT then rinse it to get rid of some of that sodium. They come in flavors so at least we are getting some variety. If you use the packaged rices only use about 1/3 of the seasoning packet.

Note that if you are on the renal diet, since protein is restricted as are most iron rich foods that can worsen the anemia. Kind of a double edged sword...no?

My biggest complete on the renal diet is I AM BORED!!!!!!!!!!!! As a 1/4 Italian I thought wow pasta, pasta, pasta - yeah right. Ain't exciting anymore!

Anyway hang in there everyone.

[suzycat]

Hi, Guys! I have some good news-- I think! I have mildly elevated cholesterol, and the nephrologist said he wanted to be aggressive about treating it, since my gfr is pretty bad. (I didn't know until this happened to me that most chronic kidney patients-- at least those with ATN-- don't die of kidney disease, they die of heart attack/stroke caused by kidney disease). Obviously, that's not the good news1 The good news is that the cholesterol med I was prescribed is supposed to help my itching! It's a powder which you mix with food, and it tastes fairly chalky-- but I only hve to take it once a day, and if it will cure the itching, I'd eat a box of chalk a day! It will take a few days to kick in, so I'm keeping my fingers crossed that it works! I'm tired of looking like a chimp, always scratching myself!

2plus-- Do they run a routine hematocrit when you get your bloodwork? My hematocrit plunged into the low 20's, so they put me on injections of Aranesp every 2 weeks. It doesn't bring me all the way up to normal, but it DOES help. I can't tell if it made me any less pale, because I'm a red-head and look like Caspar the Ghost anyway.

Allie-- hope todays has been a better day. I feel very fortunate that pain is not part of my syndrome. I admire you guys for the way you all keep going despite the pain.

I'm glad everybody made it thru the storm. It's a beautiful evening here, so I'm going to drag my unwilling body outside and pull at least a few weeds before they take over the garden and start over-riding the house.

Here's to all of us having a good day tomorrow!
Annette

[duzford]

GOOD NEWS!!!

I called the specialist and he agrees to not only see me but he is going to do so on MONDAY afternoon.

Vibes feel good already!

[suzycat]

Hi, 2 plus! Yahoo!! That is TERRIFIC news! I will keep my fingers crossed, beam good juju, scour my back yard for 4-leaf clovers, and whatever else I can thnk of to bring good luck to that appt!! I had a bad night and am late getting into work today (9:30 am my time), so it was great to wake up to good news! Annette