“Circling the drain.” These were the exact words from the doctor and we all know what this means… but this time it wasn’t about Mark and it wasn’t about cancer. This was my doctor and he was describing the state of my health- don’t worry, it was March of 2022 and my recovery is almost complete… so I have escaped the “drain” and am so very close to normal. I am going to share a long story in as few words as I can mange and will explain my purposes at the end.

My diagnosis is somewhat rare – Nephrotic Syndrome with 3 out of 100,000 adults diagnosed in the U.S. each year. The underlying cause is a disease called Membranous Nephropathy (8 to 12 cases per million diagnosed each year). I thought that the best description came from my primary care physician – he said that if my kidneys were a sieve and protein was like spaghetti… well, the holes are too big and the spaghetti is falling out. The filter designed to keep protein in my body was failing and I was quite depleted. If treated this is not life-threatening, but I had let this go for almost a year and well, I had let it go too far.

For perspective – the primary lab value that we watch should be between 0-150. We celebrated in August when it was under 1,000. Earlier had been happy to have it under 10,000! Here is a screenshot of a few of my labs in March and April of 2022 with the “normal” values scribbled to the side in red:

So crazy! So when something that should be ZERO is over 24,000 it doesn’t bode well for quality of life. I figured that if protein is a major building block of our cells… my cells were really struggling. Here are a few of my least favorite symptoms… My hair broke off or fell out constantly. My thumbnails separated from my skin, always looking dirty. I knew exactly where my major blood vessels were in my legs because they felt like solid iron rods when I walked. I had no brain – really… I could scarcely think or process information. I will use the word exhaustion but this wasn’t about sleep, it was about being thoroughly and completely depleted. I sat in a chair for months and didn’t do anything. I didn’t go to the basement, didn’t do dishes, didn’t cook, didn’t drive… I had two activities each week – I never missed my volunteer service on Saturdays and I went to church on Sunday. The rest of the week was mostly resting from the exertion or resting to gear up to go again. No one really knew – it was hard to describe what was happening. We were new in our community and I worried that people would just think I was quite a Dud… and I was, but there was nothing I could do about it.

Then there was the swelling! It was awful! My legs were like telephone poles, my face was almost always swollen which is quite unattractive as well as uncomfortable. My hands and wrists hurt. My lungs were a mess – I had trouble getting a deep breath. This was worse at night and I would wake up in the early morning gasping for air or being woken up by the strange sounds that I made as I tried to breathe. Often this was a gurgling sound but sometimes it was like a donkey braying and I would startle awake trying to figure out the cause of this terrible noise before realizing it was ME!! What in the world? I couldn’t speak well in the mornings because my tongue would be swollen. Initially my blood pressure was at stroke levels and my cholesterol was through the roof.

After a few months I was able to drive as far as the grocery store, though if I needed to do real shopping I would need to have someone with me. I almost always needed someone with me. One thing that saved me was my stubborn insistence on walking with Mark each morning. I was so weak. Sometimes I would make it as far as the driveway and turn around, sometimes to the corner. Eventually we resumed walking a few miles, but then those iron-rod-blood-vessels in my legs were so painful! When I was diagnosed there was a such a scurry to get me right into the first ultrasound appointment available in the valley to look for blood clots in my legs – there were none and I attribute this to daily walking.

Later I was able to keep appointments(I went seven months without a haircut) or even go out to dinner with another couple – but this would mean laying very still for hours before and then coming home and crashing. Yet it was so exciting to be out and about – I loved it. I loved when old friends would drop by and be patient with me as I lay on the couch and mumbled in and out of the conversation. How I loved them for coming!

How did I let it go so far and get so bad that I was “circling the drain?” Swelling began in April 2021 and when I mentioned this to the doctors they attributed it to a recent trip to Florida. I was frustrated because I had never swollen at all; well, maybe a day or two in August during one of my pregnancies. At that time my blood pressure and cholesterol were slightly elevated, but the symptoms just were not extreme enough to get their attention. They told me it was probably stress and sent me on my way. I was pretty unimpressed with the diagnosis and refused to go back, even when everything began to get worse. In December I had pneumonia (I was definitely immunocompromised also) and the X-ray showed a round pocket of fluid. That black circle on my films was the only reason I returned for a follow-up though for various reasons it took several months to get me back. It wasn’t just stubbornness on my part, by this time I was moving in slow motion and not thinking too clearly.

Initially we had to address the symptoms – the swelling, the blood pressure, the cholesterol. I began to eat at much protein as I could get my hands on. I ate soooo many eggs and I craved ham and cheese sandwiches with extra ham, extra cheese. Fish was my new best friend. I ate and gained weight and it didn’t matter at all because I learned the value of clear thinking and having bursts of energy. Treatment involved four infusions of Rituximab. Two in the summer, two in the fall. It was actually five but I had a bad reaction the first time and and they had to discontinue that infusion. Recovery can take several years and it would appear that I am on that path, but I am recovering and life feels great! I still panic if I leave the house without a Fairlife protein drink in my bag, but I CAN leave the house and I do not take this for granted!

I could say so much more about these past years of dealing with Membranous Nephropathy… but why I am saying anything at all? I have a couple reasons that I wanted to include this in my blog.

I say over and over that everyone has trials and they often do not show. Cancer is public. I often thought that if I had cancer instead, that everything would be so different. Only those who knew me well were aware that anything was different and even then it didn’t really make sense to them. For the most part, if I was out and about, I was rested and feeling well and able to interact normally. We often leave functions early when I feel symptoms coming on – I can go home, eat protein and lay still for an hour or two and then be back to normal.

So who else do you know that is suffering and but you are completely unaware?? I think it is fair to say that every person we come in contact with has something going on and they can use at least a smile or a kind word. Can you ever go wrong with a smile?

What if you know another ten-in-a-million Membranous Nephropathy patient who ignores their symptoms for a year? Go and sit with them because slow recovery can seem very slow…….

Mostly I want to say that we have seen miracles as my condition relates to Mark’s cancer! Last October when Mark had renal cancer one of our concerns was whether or not I would be able to drive him to surgery in Salt Lake City and then drive him home again the next day. I pulled it off but we knew that a month earlier we would have been looking for other options. Remember that fun cruise we enjoyed in May? Up until the last minute we were not sure I could go, but miraculously just three days before we left my symptoms took a dramatic turn for the better. During our weeks of radiation we marveled that I was able to drive him the ten minutes to and from treatments each day. I could not have done this the year before and this year I could not have done this the 90 minutes from home so… again and again and again… thank you to Hope Lodge. The timing of our blessings have not been accidental.

My kidney problems prepared us in other ways. During those early months we had to consider the reality that I had been facing death and since I was scarcely living, it continued to seem a very real possibility. We learned to talk frankly about death and our future, something we are doing again today. We don’t like it, but we can do it. We are grateful for these discussions. We learned to take life at a slower pace. Learn to prioritize and let some things go undone. Relationships are everything and they must also be prioritized. At time you will gain weight when you need ham and cheese and at times you will lose weight when cancer steals your appetite. At least one of us is learning to accept help when it is offered. We have learned patience for someone who just needs time to rest. When it is hard to sit we sometimes eat dinner on the couch. We have also learned that it is alright to sometimes miss out on the fun when you are depleted or when you have a painful tumor and your caregiver needs a little time away.

Wow – so much to learn. So many blessings! The list goes on and on. You just never know what life has in store, but try to greet it with a smile and a kind word! And an occasional protein-packed filet mignon.