Finally a diagnosis: I finally got the... - Kidney Disease

Kidney Disease

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Finally a diagnosis

Smokey2014 profile image
14 Replies

I finally got the results from the kidney biopsy. It showed I have Membranous Nephropathy..

Unfortunately I also have something that only 5%of these patients get..

I also have Segmental Crescentic Glomerulopathy..

The pathologist sent a smear from the kidney biopsy out today to test for Wegener's Granulomatosis..

They're pretty sure I also have that..

I was started 2 days ago on 1000mg of prednisone I.V for 3 days..

Tomorrow after the last prednisone drip I can go home..

I start aggressive treatment for the diseases tomorrow..

My nephrologist said he will try and get me in remission..

If the Wegener's Granulomatosis is positive he needs to also start more aggressive treatment to treat that also..

If anyone had these diseases please let me know..

I'm out of mind with fear...

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Smokey2014
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14 Replies
Bet117 profile image
Bet117NKF Ambassador

Hi Smokey!

It's perfectly normal to feel as you do, as the words kidney disease is overwhelming when it first is heard.

It sounds to me like you have a wonderful and competent nephrologist, who will work closely with you to get this under control. Ask to have labs explained, keep a notebook

with you at doctors appointments and write down what is said. Bring a member of your family or good friend with you to scribe at the appointment.

Don't be afraid to ask questions.

Remember that it is a process, often trial and error of medication and takes time to put it all together.

I know- I was diagnosed with Membraneous Nephropathy in April of 2017, so I understand your feelings, concerns and fears.

I have been treated with Lisinopril and in February of 2018 given Tacrolimus 3mg. I was on it until June. I am not a candidate for prednisone, but my present nephrologist feels that Rituximab would be a better choice of treatment for me, still to be determined when as we had to get the Tacrolimus out of my system.

I deal one day at a time, and am grateful that this was caught and although can't be cured, can be controlled.

I eat a diet with lots of fresh and fresh frozen veggies, apples, strawberries and blueberries. I don't have an issue with potassium or phosphorus, but still keep an eye on dairy, potatoes and other foods which are high in these areas. I drink plenty of water, especially in the hot weather, do not eat red meats or high sodium products and walk daily. These are all important.

I would ask your doctor for a referral to a renal dietician who will be able to give you more definitive quantities and food selections. Sounds like alot but it will help set you on a great course of action.

I know that it is difficult, but try to stress less and breathe as they know what it is, are treating it. You can only control so much.

Just know that you are not alone. Reach out and I will always respond.

Sending you my prayers, hugs and healing thoughts..

Always here..

Bet

catbode1956 profile image
catbode1956

My husband has membranous too. He was diagnosed in 2013. We have had our ups and downs but he is doing ok. He was diagnosed in Stage 4. His doctor has tried various treatments and all have helped. We just hang in there and keep praying.

Smokey2014 profile image
Smokey2014 in reply tocatbode1956

I am also in stage 4..

That is the scary part..

I was started this month on 30mg of prednisone for 35 days then next month an antigen for a month, the following month prednisone then the antigen a month later..

6 months of this treatment first.

He will see if there is any improvements in my urine and bloodwork and then after the results go from there for more treatment..

He said the target is to get me in remission..

My fear is how my quality of life will be..

Bet117 profile image
Bet117NKF Ambassador in reply toSmokey2014

Continue to advocate for yourself. Let time and the medicine heal you.

There is quality of life! If your doctor is shooting for remission, that's a great sign.

Remember that it is a set of steps, and progression. Thank God you were able to get the correct medical care that you needed. Step 1.

Stay strong and positive as possible.

Know that you are cared about and many are pulling for you! ❤

catbode1956 profile image
catbode1956 in reply toSmokey2014

My husband still does all the things he did prior to being diagnosed. We do move at a slower pace but part of that is due to my health. He has had to take prednisone several times and it makes him sluggish but he continues on. Hubby has had chemo too, which is a huge help.

Remaining positive and reaching out to others is a great help too. This is all scary at first. If you have a significant other, have them go with you to the doctor. They are just as scared. Our doctor lets me ask questions and answers them. I have taken notes and asked for lab results. If you are in a large city, see if NFK has a local office and find a support group. Attendan6 kidney related events you can to find others. It all with help.

Kalyn profile image
Kalyn

I was diagnosed with Wegeners in 2015. My kidneys had completely failed at that point, but I was treated with prednisone and rituxumab. Mine has been in remission since.

Smokey2014 profile image
Smokey2014 in reply toKalyn

My nephrologist is waiting for the results for Wegener's disease...

He said if that test is positive we also need a plan of treatment for that too.

LAR7 profile image
LAR7

Hi Smokey!

I have membranous Nephropathy also I To was scared in the beginning I feared the unknown of this kidney disease. I was diagnosed in May 2013 in Stage 4.

My Nephrologist started me on a regiment of Lisinopril, Valtassa to control my potassium and Rituximab which is a chemo treatment medicine given in IV form. These medicine help to slow the progression of the disease. With this treatment my GFR is 50 and Creatinine is 1.4 at my last lab work. When I was first diagnosed my GFR was 23 and Creatinine 2.7.

Good Luck!! My thoughts and prayers for you. Let me know if you have any other questions.

Smokey2014 profile image
Smokey2014 in reply toLAR7

Thank you so much. As of now my GFR went up from 22 to 29..

He said his goal with me is to get me in remission and then try and get the GFR up to a higher level..

Right now I just finished 3 days of 1000mg of prednisone I.V..

He sent me home from the hospital and put me on 30mg of prednisone for a month and he will switch my medication to an antigen for a month then back to prednisone for a month..

He said for 6 months I will be alternating 2 drugs and then determine if that therapy is working.

Smokey2014 profile image
Smokey2014 in reply toLAR7

My nephrologist started me in August on 1000 mg of Prednisone I.V in the hospital and put me on 30mg Prednisone by mouth at home for 35 days..for September he started me on chemotherapy pill form at home for 35 days.

In October 3 days of I.V Prednisone , 1000mg a day for a total of 3000mg at the hospital as an outpatient...Then another round of Prednisone 30mg a day by mouth for another 35 days then back to chemotherapy by mouth for the month of November..

He's going to alternate the Prednisone and chemotherapy for 6 months and do monthly bloodwork to see if I go into remission..

Also monthly urine tests..

Hopefully this treatment will work..

catbode1956 profile image
catbode1956

Wondering how you are doing today? Hubby and I are trying to think of other things that might help. NKF has a peer program where you can talk with another Kidney Patient on a regular schedule. Thought that might help.

Smokey2014 profile image
Smokey2014 in reply tocatbode1956

Thank you so much!

I really would appreciate it.

I'm having such a hard time coping with this diagnosis..

I'm afraid because I'm stage 4 that I'm going to die..

I had 1000mg prednisone I.V for 3 days in the hospital...

I'm home and on 30mg prednisone by mouth for 35 days and then they will start the antigen for 1 month..

Right now I am in so much hip pain and leg pain I can hardly stand up.

I can't even have pajama bottoms rub on that hip because of severe burning and pain..

I'm coughing up blood which my nephrologist said is normal with this kidney disease..

I'm trying to stay out of bed so I can at least get some housework done because laying in bed only depresses me more..

Does everybody with this feel so depressed and physically sick and mentally drained?

catbode1956 profile image
catbode1956

Depression does not surprise me as hubby went through that. He still has times. Sick and drained, yes. The med is part of the culprit for that. Prednisone has diffferent effects on people but he felt tired and weak. Do you like to read? Find something that you like and do goofy things. Funny movies or books. Coloring makes me calmer. Music can help. Talking with others is always good. Don’t be afraid to cry and scream. That never hurts.

What state do you live in?

Smokey2014 profile image
Smokey2014

Pennsylvania..

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