Category Archives: Kidney Disease

Five Stages of Grief

I kind of knew about this whole five stages of grief theory because years ago there was a cartoon giraffe that people sent around in email (this was before the days of ‘sharing’ on Facebook) but I had no idea it was real. However, I’ve been through them all and can tell you they are very very real… I wish I’d had the foresight to save that little cartoon so I could insert it here but alas I didn’t. Here’s how the stages have played out for me now that I have the benefit of hindsight.

Denial – this happened many times. I denied there was even anything wrong before I finally went to see the doctor with both lungs halfway blocked with blood clots. Happened again when my legs started swelling up and I didn’t mention it until it was impeding my ability to do yoga. In the overall scheme of things, I think I excel at this one the very most! How about when I was so sick I ended up in the ER for five hours but was still planning on going to spend twelve hours at a dance competition. “I’M FINE!”

Anger – This one was kind of overshadowed but I know I was mad for several weeks in my initial treatment when I had to give up all my favorite foods because of my blood thinners. I think I could have gotten my dose regulated far sooner had I not insisted on still eating broccoli at least a couple of times a week. I was also briefly but epically here right after my final diagnosis when I declared to the Universe that this shit wasn’t going to stop me…

Bargaining – I bargained with my doctor when he wanted to put me back on Coumadin when we realized I hadn’t stayed on it long enough initially for my clots to be dissolved. He was nice enough to humor me with my bargaining antics. Probably because I’m super duper good at it!

Depression – this one was the most marked for me since I’ve never suffered with depression. When it became clear there were more things going on with me than a silly little blood clot that would eventually go away I got really depressed. It didn’t help that I had ballooned up an extra thirty pounds of water weight in three weeks so on top of dealing with a long-term illness I was super bloated with nothing that fit. Literally. Anyone would be depressed at that point!

Acceptance – I’ve gained this level in the last couple of weeks. Treatment options are working and I’m getting better and better every day. Yes, I have kidney disease that will never go away, but I’m okay and I can still do pretty much everything I want to. I’ve had to give up running for a time, but I still have yoga and I can swim and play tennis which I’m going to incorporate more of this summer to stay active. The best part is that I didn’t die and chances are I’ll never be worse than I was at my most depressing time if my treatment plan continues to work well.

Now that you’ve seen how things played out with me… I used my overachiever skills and my advanced youtube searching capabilities and found the giraffe video! It is just as funny years later although for more personal and ironic reasons. Here it is for your viewing enjoyment:

So, life, what’s the next chapter for me?

Did I say rock bottom? Just kidding!!

Remember when I said I’d hit rock bottom and then in jest said something about how I hoped it was the bottom because that would be a sick joke if it wasn’t? Well, I’ve learned the truth of ‘never say never’ and to never assume you’ve seen the worst it could be… because man did it get worse last week. Here’s what happened – in chronological order because I’m OCD like that of course.

First a confession… I already knew what I had on my last blog post – probably why I was already at the anger stage. My insurance company has an online medical record and if you are smart like me you know that those tests your doctor orders are usually online long before you meet with that doctor to see what they showed. So, Tuesday I saw the pathology report with my diagnosis: Membranous Nephropathy. And of course I googled the shit out of it.

Bottom line: there is no cure. The membranes in my kidneys are enlarged and therefor don’t work as well so I lose all my protein in my urine. But two thirds of the people diagnosed end up in remission so my chances are good. I met with my specialist on Thursday still a little sore and weak from the biopsy but having spent the better part of the week on my couch helped. She started me on several new meds and ordered additional tests including standing orders for them to be repeated every two weeks to monitor how well the new meds are working. So much for seeing the doctor and the lab less often, eh? Both meds are designed to treat the symptom of losing protein so I don’t also end up with my kidney function declining. I left the doctor with the knowledge that I really had the answers I’ve been searching for (ROOT CAUSE!) and a plan of attack. I felt hopeful and happy.

And then Friday afternoon I started feeling crappy. At first I chalked it up to having taken a higher dose of my diuretic which my doc said I could try to see if the water retention would go down faster (I’m not a patient woman, remember!). I also read on the information sheet of one of the new meds that I had started that it was common to feel run down and yucky when first taking the med. (Am I the only person who actually reads that whole paper they send you home with from the pharmacy?) I logged off work for a nap to try and feel better about two o’clock that afternoon. My kidneys ached and I couldn’t get comfortable and generally felt awful. Got very little sleep on Friday night and woke up Saturday morning no better.

Saturday morning an hour before I was supposed to leave for Big Sister’s dance competition where I was looking at nine hours on the high school bleachers, I couldn’t take a breath without excruciating pain in the abdomen which radiated up my back, through my chest and out my shoulder. The deeper the breath the worse the pain. I was faced with the hardest thing ever as an overachiever – the knowledge that no matter how much I wanted to power through whatever I had in my way I wasn’t going to be able to do it all. I still hate to think about it! Here’s something else you might not know about me: I hate asking for help. Of course it goes along with my overachiever tendencies because if I have to ask for help then I’ve made an irrefutable statement that I cannot do everything. So not okay with me and after all of these years of doing it all I am very, very set in my ways.

Luckily I have amazing friends who are also close neighbors. I called Mommy of Big Sister’s BFF who is also one of my BFF’s and a fellow dance mom since her older daughter is also on our competition team. She is like a force to be reckoned with in a crisis. As in I think that FEMA would be a great place for her in the event of a major disaster. Within minutes she had called Mommy of Baby Sister’s BFF next door who came and took her away – in her pajamas – to spend the day with them. And she rushed over to grab Big Sister and all her gear for the competition whisking her away to do hair and makeup and be her surrogate mamma for the entire 9 house so Hubby could take me to the Emergency Room at our nearest hospital.

Five hours I spent in the ER. Five. Hours.

Basically I was one of the few lucky people who’s kidney bleeds after the biopsy. The blood pooled under my diaphragm and created irritation both on the kidney and the diaphragm so every breath resulted in intense pain. Of course they ran a total blood work up to make sure there wasn’t anything else going on plus a urinalysis which confirmed there was blood in my urine and therefor my kidney. Then my blood pressure was super duper low and wouldn’t stablize so I had to stay a while longer – turns out I was a bit dehydrated. Gee, isn’t that what one would expect when I’m on a powerful diuretic and have liquid restrictions? Sheesh. I got some great narcotics to knock me out and curb the pain while my body reabsorbed the blood my kidney leaked out because there was nothing else they could do. Most of Mother’s Day weekend was a narcotic blur full of pain and suffering. Plus the emotional pain of having missed watching my daughter dance for the first time ever. Having to let go and accept that it doesn’t make me a bad parent was difficult but her surrogate mom for the day brought me video and score sheets so in the end I didn’t have to feel like I missed a thing.

This week has been much better. *knock on wood* My pain was gone by Tuesday and the novelty of taking a deep breath has returned. Each day on my treatment has me feeling better. I’m also using essential oils to treat the nausea side-effect of whichever med it is that causes that and to generally improve my mood. Hubby calls them my magic oils which might be accurate since they make me happy. I say “what does it hurt”, right? I even spent twelve hours at Big Sister’s dance competition yesterday like I hadn’t been in the hospital a week ago. Go me!

I guess the visit to the hospital showed that overall I’ve been super lucky in this whole journey. I’ve never been hospitalized even when both my lungs were half blocked with blood clots. I can still work and play and care for my children even if my house is less than pristine most days because I don’t have the energy for housecleaning on top of it all. And if I had to chose my kidney disease, I got the one I would have picked. The treatment is relatively benign, it is a slowly progressing disease where it would be decades before I need dialysis/transplant and my chances are higher of going into remission than progressively getting worse.

So yeah, I have kidney disease. But I’ll be fine because I can’t change it and I’m not going to sit around and wallow about why it happened or play the victim about why it happened to me. In truth, this specific thing happens to two in every ten thousand people which makes me just one of thousands going through the same thing right now. And I’m a master overachiever so I’ve got this in the bag. Even if it means going to bed a little earlier so I have the energy to kick ass as needed the next day…

Biopsy week and a glance down memory lane

Two years ago I was preparing for my first ever Ragnar race that was a month away. I ran two of those bad boys that year and logged well over five hundred miles on my running shoes. I was the healthiest I’ve ever been in my entire life after deciding in 2008 that I was done being unhealthy and unhappy and transformed myself into a runner. I think that’s why this whole ordeal has been so hard on me. I worked my ass off to be healthy and live a long life with my kids and my husband to end up two years later with kidney disease? That is bullshit. Fucking bullshit.

Monday I had my kidney biopsy. Afterwards, they handed me my instructions to go home with which I was awake enough to read through. To my surprise item number four read: “You may return to work in one week.” What the hell? No one told me this shit was going to take me away from work for an entire week! Don’t you think that is something you kind of need to tell people ahead of time so THEY CAN PREPARE? I was so pissed and I’m sure I scared the timid little nurse with my thunderous rage as she scurried out the door to get someone to talk to me. The compromise is working at home all week from my couch but only because I have one seriously amazing boss. Three days out from the procedure, I totally know why I needed this week off. I’m a slow-moving hot mess who is out of breath and has zero stamina. Is it time for my nap yet?

Today is what I have dubbed “Answer Day”. I have an appointment with my specialist this afternoon to go over whatever it is that the biopsy showed and where we go from here. My one and only question for her will be: how do I get back to where I was two years ago where I can run every day and have energy to keep up with my kids? Because that’s all I’m really interested in. This shit – whether it is curable or not – is not going to take the joy from my life. I may not get to choose whether I have kidney disease but I get to choose how I live with it! Wish me luck and workable news…