View Full Version : Newbie in San Jose, CA
11-19-2006, 05:53 PM
Hi Everyone. I'm Rob.
My whole life was just turned upside down in a matter of 6 weeks. In August, I was in great healthy. In September, I started noticing swelling in my ankles and my blood pressure jumped to 140/90 from its normal 120/80. I was about to turn 40, and my doctor told me that "these things just happen as you get older" (even though blood tests showed I was anemic!)
Within two weeks, I had severe fatigue and a constant nightly temp of 100 degrees. I had had a bout with lymphoma in 2000, so I went to my oncologist for a second opinion. I feared that the lymphoma was back and had spread. Thank God for my oncologist. He quickly diagnosed it as a autoimmune issue and referred me to a rheumatologist, who - within two day - diagnosed it as Lupus.
I was put on Cellcept and Prednisone and many of my symptoms cleared up quickly. I still was suffering from severe arthritic pain in my forearms and legs, though.
Recently, I underwent a kidney biopsy that left me in the hospital for two weeks because a vein in the kidney was punctured during the procedure causing my bladder to fill with blood. Not fun!
Towards the end of my stay my nephrologist got the results of the biopsy. It was class 4 SLE. He had me stay three more days to begin chemotherapy. They took me off of Cellcept and gave me a huge IV dose of Cytoxin and Prednisone.
The only problem I have now is the result of three days in ICU with an IV and minimal kidney function. My legs filled with fluid and are twice their normal size! I am on a diuretic (Lasix), but the water is not coming out. I can barely walk from one end of the house to the other. So that really sucks.
Other than that, I am not doing too bad. My dad is into researching things on the internet, so he has been printing up medical articles for me to read. My mom is a great cook and has been making sure I am eating right. And, I have the support and love of all my family and friends.
I was wondering if there are any support groups in the San Jose area?
I would also like to talk to others about diet because I am on a low-sodium, low-potassium diet and the food choices are really starting to narrow. I could really use some recipes and shopping advice.
11-19-2006, 07:25 PM
Hi, Rob - I certainly feel for what you're going through - I do the cytoxan/mesna/prednisone routine regularly. I don't have as much of a problem now, but when the kidney problems first manifested, my legs were so puffy that fluid would literally leak out from the pores. Cytoxan can have some unpleasant side effects, but it's very effective. You might need a stronger diuretic to really get the edema under control. I also had some physical therapy with a massage therapist to help improve my circulation and help some of the fluid drain off. Try to rest quite a bit with your legs elevated - it will help reduce some of the swelling.
I'm allowed to have some sodium now but still have to catch the potassium pretty carefully. Unfortunately, the low sodium low potassium eliminates a lot of restaurant and convenience foods as well as things like canned soups, tv dinners, etc. But since your Mom likes to cook, she probably doesn't use a lot of those products anyway. I assume your doctor gave you a kidney diet sheet, and referred you to a nutrionist? If not, let me know and I can run through the basics with you. It isn't hard once you learn how to read labels, but for a long time I carried a little nutritional guide with me when I went shopping to check the sodium and potassium content of every food. Fortunately, many natural food and speciality food stores are starting to carry a better selection of low sodium foods, so you have a few more choices now. The potassium is more of a problem for me because I love potatoes, tomatoes and yogurt - all high potassium. It is possible to have potatoes if you don't mind soaking them overnight, then rinsing, then cooking - usually by that time I've lost interest in the potato.
Is there a particular type of food you enjoy, or something in particular you are missing? There are a lot of cooks on the forum, and I imagine between all of us we have a lot of cookbooks. So please let us know your particular food interests, and we will try to provide recipes that fit your diet. I use a lot of different herbs and spices that add flavor without salt. The one thing it's really important to remember is that most "lite salts" or "salt substitutes" are very high in potassium, so you have to stay away from them too. The Mrs. Dash products are generally safe to use, but it might take some experimenting to find a blend you like.
11-22-2006, 05:31 PM
Thanks for your response. It is great to have others to relate to.
I am handling the Cytoxan well but the large dose of Prednisone they gave me in the hospital made me feel really sick to my stomach. I am taking smaller doses now, usually with dinner, so I am handling it much better.
I will have to look into the physical therapy massage. I think that would help my legs a lot. I have a follow-up appointment with my nephrologist on Dec 6th to go over the rest of my chemo schedule and other things. I will talk to him about seeing a nutritionist.
I think one of the foods that I miss is pizza. I usually eat chicken or veggie pizza as I have never really been a fan of pepperoni or sausage. I would love to be able to make my own but was wondering what to use instead of tomatoes sauce. Also, since I can't eat a lot of canned soups, I would like to be able to make my own. I was wondering what kind of flavorings I can use so it doesn't taste like water?
Happily, I am a big salad eater so I can still enjoy that (minus the spinach and tomatoes). And, I am happy to know that I can still eat potatoes if I plan ahead.
11-22-2006, 07:15 PM
I'm posting a link to a site with a lot of recipes okay for a renal diet, including a low sodium low potassium recipe for homemade pizza. Since your mom likes to cook. she shouldn't have any problems with it. And you can jazz it with some low potassium veggies like snow peas, or some grilled chicken.
You can find a variety of low sodium products at most natural food stores, and several online suppliers too. Some of the big chain natural food stores like Wild Oats even have low sodium, low potassium convenience foods. If you use low sodium or sodium free chicken or beef broth (available in cans) as a base, it's pretty easy to make good homemade soups by concentrating on the low potassium veggies and avoiding dried beans like pintos. Mrs. Dash has a huge line of seasonings, all sodium free, and their website also has a lot of recipes. They are pretty good about listing nutritional info for the recipes, so you can keep track of your total sodium and potassium. Other safe seasonings are garlic powder, onion powder, pepper, pure spices, pure herbs, and Tabasco sauce. Maple syrup is fine but avoid molasses.
You can use high-potassium vegetables like potatoes in small amounts if you "leach" them first by soaking them in water overnight, then draining the water off and rinsing the vegetables before cooking them. This allows you to make decent mashed potatoes, etc., but baked potatoes are pretty much out. Instead of potatoes, I use a lot of rice because it comes in many exotic colors and varieties - not just your bland minute rice.
For any medium or high potassium vegetable, the more water you can use for cooking, the better, this help reduce the potasssium. You can substitute unenriched rice milk in almost any regular recipe that calls for whole milk, so you can make puddings, etc. You can also get unsalted, sugar cured bacon, if you are craving that. Unsalted corn tortilla chips come in several flavors and brands - you can mix your favorite Mrs. Dash seasonings with sour cream for a dip. Fruit sorbets, sherbets, popsicles, gum drops and jelly beans, and most hard candies are okay too, although the sugar might be an issue.
Remember when reading labels that a product may not always say salt or potassium on the label. So you have to look for the words salt or sodium, or sodium chloride, or the symbols Na or NaCl - potassium may be represented by K, K+, or KCI. Many prescription and over the counter drugs also contain sodium and/or potassium, so always check with your pharmacist.
Did your doctor give you some dietary guidelines or other guidelines to go by? If not, here are some links that might be helpful.
www.kidney.org - many helpful articles and reference materials
The Cleveland Clinic has alsao published a cookbook called Creative Cooking for Renal Diets. Cooking for David is another renal diet cookbook. And most heart patients also have the same dietary restrictions, so the American Heart Association cookbook has many recipes okay for a renal diet.
Hope this gives you some ideas and inspiration.
11-22-2006, 07:40 PM
Here's a link to some information on low sodium soups and other products - just remember to also check potassium content - generally bean soups and chilis with beans will have the highest potassium content.
Hope this helps!
11-23-2006, 07:56 AM
Hi Rob -
Welcome to our family. Marycain has given you excellent advice and suggestions (as she always does), so I am just addressing your question about Lupus Support Groups in San Jose. Perhaps if you contact the Northern California Lupus Foundation (AKA: Bay Area Lupus Foundation), they can direct you to a support group close to you. Here is their information:
Telephone, Fax, E-Mail
1(800) 523-3363, toll free nationwide
(408) 954-8129, main fax
(408) 954-0204, Executive Director’s fax
Location and Map
2635 North First Street, Suite #206, San Jose, CA 95134-2032
The Foundation is located at the corner of Trimble and North First Street, next door to a Bank of America. As you enter the front entrance, you may take the elevator (to your right) or take the stairway leading to the second floor. Our office is located on the second floor, at the end of a long corridor to your right, in suite #206.
Peace and Blessings
11-23-2006, 11:48 AM
Just wanted to welcome you to this forum and to encourage you to stay around awhile as there are lots here who would love to provide you with information, support and sharing you must need right now. I am sorry that you are ill but am glad to hear you have family support, assistance and a good medical team working on your behalf. I know you will begin to feel better soon.
I see that Marycain has provided you with lots of information re cooking and recipes, she is the best resource and a wonderful person as is Saysusie who is the instrument behind this forum.
Sending you positive energy today, hopes and prayers for improved health.
11-28-2006, 12:41 PM
Thanks for the welcome, beautifulbeluga. It is great to have this forum of people to talk to. Even though family members and friends are very supportive, they won't always know what I am going through.
Saysusie, thanks for the information on the Lupus Foundation. Their office is only a few miles from where I live. I actually used to work for many years in the office complex on the opposite corner (until the dot com bubble burst).
Marycain, thanks for all the information on recipes and food tips. That is a great help. It gave me some great ideas of things to try. I got a referral from my nephrologist, yesterday, to meet with a nutritionist next week.
I am also scheduled to meet with a physical therapist. The swelling in my legs is still really bad. I had my doctor take me off of one of the blood pressure medications because my dad was doing research on it and found multiple medical journals that noted a side effect of this particular medication was edema. I felt that the blood pressure medication was canceling out the effects of the diuretics. Besides, one of the diuretics is used for high blood pressure already. I guess I am a little frustrated because it has been three weeks and it is the only thing stopping me from getting back to some of the regular activity in my life (driving, living in my own place, and going out to the grocery store). It is difficult, because I was so active and independent before all this began. It is difficult to just sit around. Of course, I am very thankful that the sitting is not being done in a hospital. After two weeks in there, I was ready to climb the walls.
I guess I have to learn to take things one day at a time. (For some reason I starting thinking of that song from that old claymation Santa Claus and Rudolph movie... "Put one foot in front of the other and soon you'll be walking out the door!" Too funny!)
Thanks again, everyone.
11-28-2006, 01:19 PM
Hi. Rob - I'm glad you're meeting with the nutrionist - hopefully you will be able to find substitutes for most of your favorite foods.
If you are not having any problems with shortness of breath, try to keep your legs elevated when you are sitting and lying down because this helps the fluid in your legs redistribute itself. You might also talk to the physical therapist about using a pressure reducing mattress or a wool pad on your bed - swollen skin is more fragile and makes you more vulnerable to developing pressure sores or skin breakdown on your legs - so you have to be extra careful. A cut or scrape in a swollen area will take longer to heal.
unfortunately edema is a side effect of many medicines prescribed for lupus - including prednisone, calcium channel blockers and other blood pressure medicines, and non-steroidal anti-inflammatories like ibuprofen. So it can be trial-and-error to figure out whether swelling is related to kidney involvement or medications. So your doctor may have to try other meds to see what works best for you.