Membranous Glomerulonephritis

It has been a busy two days, but good ones. Yesterday we went to the Denver myeloma specialist. We already knew the two worst cancer-related causes of the kidney disease had been ruled out by the biopsy. Yesterday we learned the name of Doug's kidney disease: membranous glomerulonephritis. It can be identified only on biopsy. Call it MGN for short. Neither the cancer doc or the kidney doc think it is caused by the myeloma. So the full name is "idiopathic membranous glomerulonephritis."  Idiopathic just means unknown cause. The glomeruli are the filters of the kidney.

The myeloma specialist has a good sense of humor. He said "If a dog has fleas, it can still get ticks." So having cancer doesn't mean you can't still get an entirely unrelated disease. I love a doc who laughs.  He said MGN isn't in his expertise, so he will let the nephrologist take care of that.

The good news from the myeloma specialist is the cancer is still under control. Doug will remain on the maintenance regime of 5 mg Revlimid every other day, and he will resume Zometa at a lower dose and frequency: 2 mg every six months. The Zometa is good because it reduces the chance of fractures, and bad because it can harm the kidneys, so it is a balancing act. Another bit of good news is the creatinine level is 1.2.
Doug will get a blood draw for a MM panel every two months, and see the specialist every two months.

Today we went to see the nephrologist. She spent a big chunk of time with us explaining everything. She said the clinic owners want her to spend less time on patient visits so she can cram more in, but she is ignoring that directive. Good doc!
She said that MGN is not an uncommon kidney disease. 50% of patients go into spontaneous remission. Maybe Doug will be fortunate enough to fall into that category! The other half will eventually need treatment, with 20% progressing to kidney failure if treatment doesn't work. Treatment would be the immunosuppressive drug Prograf and dexamethasone.

The biopsy showed 30% of Doug's kidneys are permanently damaged - "globally sclerotic." Another name for scarring or fibrosis. The remaining 70% is capable of doing the job. Thankfully God made us with extra capacity.

 She feels Doug does not need treatment yet. It is better to wait and monitor him; the drugs have side effects so she doesn't want to use them unless necessary. As long as the creatinine level stays under 2 and the protein level stays under 4 she will just watch. Right now his creatinine is 1.2 and his protein in urine is 3.4, so that is good.

Doug has to take his blood pressure twice a week at home and record it. And watch for ankle swelling. Once a month he will get a pee test and a blood draw for a basic metabolic panel.  She will see him every three months for  now.

He has some dietary restrictions but nothing dramatic. Not more than 4 servings animal protein per day. One serving is the size of a deck of cards. Drink at least 2 quarts fluid a day. Low sodium diet which we try to follow anyway. Carbs are okay.

We are happy with all this. The awful waiting period is over, we know what Doug has and a plan to follow. We have two wonderful caring specialists who take time to share their knowledge. God has blessed us and we are thankful.

Love to all.

Kidney Biopsy Results

We got an email from the myeloma specialist's nurse navigator - we have the results from the kidney biopsy:
"The biopsy doesn't show either of the two things (amyloid or light chain deposition disease) we were looking for. Dr. M asks that Doug follow up with Dr. F (the nephrologist). She will want to review the findings and impart her expertise on what is causing the proteinuria and what needs to be done about it."

I am greatly relieved it is not amyloidosis. We are not dancing in the streets yet, because there is still a kidney problem, but we are very glad the results are in and we can move forward. Praise God.

Next step is the visit with the nephrologist, set for October 23. We hope and pray she will discover the cause of the proteinuria - and that it will be treatable.

The 24 hour urine test showed Doug's protein in the urine was 3191. Normal range is 42 to 225. Not sure what the units are called but that is 14 times normal. His creatinine clearance was 61 ml/min which is low. Normal range is 70 to 130. One good thing is there was no apparent M-spike.

The most common causes of proteinuria are diabetes and hypertension. Doug has neither. Hope Dr. F is a good detective.
To find out more about proteinuria click here.

Love to all.

Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.     Isaiah 41:10

No Results Yet

Still waiting for results from Doug's kidney biopsy. Waiting for the other shoe to fall. I understand the myeloma doc and the nephrologist need to talk to each other, and thus the delay in finding out anything.  So we are trying to be patient. Trying but not succeeding all the time. I'll give it until Tuesday and then will start pestering.
We are trying to keep busy. Doug has been tinkering in his garage workshop, inventing projects. I have been trying new recipes, reading, going for walks. Our hikes together are a thing of the past - Doug is having pain in his left hip - the one that had radiation treatments. He can walk to the corner mailbox but not around the block on most days.

I don't intend to be complaining. We both are counting our blessings and we have so much to be thankful for. I need to write more things in my gratitude journal.

The other day we got a bill from the Denver hospital for $36,000. The date corresponded with Doug's bone marrow biopsy. A phone call to the financial office told us it was an error. For some unknown reason they were not showing our supplemental policy; they corrected their information. The $36,000 was a Medicare co-pay for the bone marrow biopsy. The kidney biopsy cost will be even higher with the radiology guidance. The costs of battling myeloma (or any other cancer) are so high, with procedures and astronomical charges for new chemo drugs. I'm sure glad we have good insurance!

Doug is going with me this afternoon to take a meal to dear friends. Doing something for someone else is good medicine.

Love to all.

"One act of thanksgiving, when things go wrong with us, is worth a thousand thanks when things are agreeable to our inclinations."     St. John of Avila

Kidney Biopsy Done

Yesterday Doug had his kidney biopsy in Denver. The procedure went well but it was a very long day. Three hours drive to PSL, check in at noon as scheduled. We got up to the prep room by 12:30 and IV was started and all the usual questions explanations and paperwork. The nurse asked him when he had his kidney transplant; he has not had a kidney transplant! The question was repeated throughout the day by various medical staff. Turns out that most kidney biopsies are done on transplanted kidneys, to see if the kidney tissue is still healthy.  A kidney that is the patient's own is called a "native" kidney in medical lingo. Doug told them his are "owner-operated".  He always finds a way to get the nurses laughing.

The biopsy was supposed to start at 2:00 in Radiology. The interventional radiologist does the kidney biopsies - usually with ultrasound guidance. They were running late; Mondays are busy anyway, and they had several add-on cases that got sandwiched in. Doug did not get taken down to radiology until 3:45, and then more waiting there. A nurse came in and explained how it would go, apologized for the lateness, then the interventional radiologist came and introduced himself and took a brief history. A few minutes later the nurse came back and took Doug, saying that the doc had decided to use the CT scanner for guidance instead of ultrasound. I never did find out the reason for that.

The biopsy procedure took about 45 minutes. The pathologist was there to look at the samples before the needle was removed from the kidney. This is not to make a diagnosis, but to ensure the tissue samples are good enough to work with.

I was not allowed to watch, dang it. Strict hospital policy. I am retired from radiology and radiation oncology, so I know the rule. I really appreciate being allowed to stay for the bone marrow biopsies, but that is in a different part of the hospital and by the CBCI people. (Colorado Blood Cancer Institute) CBCI understands it is not only the patient but also the caregiver they are dealing with.

Afterward Doug was taken back up to the prep room. We had been told the kidney biopsy patients are monitored for two hours before discharge. This is to make sure there is no bleeding from the biopsy site. Well the nurse read the orders and found the doc ordered a three hour monitoring period.  I suspect the doc had to muck around a little more than usual - but I don't really know. This caused a minor flurry because it was already late; two nurses ended up working overtime. Doug had to lay flat on his back on a folded towel to put pressure on the biopsy site, for two hours. Then he was allowed to get up and walk around a couple of minutes and go pee; the nurse checked and no bleeding at the site or in the urine, yea. Then another hour of lying flat before he was finally discharged. It was 7:30 p.m. by this point.

Doug and I had talked about staying in Denver if it got to be too late. Once we knew everything was delayed, I made a hotel reservation. I knew I was too tired to drive the three hours home in the dark. We were able to get a room in a hotel that gives a hospital discount, and it was in an area I am familiar with - that was a real blessing.  No driving around in the dark trying to find an unfamiliar place.

Doug has a small gauze bandage on the left side of his back. He feels good and says he has only very slight soreness. The sedation was the same versed and fentanyl sedation that is used for the bone marrow biopsies, so he has no memory of the biopsy. We are very thankful the procedure went well.  We were told it takes 48 hours to get the pathology report. I know our myeloma specialist will need to look it over and come to a decision on treatment before we get a call. We are hoping to hear something by Friday but not holding our breath.

The road ahead on our myeloma journey is about to take a turn. Just can't see around the bend.

Kidney Biopsy Scheduled

Wow- things are moving fast now. We got a call from the nurse navigator saying they could do the kidney biopsy tomorrow at 8:00 a.m. We hesitated because there is a storm front expected late tonight. The road from Buena Vista to Denver can get a lot of blowing wind; if it snows the visibility can be awful. So we asked if there was an opening Monday - yes! Doug is scheduled Monday for noon check-in. That is a lot better weather-wise.

We are very glad that it can be done soon. Waiting can be stressful. The sooner the biopsy is done and the results are in, the sooner a treatment plan can be formulated.

Needs Kidney Biopsy

After waiting over a week, we got a phone call from the myeloma specialist himself this evening. He said the 24 hour urine test showed that Doug's kidneys are leaking over 3 grams of protein a day. The test showed it is NOT light chain deposition disease. The other possibility is amyloidosis, or there is also a possibility the cause is completely unrelated to the myeloma. So a kidney biopsy is necessary. The nurse navigator will call us to schedule. We hope it can be done as soon as possible, so some kind of treatment can be started.

This does not come as a shock; we have been preparing ourselves. Doug is calm, as am I.

"I know the Lord is always with me. I will not be shaken, for He is right beside me." Psalm 16:8

Blessings to all.