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I am a 42 year old female who donated my kidney to my brother 7 years ago. Since the surgery my eGFR always runs low, sometimes it has even dropped to the 40s. My creatinine always runs just a little high. I am told my numbers show that I am in 3rd stage kidney disease but doctors say we shouldn’t worry as long as my numbers stay consistent. I have also recently found out my auto immune titer rate has jumped from 1:40 to 1:640 within one year. I have been passed around to specialist after specialist and no one has been able to figure out which ana disease I may have and if its related to the kidney failure. I believe it is. I tested negative for RA lab work and told by rheumatoid specialist I do not have RA but now my doctor is wanting to refer to another RA specialist. I have gained 18 pounds within one month and have not changed my eating habits so not sure why weight gain. Thyroid has been checked since every woman in my family is either hypo or hyperthyroid. One test barely registered on the tsh test but was within normal range month later. I have had thyroid nuclear tests that was ok. I have mild degenerate disc and mild scoliosis of the spine. My career involved lots of movement and lifting as I am a Paramedic trying to save the lifes of others. 3 years ago a disc went out in my back while sitting in class and has been causing me pain for 3 years straight with no relief. My legs go numb occassionally while I am walking. I am told I am most likely going through menopause on top of all this due to my massive hot flashes but cold hands and cold feet as long as I can remember. I have small white spots on parts of my face and arms that doctor said is just sun damage and pigmentation change. I have feeling that all this is tied together and I am beyond frustrated that no one can give me answers so that maybe if there is some meds or cure I should be on it. Only issue is that most of the meds that will help are steroids of some kind and with only one kidney apparently not doing so good, most will not prescribe it to me. I am told by most specialists I am a rare unknown symptomatic case and my doctor even suggested I contact the Mayo Clinic. I live in Missouri so its not a quick trip for me but at this point I would really like some answers and relief. Anyone that may any answers to help me would be appreciated. I am beyond discouraged. Thanks.
K Hill

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Replies to "I am a 42 year old female who donated my kidney to my brother 7 years..."

Kim, I’m so sorry to hear about all the trouble you’ve been experiencing. We’d like to help. If you’d like to make an appointment, please call 866-249-1648. Or, if you’d like to speak with one of our kidney transplant physicians, please send a brief description of what you’d like to discuss, your name and phone number to transplant-rst@mayo.edu.

I wish there was something that someone could do or maybe give me answers. I don’t live close by to your faciliites and have always have complete faith that if anyone could give me some kind of info, it would be appreciated. Thanks.

Kim Hill, living donor

Hi Kim,
We have many similarities. Although I have not donated a kidney, my father donated a kidney to his brother and ten years later passed away from kidney cancer, so kidney disorders do run in my family. I am soon to be 58 years old but for several years, I have had intermittent issues with high creative levels and low gfr blood levels. At one point, routine bloodwork obtained by my PCP indicated that I had a massive coronary as well as very high DDimmer levels which indicated a blood clot. I spent several days in the hospital without any definitive answers. I have suffered from DDD (neck and back surgeries x 5) and I was diagnosed with fibromyalgia and referred to an Rheumatologist. After years of repeated testing and the obvious, unexplainable RA symptoms, I was also diagnosed with RA, Minus the RH Factor. Several years later, I collapsed in a store and when the paramedics arrived, my blood pressure would bottom out and then suddenly shoot through the roof. During this time, I maintained a steady cardio sinus rhythm. By the time I reached the hospital, nurses thought that I had been drenched with water in an attempt to revive me but my shirt and bra was completely soaked solely from the amount of sweat my body was releasing. I was kept in the Cardiac Monitoring ICU for three days before my cardiologist determined that I was suffering from Cardiac Aortic Spasms. Basically, my major artery was clamp shut, not allowing blood to enter my heart although my heart continued to beat normally. Then my artery would completely relax, allowing my heart and outgoing veins to refil with blood which caused my blood pressure to drop quickly and significantly. This continue for several hours in the ER before I was admitted. During my three days in the Cardiac ICU Monitoring Ward, I wasn’t allowed to eat of drink Anything, in case they would need to preform emergency surgery. Doctors had not yet determined what was wrong with me. After three days of being hospitalized, I was given the diagnoses of Cardiac Aortic Spasms, released from the hospital, told to follow up with my cardiologist And visit my PCP. Upon seeing my PCP, she said that the hospital had recommended that she recommended that I see a nephrologist! At No Time during my three days in the hospital did Anyone ever mention Any problems with my kidneys. Upon visiting the nephrologist, he informed me that when I was admitted into the hospital, I was in complete kidney failure!!! Imagine my surprise when he told me that my kidneys were functioning at the level of a 70 year old woman (I was only 52 at the time!) He also told me that the damage to my kidneys could not be reversed but he could keep it from getting worse. Apparently he felt that my kidney damage was caused by a combination of my Losartan (for high blood pressure) and my Meloxicam (which I was taking for my RA symptoms, ie unexplained, extremely swollen joints) After being off of those two medications for three months, getting new blood work and returning to him to determine whether or not he wanted to start me on dualists. Once again I was surprised that my kidney function had to returned to 100% Normal. He said that he did not need to see me any longer but recommended that my PCP track my blood work every three months and to return to him immediately if I had any other problems. By this time, after exploratory surgery for my bulbous knee and PT refusing to continue with my physical therapy because it was causing my knee to swell even further, my Rheumatologist started me on weekly methotrexate injections and bi-weekly Humeria injections. During this time, both he and my PCP were monitoring my blood work every three months! This mast November, my PCP found my blood work to be in normal ranges but the blood work taken by my Rheumatologist in December looked … in his words, “Horrible!” My liver enzymes were very high and my kidney function was extremely low. I was ordered to have repeat blood work done by my PCP immediately. The blood work results taken by my PCP all came back within normal ranges! My PCP now preforms blood look every three months. …. (Also during all these years, my thyroid blood work would be off the charts until I went to see an Endocrinologist, where my blood work was Always at normal levels when taken by him! So I eventually stopped going to see him, against my PCP’s advice. I told her to just keep monitoring my blood work herself and if it got bad again, I would return! …. Now, after being on the methotrexate for a year, it was helping but it was not relieving all of the selling in my joints so my Rheumatologist started me on Humeria injections. Other than a little nausea, I had no side effects and the swelling in my joints was now normal! …. Until six months later. Unexpectedly, two days after my three month checkup with my Rheumatologist, I woke up on Saturday morning with a golf-ball size, dark red, extremely painful knot on my elbow! I documented daily changes through the process. My Rheumatologist attempted to treat me with a series of prednisone which did nothing at all. The next week, he attempted to drawn fluid off of my elbow, as he had always done to my knee put no fluid was coming out so me on a course of antibiotics. The next week, he called to check on me. By this time, the swelling and redness had extended half way down my forearm and continued halfway up my bicep! Oh, and all of the outside skin had fallen off of my elbow, all the way to the meat! He sent me to see a surgeon who immediately preformed immediate surgery to debrief my elbow to remove all of the rotted tissue and infection! This was followed up with a drain being placed into my arm for four days and then three months of hard cast, that had to be placed from my fingertips to my armpit, with my arm remaining in a straight position. After 14 days of the first cast, it was removed and the skin on my elbow was finally thick enough to remove the 14 metal staples he had used to close my very long incision. However, the skin was still to thin for me to bend my elbow so I went through two more hard, straight casts, which basically left me bedridden because the casts was to heavy for me to carry around because I could not use a sling to help me! I was finally placed into a well cushioned spot cast which I wore for another moth. It took several months for my elbow to become desensitized before I could regain my mobility! … I was only out of the soft cast for a few weeks when I contracted what I thought was a typical bladder infection! After lab results were confirmed twice, I discovered that I had picked up a bacteria that is only found in hospital settings. I was referred to an infectious blood specialist which resulted in me having a Heart PICC placed into my arm so that my husband could give me IV antibiotics, three times a day from home. Because the IV line went up my arm, across my chest and down into my heart, I was once again confined to bed! I took two 10 day courses of IV antibiotics, at which point, he thought the bacterial infection was gone. Two moths later, the same colony of the same bacteria had grown so large, I was extremely ill. I requested to see a different Infectious Disease doctor. They placed another Heart PICC in my arm and gave me another two day course of IV antibiotics to take until I could get in to see the new doctor. Both Heart PICC Lines remained in my arm for two months! The new doctor said there were only Two IV Antibiotics left in the toolbox and I had already had three doses of one of them. His plan was to give me one large dose of the second IV antibiotic but when my culture came back from the lab, he had changed his mind and ordered a ten day course of the “last IV drug in the toolbox”, so if my body becomes immune to this antibiotic and I get another infection down the road, they will have nothing to treat me with! After that dose, he pulled the Heart PICC Line and sent another culture to the lab. The sample came back that I still had the same bacteria but the colony was now at much lower levels. His plan now is to treat me with a Crystal Antibiotic which I mix with water and drink every ten day! He wants to continue this course for six mo this or longer. Last week, I became very ill with a UTI. He sent off blood work and another UTI sample. He’s taken me off of the Crystal Antibiotic and given me a ten day course of Cipro. After I finish this round of oral antibiotics (which this bacteria is Not resistant to) I am suppose to go back to taking the oral Crystal Antibiotic but take it every eight days instead of every ten days. … I’ve started having several back pain and running fevers so I am scheduled to get three MRIs tomorrow. … I, not sure what the outcome of my condition will be but I do hope that you have better results with your fluctuating blood work and RH Negative RA than I have had but I do pray you will be well. God Bless and may the doctors be able to help you more than they have helped me. …. On a side note, I have several cysts located on my kidneys and liver. Ultrasounds indicate that they are fluid filled sacks which are harmless. I had a large cyst removed from the back of my arm yesterday. It was also suppose to be nothing more than a fluid filled sack but it was a black, unidentifiable mass. It has been sent off to the lab but it is the largest mass ever removed by my dermatologist.

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