I lost a kidney and have just recently found a path to take because a Doctor took the time to listen and realized I was not a hypochondriac or a big overly sensitive, stressed, depressed woman. (yes, lots of justified sarcasm).
I was athletic, very lean and continued to stay fit by enjoying bike rides and playing recreational co-ed softball. However, when I started a family at 25, I had horrible toxemia, pre-eclampsia, protein in urine etc. Bounced back just fine. Had another baby at 27, mild toxemia.
BUT......THE NIGHTMARE BEGAN AND I WAS MISDIAGNOSED FOR 14 YEARS.
1995. After my 2nd child, I tried Norplant only to read 2 weeks later it was being pulled off shelves. 5 months later I had it dug out of my arm because I had almost every side effect listed. Then I was so sick for 2 years..... BP up and down, shortness of breath, thyroiditis, postpartum depression, allergies and asthma medicines 24/7 but lungs were clear as a bell, pain in my pelvis, left front bottom rib and back pain along the lower right and mid-flank area, sleeping problems, eye blurring and horrible horrible fatigue. Days and weeks where exhaustion & fatigue and horrible brain fog were so bad that I would remind myself through the day "Don't forget to pick up the girls, don't forget to pick up the girls" and literally take a few minutes in the car to distinguish which leg went to which pedal. So much pain and nausea that I could barely sit upright and drive 4 miles without worrying I might pass-out. These symptoms cycled leading a GYN to be suspicious of Lupus since I also had the bright red flush across the nose, cheek to cheek. Another Doctor said it was postpartum depression and thyroiditis and it would reset itself. I had lost strength in my arms where I couldn't twist the plastic cap off a bottle of Coke. I was using gadgets that elderly arthritic patients use. And the pain in my forearms was excruciating..........as if someone had cut down to the bone, drilled a large hole and let acid pool up in it. Letting it just seethe into anything it could and rot away the tissue and bone. That's the only way I can explain it.
1998-1999. At some point my PCP sent me to a Rheumatologist. Just another specialist among the many gastroenterologists, allergy DRs, ENT's, etc. ......So many physicians that blew me off that in my misery, I cannot recall some physician visits at all. But this lady did blood work and said I had fibromyalgia and Sjogren's. Told me the basic line - Sjogren's would give me dry eyes and dry mouth. Nothing to worry about. She gave me Plaquenil for 6 months. I was miserable, took the medicine, and got my life back for a little while. Not realizing it was due to the medicine.
That was 2000. I remember it very clearly since I felt like myself again. I had gone back to college to earn my Master's. And my husband and I even went on a 2 week, camping & hiking trip around the Great Lakes then made our way from S.St.Marie to Toronto to Niagara Falls. A wonderful trip with no aches, pains, or fatigue and we were hiking at least 12 miles a day.
2001. My health started faltering again, 2002 was worse .....and in 2003 , a new Doctor that replaced my old PCP, almost made me jump off the table when she pressed on my right kidney. Then tests began. I credit this new DR (Dr Judith Moss, DO) to saving my life. The previous PCP knew my left kidney was deep in my right pelvis, knew I had Sjogren's and was positive for an autoimmune problem but did nothing. All I was told was that my left kidney wasn't in the proper place and I was being oversensitive. I don't know how many medicines I was prescribed that did absolutely nothing. It was an annual event for my to throw them in the fireplace at New Year's. The misery was the same without the medicine, so why pollute my body. I also began to avoid DRs because who wants to be told they are looney all the time.
2002-2003. I was between resting in bed or a recliner a good deal of the time. At least when I could between running kids to school, soccer, dance, martial arts, church and miscellaneous other things. Dr Moss, DO had me on a path to find out the source of my problem. First we found out exactly where my kidney was in an X-ray, then that I had strictures, then that the kidney function was decreasing 32% - 27% - 25% - 22%.
I was even sent to a TOP 10 kidney specialist in Dallas who let me walk out the door saying my symptoms had nothing to do with my kidney. She said when the kidney function was down to 10%, they would have to do something. So I guess that meant, suffer til then.
Blue Cross Blue Shield kept sending me to whoever to get rid of me. Finally out of pure luck, I found a surgeon. I was down to the last kidney specialist on my HMO when she walked in and told me there was nothing she could do (just like all the rest)...........
HOWEVER...............SHE KNEW SOMEONE THAT COULD.
BCBS refused my requests for 9 months until I filed a complaint with the State Insurance Board. I had approval by 5 pm that very day. My PCP was also preparing a complaint to help push things through. I had an appointment at UANT in Arlington with a Dr David Lee, MD.
2004. Dr David Lee, MD listened. When I got home, I was so distraught that he was going to ignore me that I sent him a fax begging him not to dismiss me. I was worried he would not question the opinion of a TOP 10 US specialist. I told him I would even donate the kidney if that was possible. He informed me of all the options and consequences. I had the kidney removed Jan 12, 2004, was walking .1 mph a week later (yes, the elderly seniors were sprinting past me, lol), but on my bike riding 16 miles after a month. The total healing process took 20 months til the small amount of pressure finally disappeared.
JAN 2004 to JAN 2007 were perfect. I had a surprise pregnancy and everything went perfect. But about 8 months after the birth, (Feb 2007) I thought was having panic attacks, then the allergies, shortness of breath, fatigue, etc came........allergy medicine's and postpartum depression medicine's that didn't work. I just kept thinking, IF I COULD ONLY GET SOME SLEEP!!!! My body would not rest, I had so much trouble sleeping.
October 2007, everyone in the house came down with a severe flu. My husband and I each briefly passed out. Then November a stomach virus. In December, something hit me so hard I went to the clinic and received shots and respiratory medicine. For the next 15 months, I had a dry cough, off & on flank pain and fatigue that would not go away and caught something just about every 5-6 weeks.
August 2008. My first visit to the ER. I had been having kidney pain and thyroiditis all year. But it reached a point one morning that I managed to get the kids off to school and the baby to the nursery, made it home and lied down thinking rest would help. My heart started racing and the room was spinning. I couldn't sit up without thinking I would pass out on the floor. For the first time in my life, I knew I could not drive myself. I had to have my husband come home and he was so startled that instead of going to the hospital that removed the kidney, he turned around and headed for the nearest hospital. I had a kidney infection and blood work showed enzymes where the Doctor made me stay in the CICU overnight. After a few rounds of morphine and nitroglycerin, the pain went away, BP dropped and heart stopped trying to jump out of my chest. Unfortunately, the Doctor treated it like a panic attack.
At New Year's 2008, my best friend that I grew up, who has Sjogren's (which makes me wonder about coincidence and terratogens), mentioned that it sounded like my Sjogren's was the culprit. She is quite knowledgable as her mother died of Lupus and she is in the medical field and does have Sjogren's. (So not your typical over stressed, whining homemaker.) Then oddly enough, I ran into Dr Moss for the first time away from her office and on a wild hunch asked her about Sjogren's. She told me to make an appointment.
2009. My insurance changed and I had to pick a new DR. He gave me allergy medicine and nasal spray then sent me to a cardiologist for the shortness of breath. Did not address the nagging kidney pain or fatigue. Told me I was older with a new baby, I should expect to be tired.
February 3, 2009, Superbowl Sunday, I was so sick with flu and never experienced such severe pain in my life. It was the hips down. Hips, knees and ankles. I had a few prescription painkillers in the cabinet but darvocet and viacodin barely took the edge off.
The Insurance PCP didn't seem to be taking me serious when I asked him about Sjogren's. And dismissed me when I asked for a referral to see a Rheumatologist. He had just given my friend a referral to one for ankle pain without blinking and I kept her company on the 2.5 hr drive to see the specialist. Said he didn't think I needed to and gave me more prescriptions for allergies. I wasn't satisfied with his response that day so I finally made that call to Dr Moss and saw her several days later.
I was cleaning out my bathroom when I noticed a large index card with notes on it regarding diagnosis' over the years from doctors. I ony had these notes because I knew something was definitely wrong and the medicine wasn't working, so I was trying to make sense of it myself.
ANYWAY, it flipped over in the trash can and I noticed my notes on the back and realized the same pattern of events were reoccurring that happened after my second child. I brought this card in when I showed up for my appointment with Dr Moss and showed her the short list of diagnosis' and dates in my past and asked about the coincidence in a pattern reoccurring. She did blood work. She called me herself in a few days and insisted I take my results to my Insurance PCP and get a referral to see a Rheumatologist.
The new INSURANCE DR dismissed Sjogren's as well as the blood results showing a problem.
SO I WENT BACK TO DR MOSS, D.O. AND PAID OUT OF POCKET SINCE SHE KNEW MY HISTORY AND DID THE MOST FOR ME.
She put me on Plaquenil. On the follow up 4 weeks later, she noticed an amazing improvement in my appearance, as did my friends. She said the Plaquenil would have done nothing if I was just being a hypochondriac. She really could not understand why the INS DR would not refer me to a Rheumatologist, so she offered a referral.
I have to pay the visit out of pocket but the labs will be sent through my insurance. I have an appointment this month.
AS FOR THE PLAQUENIL....... In 2 weeks, I could take a good deep breath. 4 weeks - pain in my hips, knees and ankle went from a 10 to a 2/3 scale and my kidney pain disappeared altogether. 6 weeks - fatigue was starting to lift (AND I STILL HAD A BABY IN THE HOUSE, imagine that).............8 weeks - brain fog is lifting and have not used ANY allergy medicine since starting Plaquenil.
so June 2009, I now have a diagnosis ... SJOGREN'S. Not the dry eyes and mouth, but Sjogren's that attacks the kidney, stomach and lungs. And yes, I expect future doctors to debunk that and say that is rare. Well you know what.....so is a true uncrossed gross renal ectopia that I had and was also scoffed at. Just amazing how so many physicians have bandaid-stand philosophy, thinking everyone is a hypochondriac and fit into the common problem category. If that was the case, we wouldn't need Doctors, just a knowledgible pharmacist to hand us common drugs.
And after reviewing my file, Dr Moss and I think there is a strong chance my kidney died as a result of Sjogren's.
Sorry its long, but I actually left out a lot. This is very a very short abstract in regards to what I actually went through. I'm sure I left things out, brain fog is still there. But this is a short synopsis of my health saga since Autumn 1995.
HOWEVER, Dr Moss, DO is relocating to be near family and she did a thorough review of my records and I agree with the conclusion...it fits all the past symptoms and plaquenil works where all the other medicines didn't... Sjogren's may have been my problem from the start but was misdiagnosed. It may be what caused my kidney to died off.
For now, I'm on Plaquenil. I don't like pills but who cares, this prescription definitely works. So while there very well be another or more autoimmune illnesses attached to Sjogren's......I'm feeling better and on the right path. Hope this might help someone or maybe you can email me and help me with your story.
I would greatly appreciate hearing from everyone that has had it affect their kidneys. I am very worried about my future with one kidney.