After weeks of doctors and nurses care, I was left to begin this journey I am now on. The doctors didn’t always agree what was best for me, but one thing I did learn was if I didn’t say something and make decisions on my own that were best for me, I had no one to blame but myself. So what does this look like, well as I mentioned in my previous blog, my heart and kidney’s are my problem, is short my heart beats strong sending blood through my body, but beating weak when bringing blood back through, causing water to retain in my legs. My kidney’s get mixed messages from my heart because of this they don’t know whether to keep the fluid (which we need and if something is wrong with us water is sent to the area of our body that needs it) or lose it. Because of this I was retaining water I didn’t need and eventually untreated I could have drowned from it. The million dollar question ~ How do we fix this?
Heart doctor tells me I breathe shallow, which comes from the way my heart beats strong on one side and weak on the other. They aren’t overly concerned with this, since this is how I have lived most of my life. The edema doctor would like to see me spend my days elevating by legs, the kidney and heart doctor want to see me walking and exercising while elevating my legs in between, and my primary doctor wants to see me exercising and elevating 3 times a day. For eating I need to stay under 1500 MG’s of salt per day and no more than 2 liters of ‘fluid’ a day, most of this being water. I am also on a water pill that keeps me hopping to the restroom frequently when I have taken it.
I am taking this very serious, I was very scared prior to my kidney failing, so if you are can relate to anything I have said so far, keep seeing your doctor and pound it out till you have a solution. I left my doctors office crying many times, I thought my life was slowly ending and no way of fixing it. Things were way off, outside of just feeling bad, I was tried, cranky, forgetful, inpatient, not eating, walking was hard, long distances were laughable, my balance, my knees, cramping, falling, the color of my skin, I would lose 30 lbs. of water and it would go right back on, and the list goes on. Many people are able to see ‘yes I know, you weren’t yourself’, but unless you were right there with me, no one knew how frightened I was, except my husband. I was having test done weekly because my leg was very swollen, red, hurting, I couldn’t eat and I was so tired. The test showed no blood infection, no bug bite, the BUN test was not out of line, blood test showed cholesterol was fine, blood pressure was always low (now we know why), ultra sounds found no blood clots. I would monitor the blood test carefully waiting for something to show, and finally it did.
As I mentioned before I finally agreed to see a metabolic doctor. Though I thought this was crazy because I was one step away from being anorexic but I went any way, I had my normal blood test done for the week as well for this appointment. Getting ready for this appointment my legs cramped and I fell in the shower, I knew I would be sore so I took Advil. My husband and I went to see the doctor, he was puzzled as well as what could be wrong, but we agreed to treatment, I decided to take a diet pill to suppress my appetite. Which I still think was crazy. A few days later my doctor called and ordered me into her office for additional testing. I was not surprised by this as my weekly test changed in one area, I didn’t know what it meant, but the phone call scared me, I contacted my husband and we went to see the doctor. After conferencing with a kidney doctor they determined I was in acute kidney failure and sent me to the emergency room. I was put on antibiotics and fluids and within 24 hours my kidney was functioning normally. The antibiotic changed 3 days later to fight an infection (though they still could not determine was it was from test) in my right leg, the swelling went down finally and the fluid was finally coming off me. To this day I will continue to be shocked by this, after 8 days in the hospital, 5 days in a rehab center and 2 weeks with at home nursing care, I was finally on the road to recovery.
After 4 weeks of professionals caring for me, I began follow up appointments with my doctors. The edema doctor, signed off fairly quickly as I was doing what was necessary to keep the fluids down causing the edema and infection, though this will never go away I don’t think. The kidney doctor, I saw her in 2015 and now in 2016, though I didn’t see her much she was very enlightening when I saw her. She asked me what I remembered, and I said who knows, I have been through too many doctors to know if I remember everything. She explained basically what was going with my kidney and the salt and water intake is how it is controlled. I hope for some good news in a few months and I will let you all know then. She reduced my sodium milligram intake from 2000 to 1500, and by this appointment I knew I would have to change some things. EVERYTHING has salt it!
I posted a few updates online and I brag about my low sodium meals just a bit. I never thought I would be able to stay under 1500 MG’s, so I share on social media my successes. In doing this I had some followers ask if I would post my recipes. I gave in quite a bit of thought. I am taking this very serious and I if I am going to share I also want it to be impactful. I have lost over 100 pounds (see my before and after picture) in water weight and I struggle every day to keep it off, so though this experience has some positives things for me, I could have died and I felt I was close to this. So this is why this blog is being made and I will share my recipes. I encourage you to share this blog, ask me questions; if I can help one person I will be happy. Knowing something is wrong, seeking professional help, to determine the cause, coming up empty handed and watching your life fade away is real stuff so please read and share.