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Through Matt's eyes...... Many of you know the past eight months of my life have been a struggle while dealing with several large kidney stones. It all started with a little blood in my urine, which I knew, was a bad sign and I had already had a stone blasted less than two years ago. It seems now that all the stones I have were there when I had the first stone blasted, but the urologist I was seeing failed to tell me I had several more large stones, on didn’t see them. To our surprise when we thought we were finished with this situation two years ago, we were only at the beginning of this “rock band” journey.
When the blood appeared again, I was living and working outside of Atlanta, with hopes of Kate and Serena joining me when the house was ready to sell. Being in Atlanta offered a lot of relief because I knew I’d have good doctors around. Kate, Serena, and I were on a better insurance plan than the last round of issues, which also gave us comfort in thinking we’d be able to get to the bottom of everything easily and quickly.
The first couple months of this started with bouncing around between my general doctor and different urologists. Unfortunately, my first round of issues circled around BCBS of GA verses Piedmont Hospital group. Even though I was calling to double and triple check with the office to make sure my appointment was set and they took my insurance, I would show up to appointments and be told that they no longer take it. Even being a difference of 2 business days. This caused so much vexation.
Finally, I was in and with a good urologist, Dr. Stark. He diagnosed me with five stones all ranging from a grain of sand to 12mm. Since diagnosis I’ve managed to pass the two smallest stones and the last 3 are 7mm, 9mm & 12mm and are too large to pass. He also confirmed something we already knew, that I have a condition called horseshoe kidneys.
Horseshoe kidneys are fairly common. This means they never descended while I was in the womb that leaves them upside-down and connected at the bottom and they are sitting lower in my torso than a normal set. Their placement and angle cause the flow of urine to be obstructed in areas, unable to reach the ureter tube to release into the Bladder. With this a collection of minerals begin to build up to form calcium oxalate stones. Dr. Stark, was thinking he’d be able to operate on me at that time, but wanted to review my scans further and told me he’d be in touch within the week.
It was around this time that my employer ‘suggested’ that I take some time off to get this issue taken care of because I’d been in and out of work to be in the ER, appointments, and he could see I was in a lot of pain all the time. This was a huge wrench because I had not been employed long enough to receive any unemployment or other programs to help us during this time, not to mention the mountain of bills that had started piling up. The upside, I was headed back to my amazing little girl every day.
After being home for about a week. I hadn’t heard from the doctor and we grew increasingly worried. I started calling the office every day and was told he’d be in touch, but it wasn’t another week before I heard anything. Dr. Stark apologized for the wait and explained he had consulted with some other urologists in the area to get other opinions. He had to wait to hear back because they all were uneasy about his scans and thought they were noticing another potential issue - a duplicated system. From there it was back to Atlanta for more in-depth scans, and thankfully they were so cautious, because they were right.
So what’s a duplicated system? There are actually two ureter tubes coming out of my kidney that connect down to my bladder. Because of the horseshoe kidneys, these two uterers come out the top of the kidney henceforth providing an inaccurate draining system.
Fun facts: Horseshoe kidneys are common in around 1 in 500 people walking among us today. Duplicated ureter is the most common renal abnormality found in 1% of population. We’re yet to find a statistic that accounts for both of these abnormalities happening at the same time, but were quickly told that operating with standard procedures was too high of a risk in a case like this. The procedure needed is a laparoscopic surgery, with multiple punctures and is fairly new for Kidney stone relief. Luckily, Dr. Stark had recently gone to a conference where he saw a Harvard doctor, now employed at Emory in Atlanta, speak about this very procedure. Thankfully, he was able to refer me.
Of course, this doctor, Dr. Lay is not in our insurance plan. We spent another month battling with my insurance company to get an out-of-network approval so I could see him, but was denied several times after jumping through all the hoops they threw at me. Every time telling me, “We cannot approve this request because there are other Urologists in your network. We cannot say they will be able to meet your needs, but there are other Urologists in your network.” They sent me several lists based on different zip codes and I began to call every urologist on them. Half were pediatric urologists; the rest did not perform laparoscopic surgeries on kidneys.
After all of this time wasted, we bit the bullet and made the appointment with the specialist, paying out-of-pocket, having to borrow money in order to do so hoping to get answers from this surgeon directly. How relieved were we when Dr. Lay not only told us that he is completely confident performing the surgery on him, but that he would also work with our insurance company to have the appeal go through saying he is the only one that should be operating on him. He walked us through my body scans and explained the procedure, which is as follows.
An incision is made in his back near where the kidney lies. The two large stones are very visible in the scans at the very top of his kidneys. He will make one puncture into the top of the kidney near the stones. From there he locates the stones, breaks the stones and essentially vacuum out all of the pieces. The third stone, which is at the very bottom of the kidney, is hidden. He would then have to move his instrument to the lower part of the kidney making a second puncture near the bottom and require him to search for it. Once found, he would use the same removal procedure.
The risks faced here were also explained to us, the obvious being blood transfusions. Dr. Lay explained that the kidney bleeds a lot in surgery. Because normal laparoscopic kidney surgery requires only one puncture wound but in my case two are needed, I’m higher risk for a lot of bleeding. The second risk, the scarier one, is fluid in the right lung. The two large stones are only a few millimeters away from the bottom of my right lung. My right lung hangs lower than my left so there is an overlap therefore butting up right against the kidney.
Even hearing the risks, we had nothing but hopes and relief, as we were able to schedule a surgery. Even better, it was not far off, July 9th. I had a scheduled pre-op appointment exactly a week before to start antibiotics. Kevin and Lauren, my sib-in-laws, had graciously agreed to take us in during recovery so to be close the Emory and my in-laws had agreed to take Serena until everything was over so Kate can keep working and play nurse to me.
Upon arriving at my pre-op appointment, I received another set of bad news. I was told that the appeal with the insurance company did not go through again, and was handed a bill for over $25,000 being told that I had to pay in full in order to have my pre-op and keep the surgery. It was even more disappointing hearing that if I was not insured I’d be able to keep it and they could start an application for a payment plan, but was also told there are no guarantees. This moment, only described as a nightmare, took us right back to square one. No surgery.
This whole situation has truly been nothing but stressful torment. Not only for myself, but for our entire family. My wife has proven to be the best friend a person can have. I would not be where I am if it wasn’t for her support and encouragement, as well as from others. Both my parents and in-laws have been supportive, not only brainstorming other ways to get this done by networking with people they know, but also providing funds along the way when we’ve been in bind. I’m back looking for part time work in attempts to keep us going, but am experiencing pain every day, especially in the morning or after I do any physical activity, even walking for longer than 20 minutes or so.
I'm pleased to say Matt is home and recovering! He has a drainage tube coming out of his back for the next two weeks, and couple of follow-up appointments, but we're on our way to having all of this in the rearview mirror. His CT scan showed that all stones are GONE!! Yay!
Recovery consists of him having the tube for two weeks and having it removed. No working or lifting for 3 weeks (so Kate's on Serena lifting duties :) ) and no driving when on pain meds.
Thanks for all the love, support, texts, calls, etc from all of you! We love you right back!