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MGN as a rare kidney disease
Has anyone out there in this forum ever been diagnosed with what is called MGN . . . Membranous Glomerular Nephropathy?
My husband was diagnosed with it in 2008 after a kidney biopsy I had to beg for and another in 2021, confirming the diagnosis after suffering cancer in 2018. Since then he has had three episodes of pulmonary embolii, Hepatitis C and, most recently, that cancer in 2018 that I mentioned which revealed he had a baseball-sized tumor in his small intestine. It was diagnosed as Stage 4, Non-Hodgkin's Large B-Cell Lymphoma. He was treated with 6 rounds of R-CHOP chemotherapy and, thankfully, he has been in remission for the past 7 years. However, they have noted several of his vital organs have what they have described as non-cancerous (so far) "cysts on them, and are watching (in particular), an IPMN on his pancreas (1.5 x 1.7 cm) for signs of growth. He has been going in for regular MRCP scans to monitor his abdominal region and was just told last week again, thankfully, that things look "stable". But, obviously, it's like living with a hammer over our heads.
I realize none of us ever knows what that next turn around the curve lying ahead may bring; but, after this long and after so many serious illnesses and health concerns we've faced . . . I'm wondering what other folks may have experienced and what issues they may have encountered after they were diagnosed with MGN.
We've decided to forego healthcare here at the local level for his kidney disease (long story there, sorry) and now see a nephrologist at the Rochester Mayo Clinic for monitoring. More horror stories there, saved for another time if anyone is interested but I've posted several stories on the Caregiver's Group discussions if anyone is interested in our story.
Apparently, this particular kidney disease can be associated with different cancers which is why we feel more at ease traveling to the Mayo Clinic when necessary because care here at the local level has proven problematic. He's almost 70 now but, as mentioned, has been dealing with this disease for some time, first evidenced by large amounts of protein in his urinalysis screening tests. He will always have this disease, we've been told, and will always be anemic from it and will continue to leak large amounts of protein. We've been told, also, that he will continue to show different blood and urine test abnormalities, along with that threat of possible malignancies posing an additional concern that we need to be on the lookout for.
I guess my question is how many other cases may be out there with similar experiences (if anyone on this discussion forum has had the same diagnosis) Most of the time (especially after the one Rituximab infusion he had in 2021), the kidney disease doesn't seem to be causing him any real problems. In fact, he seems otherwise healthy and can do pretty much anything he tries to do . . . thankfully. But, as I mentioned, we have that heavy, more specific, hammer hanging over our heads, with more of the serious problems it has caused us in the past possibly, falling once again at any moment.
I know. I know. Let's just be grateful that things are holding their own right now; but, I was just wondering if anyone else has faced the same type of threats this dang disease is associated with.
Thanks for listening!
Dawn
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Dawn: I have membranous glomerulopathy. I was diagnosed in 2017, and the consensus is that it was triggered by prescription medication that I was taking for my osteoarthritis. The medication was an NSAID, so I cannot take any NSAIDs ever again. And, as a result of not taking those meds, I have not had a flare of MG in years.
I found out I had GM following a CT for another reason. The CT showed multiple pulmonary emboli, and a large clot in my vena cava. The nephro called me from the hospital right after the radiologist paged her about my CT, and she sent an ambulance. I spent several days in ICU as a result. I was very lucky. The big clot didn't move, and the PEs eventually resolved. I have been under the care of a nephrologist ever since that first episode, and he watches my creatinine and BUN very closely. Right now I have rising values, and am in the middle of a lot of tests. So far, no indication of GM, but it worries me. That's really all I can say. I rarely meet anyone who has had this disease, or even heard about this disease, so I would appreciate any information you can send my way, and I will do the same for you.
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3 ReactionsOh, boy!!!!
This IS very rare, isn't it? I didn't expect anyone to respond, so I am extremely grateful for your sharing your story with me.
I will try an share more of my husband's perplexing, prolonged and complicated story with you either a little later today or tomorrow.
Full disclosure . . . I am really, really verbose.
Take care my friend! 😌
@biowicks
Welllll, I tried. But I guess the powers that be didn't like or wasn't able to accommodate my lengthy, verbose response because I just got the circle of unending doom after I tried to send it through.
There's just so much to this nightmare of a story and the journey we've traveled (and, apparently, are supposed to continue for a while yet) . . .
Specifically . . . though . . . were you needing / wanting to know about certain blood/urinalysis results?
I'll try and post something tomorrow, perhaps a shorter version of what I tried to send; but, it's just so complicated and so stupid. I'm amazed we're still married and can talk in complete sentences after all of it.
Til tomorrow . . . but if you need more info on blood tests, etc., just let me know and I could look them up for you.
Best wishes,
Dawn
@biowicks
I found the "private" message option . . . . DUH, I should have seen it before; so, if you'd feel more comfortable sending me a private message, feel free. I have yet, though, to find a way to "send" one. Maybe I just haven't been a member long enough yet or something.
Anyhow . . . feel free to send me one if you have the option. I'm all ears.
@biowicks
Apparently, I can't send private messages yet. Understandable protocols. I get why they're careful. So, since our situation is a bit unique, I tried to explain it to you yesterday in a really long, wordy response. "They" wouldn't let it through.
I hope to be able to send you more info soon through a private message but I guess I'll have to wait. How long that takes, I'm not sure.
Plus, I don't seem to be able to edit my past comments like I could before. I think that's odd too. I detest it when I discover my typos, as well. Hopefully, things will resolve soon.
In the meantime, just let me know what info, specifically, you would like me to send.
Take care, hun!
I'm interested in your symptoms prior to diagnosis. I'm also interested in any gehetic connection you might have noticed, and whether or not your doc has you on any 'preventarives'. As to lab work and such, I'm i biologist, so I have and understand that.
I could do that, hun. Watch for something soon with that info.
Dawn
Okay . . . so here is what I think may answer some of your questions . . . It may not seem like it but I am really trying to condense my responses down to an acceptable length but that is so hard for me sometimes; especially, when our story is so complex.
My husband, had his first kidney biopsy in January of 2008. He went in for a yearly physical in 2006, that revealed proteinuria of what I remember as being around 1+ protein loss (maybe a little less) . Sorry, those actual results are unavailable. His sister died of renal cell carcinoma at an early age (only 49); so, when that proteinuria surfaced, that was our (my) cue to start researching things.
For that next year, he started feeling fatigued, really crabby, and started developing ascites and early stages of congestive heart failure. Was coughing all the time too. His primary doctor, probably in early 2007, diagnosed him with "pseudo" pneumonia and that CHF. All the while his proteinuria increased to somewhere between a 2+ and 3+ level.
His first kidney biopsy (which I had to beg and beg for months to be done), revealed the MGN. The biopsy was extremely difficult for the nephrologist to do because of the membranous condition he had but we had to fight for treatment of the kidney disease since he vowed he would never consider dialysis. He was put on oral chemotherapy drugs (Cytoxan and Prednisone) for 6 months, which improved/resolved the proteinuria. His other symptoms also improved greatly.
After the procedure, a short time afterward, he developed his first PE. All during 2007, 2008 and 2009, his liver enzymes kept coming back more elevated than the previous time.
He was put on Warfarin after that first PE, in 2008 but his liver test abnormalities just kept getting worse. All the while, after that first PE, I was told to continue the LOVENOX stomach injections they had been giving him at the hospital until his INR tests leveled and the Warfarin could take care of thinning his blood.
In 2009, he developed a rectus sheath hematoma at the hospital after a liver biopsy was finally performed, just about a week and a half before our youngest daughter's wedding, which landed him in the ICU. Thankfully, the liver biopsy did not show signs of cirrhosis, but his vital organs were shutting down from the hematoma and he became extremely jaundiced. Every inch of him was "yellow". The wedding photographer had to filter the photographs so that it would like he had a dark tan. While in the ICU, the specialist they finally sent into his room did a PCR test, instead of the screening test they had run before. That PCR test revealed that he had an acute case of Hep C, which required stomach injections of Interferon for at least 6 months. They, at that time, also noted another PE and placed an IVC filter in his vena cava which they told us was "permanent", but that, they said, would eliminate the need for the Warfarin, once his INR tests leveled.
That un / "mis" diagnosed case of Hep C for so long, I believe, is what had caused the kidney disease.
So, for most of 2009, up until they diagnosed him with Stage 4, Non-Hodgkin's Large B Cell Lymphoma that necessitated a baseball-sized tumor be removed from his small intestine in 2018, he was doing pretty good. The proteinuria persisted, as his kidneys were permanently damaged (as is still the case today). He will always be anemic and that protein loss is now being monitored by a nephrologist at MAYO. The care here, obviously, had just missed one too many things and there have been a series of missteps by the medical profession where we live.
He endured 6 rounds of R-CHOP chemotherapy in 2018, but after another (3rd) PE was missed by his oncologist here in 2021, we simply decided enough was enough. A CT scan was done here, after my begging them to do something to see if things were finally resolved but that oncologist "missed" the third PE, and his proteinuria increased to over a 3+ again; so, rather continue care here anymore, we now consult the advice from that nephrologist at MAYO.
He takes 100 mg of Losartan each day (one 50 mg tab in the a.m., and another 50 mg at night). He also takes 10 mg of Eliquis per day (5 mg in the a.m., and another 5 mg in the evening). The IVC filter is still there since we decided it too much of a risk to try and remove it after all this time.
The nephrologist at MAYO runs a CMP, a CBC with differential, a PLA2R cascade test and an IgG immunoglobulin test, as well as a 24-hour collection for him whenever we consult with her. His yearly scans were recommended by MAYO after that IPMN was noted on his pancreas, in tandem with his nephrologist's recommendations, as she has cautioned us to be vigilant for other changes that could indicate another cancer developing, as MGN can sometimes be known to exist in conjunction with the kidney disease. Being proactive, we agree, is vital to his continued relative good health.
Several of his PLA2R antibody tests for the MGN have come back as low or borderline . . . which, to me, suggests there was that un/misdiagnosed Hep C years ago. Of that, no one can ever be certain . . . sort of like the "chicken" and the "egg" question.
Sooooo, for now, we hope things remain stable, as we've been told. Our plan is to have the yearly scans done here, if they will cooperate with us and see his nephrologist each May. We have a televisit with her next week and hope she will be okay with that plan. Did I mention that he will always be anemic and only continue to leak protein in his urinalyis? It hovers around the 750 to 800 range. He had one Rituximab infusion in 2021 after a second kidney biopsy was performed to confirm the PLA2R / MGN diagnosis here and we're hoping that's all he will require, as he had that immunosuppressant as part of his chemotherapy in 2018 that caused an allergic reaction but was controlled when the speed of the drip was decreased. He also had that same reaction in 2021 when the nephrologist he was seeing here prescribed it . . . disappointingly, even after we cautioned him about it. Yet another reason we now travel to the Rochester Mayo Clinic when we need to.
I hope this all helps . . . just let me know if you'd like to anything else. Sorry for all the blah, blah, blah but it IS an extremely unique situation.
Best wishes,
Dawn
@biowicks
Sorry to be bothering you again but I just remembered my husband also takes 2,000 IU's of Vitamin D every day and that cancer runs in his family . . . not sure about anything his maternal grandfather had but it was some form of cancer His mother and twin sister also had breast cancer. His twin is still living but his mother died in her 50's, not from the cancer when she was in her 40's, but from Alzheimer's when she was in her mid 50's.
I'm a realllly chatty Kathy so, I also wanted to tell you that I've posted about our our saga in the Caregiver's discussion group if you're interested.
Just let me know if I can help you out with anything else. Your story is, also, a long and complicated journey . . . so, I can relate to what you're going through, my friend!