Hi, I saw the nephrologist for the first time yesterday. He told me I have Stage 4 as my diagnosis. My GFR was 29 a couple months ago but it was 35 just 5 months ago. The Dr. said at this point it drops fast and can't be stopped from progressing downward. Not encouraging news but he was very nice and forthright.
I have my kidney disease from my Autoimmune Disease called Scleroderma where the body attacks various organs such as heart, lungs, and of course kidneys. That makes me ineligible for a transplant when that time would have come.
I also now have CHF and have pulmonary scarring as well. I guess I have several organs not functioning well.
Seeing the Nephrologist yesterday kind of hit me hard today with a major reality check after all the info is sinking in. Today I had to try on over 10 pairs of sandals to find one pair of flip flops that finally would fit. It seems odd but not being able to slip on a pair of cute sandals with my shorts to go run an errand has made me more upset than being diagnosed with any of my illnesses over the past 30 years.
Maybe it's sinking in that things have changed and will never be the same again. I live alone with my kitty whom I love dearly. I used to be concerned about what would happen to him if anything happened to me. Now with my kidneys failing I'm actually worried for myself. Sorry I guess I needed to vent.
The Nephrologist changed my Furosemide to HTZ (hydrochlorthyazide). He also started me on Prednisone low dose of 5mg to help with the inflammation in my kidneys from my autoimmune disease, and is going to check with a Rheumatologist about putting me on CellCept which is an anti-rejection med for transplants but also works for autoimmune diseases. His theory is that the CellCept might slow down my immune system's destruction of my kidneys.
I wondered if anyone else takes CellCept, and what do you all do about shoes? Do you buy some medium width and some wide width? So many things to learn.
At least I've be a vegetarian the past 30 years so I don't have to do any dietary changes, I know that is hard to do.
This is my first new post, but I have answered in a few threads lately.
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Sophiebun11
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HI Shophie,It is sometimes the little things that remind us of how fragile we are. I am sorry you are going thought this. I would check and get a second opinion on the use the medications this doctor is prescribing. See a rheumatologist soon because there maybe better drugs for you that at less harmful to the kidneys. Just a suggestion.
Hi, thanks for your kind reply. My Nephrologist is referring me to a new Rheumatologist. I moved to a new part of the state a couple years ago and haven't found a new Rheumatologist, I had a great one before.
I will see if my Internist thinks I should see another Nephrologist, however he referred me to this one saying he is the best in the area and it took 2 months to get in. Now I'll be seen monthly since I'm an established patient.
I just tried the Hydrochlorthiaze for the first time today and got a splitting migraine and ringing ears 20 minutes later. I have a call in to the N. about going back on Lasix. Migraine is a problem I've dealt with most of my life and I don't need a daily one now due to meds.
Thanks again for the support. I am so happy I found this forum.
Thank you so much. I will definitely see about a second opinion. I'm not giving up. I am proactive and asked my Internist for a dietician referral before I even saw the N. It seems like Drs. sometimes tell you the worst case scenario at first so in case it happens you won't come back and accuse them of not warning you. That's what my kitty's vet told me she does. I think it probably applies to Dr.s as well : )
I appreciate your reply and hope for the best outcome for you as well.
Thanks WinJ3 for the tip. I'm happy to hear the book helped you. I saw it mentioned in some other places here and ordered it on Amazon. I should be receiving it in a day or two. I look forward to reading it. I think I'm doing the diet part ok since I'm a vegetarian but anything else I can change to improve my health or attitude or gather new info is well worth the investment in the book. I saw on Amazon there are also a couple companion cookbooks. Thanks again!
Same boat. Gfr at 22 was 26 3 months ago. Bun 39. I lost my wife to covid and have been trying to recover from the same for 10 months. People tell me they care and need me. This is what keeps me going. Maybe we can help each other. michael from minnesota.
Michael I am so sorry for your loss. It is good you have a large support system. Grieving is very stressful and hard on the body. When my father died at 60 from cancer my mother found it helpful to join support groups. We all need to grieve in our own way. All of us here support you as well as those in your personal life. Keep taking care of yourself and accept the help and support from those around you. All my best to you.
Hi Sophiebun11! So sorry to hear about the situation you're facing. I appreciate your nephrologist's thought process...Cellcept is indeed used with kidney transplants along with prednisone among others to keep the body's immune system from attacking the new organ. In your case, your immune system is trying to take down your existing kidneys. In either case, Cellcept might well put a stop to the attack. Your nephrologist is obviously interested in your situation since he's going to check out his theory with a rheumatologist. So you have nothing to lose and a lot to gain in my humble opinion by seeing what these two specialists conclude after brainstorming the situation. The drugs in question are familiar to me as I'm a caregiver to my hubby who recently received a kidney transplant. Sending encouragement your way that a new approach of some sort will work out positively for you.
Thanks Darlenia. I appreciate hearing your first hand knowledge and thanks for the encouragement. All my best wishes to your husband, he's lucky to have your support.
Hang in there. Your doctors seem to me to be trying to figure things out. At least, they're consulting with each other. I cant get mine to do that. Glad to see you are proactive. Keep it up. I wish the best for you. My GFR keeps going down, too, and it's a bummer because my emotions go with it! But, I realize stress can be an important factor, too, so I'm trying to stay positive. About the shoes: go out an buy a nice, new pair that fits. Nothing like "retail therapy " to lift your spirits. Works for me all the time. Lots of love and best wishes and hugs for your kittie.
Right you are about the "retail therapy"! I had that exact same thought yesterday and went online and bought a really cute pair of booties for winter in a size "wide". They are something I would have purchased for myself in a medium width so that was a good excuse to get new shoes. I never used the "fat feet" excuse to shop before. I did cheer me up. At least that solved that problem for the cooler months ahead. I'll look forward to picking out new sandals next spring. I'm sorry to hear your Drs. aren't working together to help you. The N. also told me he heard crackles in my lungs and said I have heart failure from the kidneys or autoimmune so he referred me to a cardiologist. I haven't received that appt. yet. But they are all in the same medical network and all my records are in the computer they can access and see what the others are doing and they send notes. I get to read all the lab tests and office notes online as well. It's a good medical network.
It is important to have an entire team working for you. I'm sorry your GFR is dropping too. My N. said once it hits around 30 it starts to drop faster. So I guess it is to be expected except when it happens to yourself!
Best of luck to you. Thank you for including thoughts of my kitty in your reply, that was sweet of you and cheered me up. Henry really helps keep me positive when I start to have a pity party. I don't want to stress him out.
About my medical team: I have the best nephrologist and consider myself very lucky. Frankly, my kidney doctor believes I can raise the GFR back to 3 again with right diet. I keep going off it. Working on the cardiologist and he'll come along soon. Looking for a new primary and will try to get a good one soon.
I'm trying to go almost all vegetarian which I haven't been doing completely. Hoping that this may slow the downward slope. But, I read that so many people on the forum last years with cfr 4 and 5, so I'm staying positive.
Love your new shoes for Fall. Hope you can return to medium come Spring. Henry sounds like a sweetie. My ginger kitty, Jesse, is a sweetheart, too, as well as a prince!
My Henry is a ginger as well. I read that 99% of gingers are boys. I've always had boy kitties, but I have had a few girl house rabbits (hence my handle name after one of my bunnies).
I hope you find a great new primary. My new primary is really great he really took charge of my kidney problem and referred me immediately to the N.
I hope you improve, that would be great. I have hopes of that, still kind of do but I hope I'm not kidding myself. I think my autoimmune disease muddies up things.
Good luck with the diet. Maybe thinking of it as a diet is what makes it harder. There are so many delicious foods to eat on a vegetarian diet. Many people tease me that as a veggie I must live on salads but that is not true at all. I have pretty much been a vegetarian since I was around 8 or 10 years old. I had a pet chicken and she was in the patio flapping her wings laying an egg and I looked out the window from the dinner table to watch her. We were having chicken for dinner that evening and I was eating a wing. I had an epiphany and left the table. I never did eat her eggs. That did it for me and chicken meat. Then I put it together with all animals. I don't wear leather and the whole bit. I have been vegan but ended up lacking vitamins so I am more vegetarian because I add a little dairy to my diet.
I love reading stories of inspiration and this is such a supportive place. I am so lucky to have come across it. I don't even recall how I found it. I appreciative your positivity.
😍👍im learning about diet. Ate some Mexican food (vegetarian) the other day and it was delicious. Would have never thought of combing all of those veggies. Best...stay in touch. I will, too.
I am a member of a vegetarian website since I've been a veggie for so long. I always suggest to new vegetarians to try eating ethnic foods. Try a new country's cuisine each week when cooking at home, or explore different cuisines in restaurants. Mexican food is very healthy, Indian food, Ethiopian food, Italian cuisine, but you do need to be careful of high sodium content with Japanese or Chinese restaurants due to soy sauce.
Plant based diets are so much more than salad. In fact I didn't eat salad for nearly 20 years but have started having it again. I mostly eat raddichio not the iceberg or romaine as they aren't as high in fiber. Trader Joe's has a bag of mixed raddichio and butter lettuce so I buy that mix.
The staple of my diet is quinoa. You can do anything with quinoa, make with water or broth and add anything on top of it or mix into it. It can be a hot meal or a salad and it is a good protein source and low glycemic carb. If you want to try quinoa I'd suggest getting the mixed kind it has red, white and black quinoa in one package. It has more flavor. Just make sure to rinse it really well under running water or it will be bitter. Otherwise it is similar to rice but with a hint of a nutty flavor. I love it!
Enjoy your new taste sensations. It's amazing what we miss out on by using veggies as only a side dish.
Agreed on how good veg can be. I wasn't so much anti-veg as unadventurous-veg.
Once deciding to go very low protein diet meat had to go. I had a week of mourning and that was about it.
I've found some decent recipes which lend themselves to bulk production and freezing so that takes care of the drudge aspect. And they are tasty once you acclimatise.
What surprises me is that it costs more to eat veggie than my old (rather limited meat n' 2 veg diet). Just goes to show how mass production the meat industry is..
I'm glad to hear you're adapting well to veggie life! I looked at the price of meat about a year ago and was shocked at the price of just hamburger meat. I spend less than $30 per week on my food. I eat mostly quinoa, a salad of raddichio and butter lettuce with dressing, and protein powder for a protein source. I also eat almond butter straight from the jar, another good protein source. I subscribe to several vegetarian email newsletters which have good recipes. I'm sure a lot of cows, pigs, chickens, and ducks are pleased to have one less meat eater on the planet : )
I am so glad your posted..and venting is absolutely ok and appropriate. I hope today is better for you and that perhaps you can achieve some stability in your condition and enjoy that, it is certainly possible. Sending ❤ and healing to you
Hi,At what age were you diagnosed with Scleroderma. My mom passed away in 1987 from complications from scleroderma at age 55. In the 80s there was not much awareness about scleroderma. I have been diagnosed with ckd 3a a few yrs ago at 52. Im having a hard time breathing and i know my heart is fine. Im afraid to ask for them to test for scleroderma, but i think this could be the reason I have ckd.
Hi Dogglover, Sorry to hear about your mom. Most autoimmune diseases like Sclerodema start in mid to late 20's which was the case for me. I was initially misdiagnosed with Lupus. You're right there didn't used to be much awareness about Sclero since less than 2% of the population have it. Another reason there isn't a cure or many meds to help.
Please don't be afraid to be tested. Breathing can be from pulmonary hypertension which is totally different from high BP but quite common in Sclero. Your mom probably had that so you know. Be aware that less that 30% of people with Sclero actually test positive when they run the titers. A good Rheumatologist will be able to diagnose you symptomatically.
Autoimmune diseases do run in families. My mother had Rheumatoid Arthritis which effects the heart as well as joints. She never did have kidney issues. There's no family Hx of CKD. Please go get tested, the sooner you know the better off you will be. If Sclero is the cause of your CKD it will be treated differently than if you have some other cause.
At any rate I really hope you will get your breathing issue looked at. A pulmonology referral may be another place to start in addition to a Sclero Titre test. No matter what the cause of the lung issue you'll need to see a pulmonologist, I've been seeing one since my Sclero diagnosis. I also see a cardiologist and get an echo cardiogram every few years as the heart can cause breathing problems. I know you say your heart is fine so perhaps you've had an echo.
I hope you'll get tested. I'm surprised no one tested you since there is a Hx in your family and your mom passed away so young. It's a shame your Dr. neglected to follow through with that. Don't be scared, it's like smokers who avoid having chest x-rays because they may have lung cancer. Hiding your head in the sand won't help, getting diagnosed and taking action sooner rather than later is key.
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