Many of you have heard through the grapevine that I was recently diagnosed with end stage kidney disease. Mostly because I’m selfish, and it’s much easier for me to write a story once rather than tell everyone individually, I’ve decided I’ll re-start this blog with the story of my diagnosis, as well as what we know so far.
On December 26th, I was at my parents house for Christmas and I was fatigued, congested and coughing, so I went to a local urgent care and was diagnosed with bronchitis and sent away with an Rx for an inhaler and steroid. Two days later I went back to DC (where I was living) and continued with my life. After a few days, I started feeling worse, however, I assumed it was the side effects from the steroid, as there are so many horror stories I was reading on the internet.
After a few days of barely being able to make it up the stairs, I finally decided it was time to go to the emergency room in the late hours of the night on Friday January 8th. I was assuming my bronchitis had progressed to pneumonia when I was literally sitting in bed and could barely breathe. So my aunt packed a bag I slid down the stairs on my butt, and after a debate on which hospital we should go to (there are quite a few in the DC area as you could guess) we were on our way.
If you ever need to get into the emergency room fast, just tell them you can’t breathe. Literally they took me right back, and there were other people waiting in the waiting room. After getting asked at least 55,000 if I have asthma they finally got the memo that I do not after my response was “Unless I have sudden onset severe asthma at the age of 24, then NO, I do not have asthma.” The nurse was very nice and gave me this magical breathing treatment which made it much easier to breathe, but did not make my breathing normal. Whatever that was I really want one for the next time I actually have a cold because it was THE BEST.
So the whole time I was getting these breathing treatments I had about three nurses trying to get my IV line in because I have the worst veins ever. A breathing specialist (I think thats what he was at least) came in and had to take blood from an artery (I think this is what he was telling me) so the nurse just had him take blood for all my labs since my veins were not cooperating. Then we continued with more breathing treatments, and more poking to try and find a good arm vein.
Eventually, the ER doctor came in and said “Stop everything, she is in kidney failure.” I looked at my aunt and said, “well I guess we better call my mom now, and tell her to pack a bag.” I had elected to not call my mom, who lives 4.5 hours away in the middle of the night for pneumonia as it really isn’t that big of a deal (in my opinion) and all I was going to do was lay around while they gave me antibiotics. For any of you who know anything about medical stuff my creatinine level was at 15 point something. For those of you who don’t know anything about medical stuff a normal creatinine level for women is between 0.5 to 1.1. If you want to know more I suggest google, because I am not a doctor, and am probably one of the least qualified individuals to give you any kind of medical information.
At this point they know dialysis is necessary. This requires some kind of special IV thing that I know nothing about other than the fact that the needle was way too big to go into any of my arm veins (they already had a horrible time with the regular IV) so they had to put it in my neck which was actually, in my opinion the worst part of this whole thing. Inserting it took like two seconds, and it didn’t hurt, that was’t the issue. The issue is that I was born with a genetic no chin, and a genetic no neck (thanks mom) aka I have a fat face, with a short neck so they had all these things taped partially to my face and partially to my neck, making it hard for me to move my neck.
They took a quick chest X-ray and saw that my lungs were surrounded fluid, which was the cause of my not being able to breathe, at this time they decided the best course of action was to sedate and intubate me so they could begin treatment. I woke up two-ish days later, while I was sedated I got two dialysis treatments, a kidney biopsy, three units of blood, echocardiograms, x-rays.
After I woke up the waiting game began. I had dialysis treatments every other day and they checked my levels to see if I was regaining kidney function. My kidney biopsy came back from the Mayo clinic and showed that 18 out of 20 glomeruli (the part that filters your blood) were clogged, and I had end stage kidney disease, and IgA Nephropathy (again consult webMD or google for more information). Slowly but surely, I regained my strength and I moved from the SICU, to the ICU, to acute care, and finally was released from the hospital on January 20th.
Rather than undergoing treatment by myself in DC, I have returned to my parents house while I receive further treatment. The doctors in the hospital as well as my local nephrologist have given me a variety of options for future treatment, however both agree that transplantation is the best option for me. With a successful transplant, I will go completely back to normal life, there is no special diet, no dialysis ect. My other options are to do peritoneal dialysis (which is at home, again consult google for specifics), for life, or until I get a kidney transplant. This would require me to connect to a machine at night for 8-9 hours a night, however I would live a normal life otherwise, I could maintain a job, eat a less restrictive diet. Lastly, is to do hemodialysis at a center three days a week. This is what I’m doing currently, as peritoneal dialysis requires the surgical placement of a special catheter which takes weeks to heal, and the transplant process takes multiple months as well.
I hope this answered all your questions thank you all for your support, I will continue to update everyone as we have more information.