Remission is Possible by Amy Haas
Acknowledgements - for the glory of God, the strength and compassion of my husband Craig, and for the innocence of my daughters, Courtney & Evelyn
Once upon a time there was a beautiful woman. Full of life and love and joy. On days that she felt well, she would have her daughters invite their friends over and they would dance and sing to the stereo (“I Love Rock N Roll” by Joan Jett was a fave). They would bake up a storm or go to the lake or go to aunt Donna’s and have popcorn and watch a movie. She was cute and fun and everyone loved her. She was my mom. And she was very, very sick. She had countless hospital stays and surgeries including a kidney transplant. We all thought that was the solution and that life would move to normal. It wasn’t to be. She passed away at 39. Knocks the wind out of you. I was 10. My sister 7, my brother 18.
I have also been sick as long as I can remember. So have my sister and nephew. No one could ever figure it out. My sister and I knew we had the same thing, but what? I did everything to figure it out. Doctors from Iowa, South Dakota, Minneapolis, nothing. Tons of labs, x-rays, colonoscopies, CT’s, MRI’s, I have drank more barium than I care to think about. Thank God for my elevated sed rate, or doctors probably would have dropped me.
After the birth of my first daughter (Courtney), I felt horrible. I remember my sister telling me that bladder and kidney infections do not have the same symptoms postpartum, so I went in to the doctor. I had proteinuria. The doctor said that I had protein spilling into my urine. The lab was rerun a few times and the numbers kept going down. He thought that it was possible that it was from all of the ibuprofen I took for postpartum pain and I was banned from ibuprofen.
My husband and I went back and forth on having a second baby. I was struggling. I had always wanted three and here I might not even have a sibling for the first? After a couple of years, I went back to the nephrologist and then to my OB to ask for their input. Neither seemed to concerned, so we decided to go for baby number two. Evelyn was born on April 21, 2007. A few short weeks after that, I woke up one morning to find that I had gained 10 pounds overnight and it was all in my feet. It was horribly painful and to be honest, it sickened me. I wouldn’t say I am a vain person, but they were so bad I was embarrassed even for Craig to see them. I went in to the doctor’s office and the proteinuria was back. Odd that it hadn’t surface the whole pregnancy. The nephrologist stepped in and did a kidney biopsy. I remember so well when he called. Wish I couldn’t. I knew amyloidosis. They had found it in my mom’s intestine at autopsy. When he said you have amyloidosis, I thanked him for t he crystal ball. I still haven’t called to apologize for that yet. I have to though. My soul isn’t right about that. He tried to tell me there were options now, that he’d get me into Mayo or whatever it took. The next thing I remember I was on the phone with my husband telling him to get home immediately, I was losing my mind. Remember, I was roughly 5 weeks postpartum. My baby was somewhere (God help me, I don’t remember. Sleeping in her bassinet?). Courtney was at daycare, thank God. After that, all went to pieces. I didn’t just see my life flash before me. I saw my future being wiped away. I saw NOTHING. When I looked around my kitchen, it was in pieces. I still remember that. And then I went face down on our kitchen tile and prayed. Prayed for the cup to pass me. But not my will…Yours. His will is better, that I can now attest to.
Fast forward to the Mayo trip…
I remember the week of July 18, 2007 all to well. That date will never pass by me again without my knowledge. I don’t think that I will ever know the correct word to assign it - sorrow, fear, apprehension, distress, terror, or is it relief and joy at finally moving forward?
Those of us who struggle with health issues have heard it a million times from doctors, nurses, etc. “So Ms./Mrs./Mr. X, tell me what brings you in today.” I was so rehearsed, I was bored with myself. I have told a few doctors if I took a stab at the lab results prior to testing, if I was right on, did I really have to pay for them? Seriously, when you have been poked and jabbed throughout your life, you can pretty much nail a sed rate. Cake. I had met a hematologist at Mayo, done my first round of blood work (13 vials, aka “the blood letting”), met for 2 hours with their genealogy department (I am way closer to my aunts and uncles now!), and now was on to the nephrologist. I guess, if you really think about it, few of us are lucky if we can define moments in our lives that change us forever. Not just a wedding, or the birth of a baby, but completely and utterly redefine who we are. A point in time where everything changes. This was it for me, and probably for my husband and my daughters. My husband and I were greeted by Dr. Nelson Leung. He sat down, introduced himself, and of course, asked me what brought me in to see him (or some variation thereof). After all that I had been through over the course of 35 years, not to mention the last few days at Mayo, I think that I actually clucked my tongue at him and I KNOW that I rolled my eyes. All I could think was, “is this joker for real?” All of my past records are in his hands, I have laid out my family tree for genealogy, and now this? Again?! So, I started with my mom. That is where it always starts. My mom was such a sick woman and riddled with such pain. For her, family lore has it, she was very sick as a young child and it was determined that she had undulant fever. At that, Dr. Leung lightly said, “oh, we can test you for all sorts of fevers.” Huh? What? 35 years of pain, testing and shuffling back and forth from specialists? It can’t be this easy. But it was. I had my answer. My life would change.
Dr. Leung went to the GeneDX website and pulled up 4 fevers. He printed them off and had me read them and asked me which was most descriptive of me. I picked TRAPS, but tested for all. These tests would take up to 4 weeks, and if I was wrong…well, I just couldn’t wait any longer. Testing did come back as TRAPS (aka Familial Hibernian Fever). My treatment? A simple, every other day dosage of dexamethasone. Results? Phenomenal! All lab work is in normal range. My amyloidosis has been declared to be in remission.
Those are the hard & testable results of the diagnosis & treatment. There are also soft, or immeasurable results. The skies the limit on those! Where can I start…I can dream of the future again. I can assume that I will be here for my girls to help them grow up. I can grow old with my husband like you always hope you will. I am able to exercise consistently for the first time in my life! I never thought that would happen, ever. I love it, love it! I am a runner. I have run two 5K races and am hoping to do two more this holiday season. I am a stay at home mom now. I didn’t know if I’d ever physically be able to do that - HA! I can chase my daughters all day long, rake our yard, go to the gym, go on my daughter’s field trip for school, go camping with my family, throw a Halloween party in my home for 14 kids under the age of 5, whatever. I never knew how sick I was, until I was healthy. I have a strong urge to toss our couch. If I let myself think about things, I hate the thing. Just hate it. How much time I spent on it, in agony nonetheless.
It isn’t all perfect. I do have my flare ups now and again. But they are so mild and short lived. A good reminder of where I have been and what I have to be thankful for. A reminder to use this gift wisely. A little personal motto of mine has become “I run because I can.” There will be a day (I hope it is when I am 101) that I can’t run anymore, so I sure as heck better do it now. And I have changed the saying “use it or lose it” to “lose it, because you will lose it“. We all will. I have heard people say ain’t none of us getting out of this thing alive. So live while you can. If you feel good, enjoy it. If you aren’t feeling good, save your strength until you are and do what you can to enjoy yourself, even if it has to be from the couch (I know how much you hate that, I really do).
It can happen though, remission. There is hope. It takes a heck of a lot of work to get there though. Not to mention a strong relationship with God, and one heck of a smart doctor. And the patience of many. So many didn’t give up on me. Countless friends who have seen me sick for years (and now I am that annoying healthy girl - why do they put up with me?!), my family, my rock of a husband, my beautiful, beautiful baby girls, everyone at church, so many cheering me on. Oh how we need them! You can do this. One foot in front of the other. One appointment, one nurse, one lab, one doctor, one insurance dispute, one procedure at a time.
Am I angry? No. Why. From all I have said, life is too short for anger. Yeah, I wish that TRAPS had been determined in my mom’s case. But she passed away in 1982 and TRAPS wasn’t discovered until 1986. And I can’t go there. To know that a simple steroid regimen would have her here with us today. Can’t. Go. There. I am here now. I will be a voice for us for now and as long as God gives me. You can too. And be an advocate for yourself. It is hard work - jumping through all of the hoops…insurance, appointments, finding a doctor that will listen and happens to have just the right exposure to knowledge on your symptoms, but the hard work pays off. Truly.
Oh, and I was hit by a car when I was 11, so I have that covered too! Now I just have to watch for that bolt of lightening…
God bless you all on your journey whether you are patient, care giver, supporter.