My Personal Battle against Kidney Disease… I hope my story can help you write yours...
I'm not sure how to share my story/my illness with you. So, I guess I'll just jump in and hope you can follow. I always imagined that I would die young. My father collapsed at age 40 of heart disease and I just assumed it would happen to me. So, imagine how relieved I must have felt as I neared the end of my 40th year. Wow, I thought … I'm in the clear… it was all in my head… then one day I woke up… my eyes and ankles were swelling and I had begun to rapidly gain weight. You would think with running my own business, being a wife and a mother, and exercising at least 3 days a week that I would be healthy. I wasn't healthy.
But like most people do, I just attributed my symptoms to the stress of a busy and full life. However, over the next few days, my symptoms just worsened so I decided to see a general practitioner. Of course, with the health care system being what it is… I was pawned off on a nurse practitioner who diagnosed me as being spiritually unwell. I was speechless… spiritually unwell? What does that mean? So off I went back to my office to finish out my day. Unfortunately, I could not concentrate on the work at hand because I just knew something horrible was wrong with me. Frustrated with the day's diagnosis, I telephoned my husband at home to discuss what I should do next. It was at that moment we made the decision to pursue our own specialist.
But what specialist should I see? Who knew there were so many types of doctors? Well… knowing that diabetes runs in my family, I decided to contact an endocrinologist. God must have been with me because I just picked him out of our healthcare directory and it just so happens that he is one of the best endocrinologists in our region. Upon arriving at his office, his nurse took a urine sample and immediately found protein and blood in my urine. My husband and I were shocked. With all the edema on my body, why didn't the nurse practitioner who initially examined me order a simple urinalysis weeks before? She had ordered x-rays and labs but NO urinalysis. My husband and I heard the specialist mutter, "… this borders malpractice." Bottom line, if I had listened to the nurse practioner, with my cholesterol at 458, it would have only taken a few short months for my arteries to become blocked. I would have died from coronary artery disease before kidney failure, just like my dad.
Armed with the new information, the endocrinologist ordered a 24 hour urine and several lab tests. Once they were completed, the doctor brought me and my husband into his office, sat us down… and said you have Nephrotic Syndrome. The protein in my urine was over 9 grams. My total cholesterol was 458 and my blood pressure was elevated. He was so concerned about my health that he immediately contacted a nephrologist. So… to make a long story short, we met with the nephrologist who performed a kidney biopsy and further tests. He determined that I have Nephrotic Syndrome, and Primary Membranous GN (idiopathic kidney disease).
Now that I've explained my symptoms and how I was diagnosed, I'd like to share my personal battle with you! Nobody is ever prepared to deal with a catastrophic illness; it's just not possible to be prepared mentally, emotionally, physically, spiritually or financially for something as devastating as a long-term illness. The emotions that I felt were overwhelming. I felt angry because I had lived a good life and couldn't understand why I was being punished. I was only 41 years old. I remember saying to my husband, "This is it? It's over? I'm not ready for my life to be over! I'm not finished yet!"
So, after feeling sorry for myself for a few months which by the way, is a major waste of time, I decided to take control of the situation. It was time for me to learn how to best treat/manage my illness. I read every medical article and study I could find on my particular illness. It didn't take long for me to realize, I needed to be more aggressive in my treatments. Unfortunately, my nephrologist didn't agree with me. He was old school and wanted to take a wait and see approach. So, he just treated the symptoms of my illness, using large doses of diuretics combined with blood pressure and cholesterol lowering medications. When I tried to discuss with him, a more aggressive treatment option, he said that "he" wasn't prepared to pursue a more aggressive treatment plan. I was so frustrated with him. I wasn't asking him to perform an unconventional treatment plan, just a more aggressive one and I certainly didn't feel like that was anybody's choice but my own. I wasn't getting better. I wasn't able to work any longer and I wasn't going to just sit and wait to die! I wasn't going to be helpless, be a victim… So, here's what I did to achieve my remission:
· KNOWLEDGE IS POWER. I learned everything I could about my disease and continue to do so. Every time I visit my doctors, I have a list of questions. It's never ending for me.
· MAKE YOUR OWN CHOICES. I didn't leave it up to my doctors or put that burden on my family. It's my life, my choice. I chose to find doctors that were reputable, would listen, and were up to date on the latest advances in treating kidney disease!
· IT'S PERSONAL. I'll never forget the day when my then 16 year old daughter, came into my office and handed me a photo. It was a photo of me just before I became ill. I asked, "What's this about?" She replied, "I want you to take this photo to all your doctors and tell them about yourself before you were a patient, before kidney disease. Tell them I want my mom back." For me, I think that was the turning point. I took that photo to my doctors and they couldn't believe it was me. They were shocked. I told each one to imagine their life as it is today… how hard they had worked to get through medical school… to build their practice… become financially independent… and raise their family… THEN… imagine what it would be like one day to just wake up and life as you know it is gone." Remind EVERYONE in your life … that while your body may not be cooperating… and you may not look like yourself… that you're still HERE! You'd be surprised how attitudes improve.
· DON'T BE AFRAID TO ASK FOR AND ACCEPT HELP (a good support system in critical). I've always been independent and I just had difficulty asking my family for help and accepting it. I couldn't accept the fact that I was no longer super woman. I had to turn the business and finances over to my husband… surrender control of everything in my life and just focus on getting better. I remember a time during the course of my treatments when I developed Cushing's Syndrome. It was so severe that the disability doctor had his nurses examine me because he believed they would never encounter it again in their career. I couldn't even bend over to tie my shoes. I looked like a freak. It was so humiliating! Do yourself a favor… make it easy… accept help (i.e., physically, financially…) and just say thank you.
· DON'T FEEL GUILTY. That's a tough one. I felt like I'd let myself, my family, my colleagues… everyone down! Just remember, it's not your fault. You didn't do anything wrong. It just happened and remember it's not just happening to you. Everyone who loves you shares in it and carries the burden.
· BE POSITIVE… SMILE! What's the alternative, depressed and crying? It didn't help me. Although, I must admit, a good cry every now and then can be productive. And whatever you do, just excuse the ignorance of people. For example, a very close family member excluded me and my daughters from a family gathering. I was very upset. She came to my house after hearing I was upset and started asking questions like… "Are you dying?" … I told her not today and I assured her that she couldn't catch it. So, you'll just have to forgive people's ignorance.
My Happy Ending… I was diagnosed with kidney disease (Primary Membranous GN), Nephrotic Syndrome, severe Allergic Asthma, Fibromyalgia… in late 2005 and early 2006. During the course of my treatments (immunosuppressive therapy), I also developed severe Cushing's Syndrome then hypoadrenalism. I had what is known as a multiple system breakdown. In addition, my bones were so weakened, I experienced a severe injury (lisfranc) to my foot, just walking to get healthy. This resulted in two surgeries. And… that's not all! In an attempt to battle the weight gain, I obtained a gastric lap band which slipped during my Cushing's Syndrome, two more surgeries.
It's been a long road and there were dark days. BUT, as of September 2008, I'm in remission… and my doctor does not expect that it will return. Of course, there are no guarantees but I'll take it. My kidneys have improved so much that they are functioning normally. My adrenal function has returned to normal. I feel better each day now and I'm even starting to look like me again. The future looks good. I'm thankful and optimistic.
So, when you are so tired you can't get up… when you look in the mirror and don't recognize yourself… when you're kept up all night from your muscles cramping everywhere because they can't pump enough potassium in you to keep up with the diuretics… when your feet crack so deep you can't stand to walk on them… when you feel like all you do is see a multitude of doctors each week who have made you into a human pin cushion and your veins are collapsing … when you're trying to choke down more drugs then food…when you are at your darkest moments… remember there is always HOPE! There are happy endings! And if need be, feel free to reach out to me. I'd love to hear your story!