Hi, I'm Sara Walker, my sister Jess Solt said I should share my story with you....
Right now my story is that I'm exhausted, weak and burning up with fever. I have a horrible kidney infection (hydronephrosis and pyelonephritis). I was in the ER 3 weeks ago for kidney stones and was told I had a uti, hydro and pyelo (all which I have had consistently for years). I took antibiotics for 10 days and felt fine. Then 7 days ago I got a high fever, body aches and extreme chills that have yet to go away. Although I don't currently have any "kidney symptoms" I knew it was most likely a kidney infection. I went to the dr and he said I had a horrible infection and gave me more antibiotics and wants me back in 10 days to see if we can at least get rid of the infection so I can function. He also told me (I knew he would) that with the infection plus the hydro, pyelo, stones and other defects I absolutely could not put off seeing my urologist and having the recommended operations ASAP. I totally agree..my quality of life is going down, down, down, but the problem is money. I will never have enough money to "fix" myself. Its not just operation and hospital costs, there's dr's office visits, labs, tests, hospitals and the fact that I would have to miss work for an extended amount of time. I already owe many dr's, hospitals and labs so much that they won't see me until I start shelling out money. I could easily have the operations and file medical bankruptcy (I already have 10s of thousands of medical bills that I owe), but missing work that long is just not an option. We are a 2 income family and we need every penny of both our incomes to survive. I know that without these operations, dr visits and test I will most likely die, and I absolutely don't want that..not now, not with a young daughter and so much more I want to do. But I feel pretty hopeless and helpless at this point, there is no one out there that is just going to pay my bills and fix me. I will just have to continue getting by on ER visits, antibiotics and dealing with it....until I win the lottery (too bad I can't afford to play lol).
I'll give you some background, but as I said I'm pretty sick right now...I have a fever of 102.6 so my brain may be a little fuzzy on details, dates and procedure names...
As a child/teenager I was always having UTIs, side pain (especially when running or doing other physical activity). I saw the dr many times, but was just given an antibiotic and told I was out of shape and needed to lose weight (that's why I always was in pain). No one ever "looked inside" to see what was really the cause, I really wish just one person would have, my life would probably be a lot better now.
When I was 18 (2001) and on my own, while at work I got very sick and was in so much pain I thought for sure I would die. I went to the small town ER when I got home...UTI they said, antibiotics they gave and after several days with nothing to eat and barely moving from my bed I felt OK. A few months later (we had moved to Kansas City by this point) while at work I again had tremendous pain and almost passed out. A security guard said he thought it was kidney stones and said I had to go to the ER and have CAT scan. So to the ER I went and kidney stones I had..lots of them. After months of dr's office visits, tests and medicine, my urologist scheduled me for a lithotripsy. It was successful, I guess. I went for awhile with no pain and thought I was ok. But then it happened again. The same urologist ordered more tests, more procedures, more scans and after I was admitted to the hospital (in severe pain from stones) I was told that there was something "not right" with my kidneys. My left kidney just isn't formed right (i'm sure there is a proper medical term, but I don't know it), my left ureter is small and narrow and doesn't do an effective job and my right kidney isn't so great either. But by this point I already owed said urologist a lot of money and he didn't suggest I do anything about it.."too expensive and you've gone this long not even knowing, I'm sure you'll be ok".
Over the next several years I saw several urologists and was in the hospital several times for kidney stones. I had lithotripsy several more times and always felt OK afterwards, but not for long. Going to the ER was no longer a rare occurrence, it was a sure thing at least once every 6 months (I would always wait until I just couldn't wait any longer...who wants to go to the hospital? who wants to ruin someone's day by making them take me? who wants to miss work/holidays/plans?) Sometimes I was stented and kept in the hospital for a few days then sent home so I could either have lithotripsy again or just wait it out in hopes that stones passed. Sometimes they would just pump me up with fluids and pain meds and I was sent home. I could deal with it and after a while I just got used to always having pain in my sides. During these years of dr's visits and lithotripsies no one ever mentioned the actual state of my kidneys or their function (or lack there of so it turns out). It was always just the same thing over and over. Medicine, stents, lithotripsy, ER visits, tests, dr's visits....BILLS BILLLS BILLS. I had used up a whole years worth of FMLA in just a few months, but I just couldn't work in severe pain and discomfort. I was able at one point to pay off a small chunk of my bills and stay healthy for about 9 months.
In 2006 I had gone through the same lithotripsy, stent, scans routine 2 times consecutively...and then I got pregnant. Luckily for me and my baby my kidneys held up...almost all the way through. I saw my urologist when my monthly/weekly urinalysis kept coming back with infection (ecoli, white blood cells) he sent me for more scans..hydronephrosis was the verdict and I was scheduled for surgery. The day I was supposed to have the operation the urologist (from the same group, just not one I had personally seen before), was first told it was the right side, when I had been told left...because of the confusion, the fact I was pregnant and the fact that to him it wasn't that bad (no worse to him than in other pregnant women) he called off the surgery. I went on to have my baby and had a pretty uneventful few months. I had some pain, but was used to it so I dealt with it. As a stay at home mom, I had no insurance so I just put up a good front and tried to be strong when I felt the familiar kidney pain. By November 2007, Thanksgiving day to be exact I was so sick that I thought I actually might die right there on the couch. I finally gave in and went to the ER, kidney stones, infection, pneumonia and phlebitis. I spent a week in the hospital mostly sleeping and was pretty sure I'd die. Because I was so unhappy with the urologist group that had just kept lithotripsying me I told the hospital the name of my first urologist instead...I mean at least he did see that there were things not right in there. I got a stent and after a few more weeks I went to his office to have it removed and see what the next step was. Before I even saw the dr I was told I had to pay a $300 balance from years ago...I didn't have the money, but they didn't care. No money, no dr. I cried, I begged, and cried more until the dr finally agreed he'd at least remove the stent. He did and then he sent me away..no more help from him until I had insurance and cash.
For the next few years I just dealt with the pain, went to the ER when it got real bad (mainly so I could get pills, so I could avoid having to go back). I taught myself some breathing techniques, used a heating pad, drank lots of water, slept with all kinds of pillows to ease my pain and rationed out the pain pills I had collected after all my ER visits and surgeries. I managed. I managed until July 2009 I HAD to go to the ER...I was severely dehydrated, sicker than ever and in horrible pain, I couldn't take care of myself or my daughter I had to get help. Because I owed so much money and had no insurance I went to the hospital down town that I was told worked with people if they couldn't pay. I was admitted, got a stent and sent home 2 days later. When I returned for my follow up visit they wanted to know how I'd be paying....well I was hoping to get some assistance. I filled out forms and saw the dr, who apparently had been told of my financial situation. He didn't want to touch me...I might not be able to pay him if he actually did something. So I was sent home..stent still in. I tried and tried to get the info I needed to the right people, but no one wanted to help me and the hospital just wanted their money, they didn't like that I had a boyfriend that had a job..in their eyes he should just pay my bill (they didn't seem interested in the fact that he was the only one working and it took every bit of his check to cover rent, bills, food, clothes, diapers etc). So after a while I just gave up. I had a stent in and lived with it.
In 2010 I went to school and started a new job thankfully my kidneys didn't bother me too much (I still had the constant aches in my side, but by this time I was so used to it I barely noticed). By the end of 2010 beginning of 2011 though I was really feeling rough. I had no energy and was always hurting bad. I hadn't been at my job long though so I just put on a brave face. I would come in racked with fever and pain everyday, I had the nurses giving me as much Tylenol and ibuprofen as I could get. I was calling in more and more and was scared I'd lose my job, my boss actually called me to see if I was working somewhere else instead. A few days later I was in the ER...kidney stones, lots of them, everywhere. I cried to my boss because I was scared, scared I'd be fired for missing so much work and being so useless when I was there. I was told not to worry, they wouldn't fire me and to just get help. I found a nurse that had had lots of kidney problems herself and she recommended a urologist. He was a popular guy so it took me some time to get in, but I was hopeful he would be what I needed. Around this same time I was having some vision problems, I would see spots or things floating in front of me and when I bent down I would go completely blind..everything was black. I assumed I just needed new glasses, it had been a while. My vision got worse, my kidney pain got worse and I was a mess. I had never been so scared. Once I finally got in to the urologist I told him everything...failed stents, lithotripsies, hospitalizations, ER visits, what all the other urologists had said, supposed birth defects..everything. I ended with the kicker..I had an almost 2 year old stent in me. He was appalled...he'd never heard of someone having so many problems and couldn't believe I'd had a stent for that long. He was sure it had probably crystalized and grown to me. He had me do some scans in his office and then we sat down to talk about options. I told him flat out I wouldn't do lithotripsy or "try a few things to see what happened" I wanted to be cut open and have the stones taken out..bottom line! He actually agreed. He set up a percutaneous stone and stent removal for 3 weeks later. I was ecstatic, I thought this would finally be the end of my problems. During the 3 wks before surgery I had several tests run (all of them saying that my kidneys were just no good) and I also visited the eye dr. The dr I saw looked at me with that "something is very very wrong" look. He saw something not right with my eyes and told me I should see a neuro-opthamologist in their group. Freaked out I googled what he said was wrong (enlarged optic nerves), of course I was sure I'd die...MS, Cancer, tumors it was all bad news. A week before my kidney surgery I saw the neuro-opthamologist, he diagnosed me with pseudo tumor cerebri and scheduled me for a spinal tap 6 wks after my surgery and he wanted me to start taking medicine 5 times a day forever to try and help. By this time I was almost totally blind, I couldn't drive, I couldn't watch TV everything was a blurry blob and I couldn't even focus on people's faces anymore. I still worked though, I told my boss what all was wrong and she just said "oh that's too bad" and went on. So I relied on my coworker who did most of my work for me. He would have me only do tasks that didn't require much effort and would help me get up and down the halls, often guiding me like I was blind.
March was almost over and it was finally time for my operation. I was ready to get it over with. I went in and was prepped....during this time I was already a little loopy from meds, but I was sure to tell my urologist about the PTC (he had been on vacation so this was my first opportunity) he wasn't happy with me, but we got started anyways. After the first procedure (the placing of the tube into my back that would be used to do the operation) my dr talked to me, I was highly sedated and only remember bits and pieces. I heard low to no renal function, dialysis, very sick...then I was completely out and on my way to the next procedure. After it was all over I was sore and didn't feel great, but I was excited that it was over and successful! After a few days I went to get my tube removed (it had been doing the work of my kidney since surgery) then I was told I could go home that next morning. I went down for the tests and removal...again pretty sedated I heard the concern in the nurses voices. My kidney just wasn't functioning, if they took the tube out there would be no functioning kidney in the left side. I was sent back upstairs and they tried again the next day and the next day. Finally they said I had to go..they'd unhook the drainage bag and leave the tube in and I'd come back in a week to see if my function had increased. I was beyond nervous..how was I supposed to do anything with a fat tube hanging out of me, I couldn't even wear pants, and it leaked...I felt like a freak. I went home and slept upright on doggie pee pads so I didn't leak on the furniture, I did as little as possible (not that there was much I could do with no pants and a tube hanging out of me anyways) and just begged God to let my kidney work again. When I went in for my follow up they were able to remove the tube, the nurses were all still very concerned about the function and warned me to never drink alcohol again..."you'll die for sure" they said. I immediately went to my urologist and he inspected the incision and talked about what was next. It was decided that I'd just keep changing the dressings myself and come back in 3 wks. When I came back he was impressed with my healing, but said he would need me to see another dr in his practice, one that specialized in the issues I had..not good. I made an appointment though. I went home and recovered well from the surgery I had a funny scar, but felt great! I thought I'd finally be ok. I had the spinal tap (a botched one that led to severe illness, 2 blood patches, 2 more weeks off from work and a fear of neurologists), was on my meds for my brain (my vision improved greatly, very quickly) and feeling good! Of course though it didn't last long, one month later I was back in the ER. Kidney stones, hydro, pyelo...AGAIN. They sent me home with meds and it was almost time for my appointment with the new urologist anyways. He said I absolutely needed an operation...my kidney function was just no good. I went for more tests that confirmed my left kidney was pretty useless and my poor right kidney had been doing all the work for so long it too was shot and that ureter on the left was a sad little thing, barely big enough for urine to pass let alone stones. I saw the dr again and he said we needed to schedule surgery or 3 (reconstruction or possibly removal of my left, reconstruction and mending of my right and something had to be done with that pesky ureter as well)...but I had just missed 8 wks of work and had tons of new medical bills I couldn't pay. I told him I couldn't do it. He said I must, but he understood and told me to come back in 6 months to schedule it....I haven't seen him since.
For the last 2 years I've done pretty well. I lost 30 lbs and my PTC is considered in remission (no more pills!) Only 5 ER visits and everytime, once they got me hydrated and some meds I was ok and didn't have the pain anymore. Then3 wks ago at my ER visit the dr actually showed great concern about the pyelo and hrdyo...she said I must follow up with my urologist soon. Easier said than done...
And that leads to where I am now. Day 7 of a high fever, body aches, chills, nausea and just starting today (probably because of the dr poking around) side pain on both sides. This is a new doctor and he's totally different from anyone I've seen before. He is very concerned, but is determined to at least get rid of my infection and get me to the urologist.
I'm scared. I know I already owe this urologist, the lab and the hospital they use tons of money. How can I see them if I can't pay them for the old stuff. This is my conflict. I can't get anything done until I pay, but I fear I will die from what is making me sick now before I ever get enough money. If I do make it and get the operations how will I pay my bills? Will we lose our house? Will we ever financially recover?
It's just so hard...
I don't know who you are or why you wanted to know my story, but you have it (and I know its a long one) so hopefully something good will come from this.
Thanks
Sara Walker
