Finally got the Diagnosis!

[tas1kubra]

Hello everyone.

I am around here for 2 months now. I must say, it has been a horrible 2 months. Lots of nightmares, unnecessary operations... But today here I am again, writing to you from Copenhagen. I actually moved despite every negative development regarding my disease.

I would like to start with my diagnosis. I have FSGS, it is not certain if it's primary or secondary. But I don't have any other problems, such as BP or diabetes, so doctors think that it is primary. They want to start immune suppressive medications, but my diagnosis came just one day before my flight to Copenhagen. So I have not started my medications yet, but I am planning to start in 1-2 weeks.

I am really in between feeling relieved and scared again. My doctor told me that this is the most aggressive version of kidney disease. He is expecting kidney transplantation in 5 years. You know... I sincerely don't mind the transplantation procedure. But I really (!) hate the attitude. Even though I may develop a problem and need the kidney sooner than I think, I hate the attitude of my doctor. He is a very calm person, but he is like always delivering bad news to me, and he treats me like I am at the last stage.

I hate it. Not being at the last stage, but receiving negativity. I already have lot of negativity I have to handle, I don't need an additional one from my doctor!

That is why I am looking for doctor options here in Copenhagen. If I can't find a doctor here, or the treatment I am expecting, I am considering going back to my country but finding a different doctor who can give me strength.

Also, he told me that if I try to get pregnant right now (my eGFR is around 38), I might need dialysis, since the pregnancy would progress my disease. He advised me to get pregnant after transplantation. He actually believes that I might get transplantation in the close future, so I can try to get pregnant afterward. I am okay with this option, but I only consider if we try to hold on to my kidneys for long then I might get the transplant in my 40s. Then it would be very late to have a child. Well, when I told him this question in my head to my doctor, he told me that he does not think it's gonna be that long before the transplant. Way to be hopeful ha

[orangecity41 NKF Ambassador]

Heres is a link to FSGS article by National Kidney Foundation. I hope this is helpful in understanding your disease. kidney.org/atoz/content/focal

[Mgt8]

Hi,

When you are going through something like this you need all the best advice. I can certainly appreciate your desire to find a doctor who has a more positive approach and better information for you.

Also, why not ask your doctor to be referred to a genetic counsellor regarding your desired pregnancy. You may find better information with their specific expertise.

Wishing you the best...

Mgt

[tas1kubra in reply to Mgt8]

Hello

I am trying to schedule doctor appointments in Denmark, but I really don't know if I can get a genetic counselor or not. But thank you for the recommendation, I will definitely ask about this.

[Lianelady]

tas1kubra, try to find a doctor that will treat you instead of giving you the end result options. You need a doctor that will try and slow and stabilize your disease . A doctor that will actually walk you thru your disease while giving you information and medical advice along the way to slow your progression of fsgs. You should try immune suppressants, like Prednisone. You should try an ace inhibitor med. The ace inhibitor med will relax your veins and lower your blood pressure, which will lessen the amount of protein spilling from your kidneys into your urine. This might slow the progression of the disease. I have a very similar disease. I have Fibrillary Glomeronephritis. The first doctor that diagnosed me sounds very similar to your doctor.. He said to me on the day of diagnosis. "you will have a poor outcome" "transplant will be in 2 years" . I have since found a Nephrologist that has helped me. I am stable right now at stage 3b. I am considered in partial remission. This is 5 years since my diagnosis. I take immune suppressents daily. I take losartan to lower blood pressure and i do 4 rounds of rituxan infusions every year and half.

The only other advice i can give you try not to stress.. I can attest to the fact that stress makes your disease worse.. Believe that you and a good doctor can treat and slow your disease. If you trust your doctor to do the right things to help you . This makes a great difference in how you handle having a rare disease.

[WYOAnne NKF Ambassador]

So sorry about your diagnosis. I too had a diagnosis of FSGS, but mine was years ago. I also do not have high BP nor diabetes. They told me I had FSGS in 1992 and was on the transplant list in 1998. I was given my "Gift of Life" in 1999. My donor was a deceased 16 year old that was involved in a car accident. This Fall will be my 23rd transplant anniversary. I have a great life with traveling throughout US, Europe, Caribbean, Mexico, etc.Back in the 90's they didn't do much to try to stabilize your CKD. Now there have been many on this site that have been able to do just that with diet - low meat, low sodium, low potassium, etc. The NKF kidney.org does have diet suggestions. Many also see a renal dietician.

I hope you find a doctor that has a positive approach and one that you can trust.

Please know that we are all different and what works for one may not work for you.

Let us know if you have any questions. Best of luck to you!

[TopazForests]

Hi! I would definately suggest finding a new doctor who looks at what can be done to slow the progression of your disease instead of focusing on potential bad news in the future. As for pregnancy, I don't know how kidney disease impacts pregnancy or the baby, but I can tell you that early 40's is not too late to have a baby. My 2nd child was born when I was 40, it was a fairly easy pregnancy. Talk to your ob/gyn before you get pregnant to see what you may expect.

[tas1kubra in reply to TopazForests]

Thank you for your kind words TopazForests. Honestly no matter how much we try to plan whats ahead of us, there's nothing to do at the end. So we are opened to adaption as well, but I want to try having a kid on my own if its possible, and adapt a kid as a second child. But god knows whats waiting us. .