When I decided to start this background series I certainly never thought it would be this long! Going through the entirety of everything that has happened in the last 10-15 years, you start to forget all the appointments, procedures, diagnosis, etc… It all just starts to blend together, the more time you spend in waiting rooms, ER’s and hospital beds they all start to look the same. This next series of events is pretty hazy to me but here’s what I know. It was in no way how I wanted to start off as a mother. It was extremely hard, insanely emotional, but as always I push through. Each background segment, I can tell you at the time I didn’t things could get worse, and then something new would happen. If there is anything you learn when being sick, it is that you become a master of disguise, a pro at putting on a face (a topic I will cover sometime after this series).
This next part of my journey as I have said about the other parts was the worst. So maybe I should just start saying that each part sucked! Because at the time of each I thought it was always the worst. Let’s agree that all of it just sucked/sucks. It was the most depressed I have ever been in my life. I didn’t realize it but I was in for a life of pain. Something I couldn’t comprehend at the time. I have always been an epic wimp, especially as a child, and to this day my family still teases me about crying over every little scratch, even though now, I am tougher and could probably handle more pain than all of them combined. Unless you have passed 97 kidney stones you couldn’t comprehend the pain I endure daily. I have become immune to the daily kidney pain. Things just don’t hurt like they used to and if they do, I know something is wrong.
We were in Iowa for this incredibly terrible year. My ex husband was on his internship with the church. For those who didn’t know me back then, or before now, you may be shocked to think I was actually extremely religious at one point in my life. Though not relevant to my story now, or maybe it is, who knows. I was seeing doctors all over the state for treatment of my kidneys, treatment of my PCOS and endometriosis, and treatment of my pain. I was on every pain medication ever prescribed. Nothing worked. If it did, it gave me terrible side effects. My body has never been able to handle strong meds, as they just shut it down, and of course as luck would have it, I developed an allergy to morphine (discovered when I had my C-section, great timing right?). I had few good days and a lot of bad days. I will say the one thing good about an ex husband working for a church is that we had so much help. Mind you we had a baby at the time. It was devastating to me that I could not physically take care of my child on several occasions. I was either in so much pain or knocked out from medications. I was not able to work and was with her all the time which I always am grateful I had this time with her, but what kind of time is that? Me lying on the couch while she played, or watched TV because I couldn’t always interact with her? That was more painful than that of my kidneys. There were a few families from the church that were consistently on call for us to take Bella if needed or to come stay with me and care for both of us. Most of the time they would pick both of us up and care for the both of us. I am forever indebted to these families. I don’t know how I would have survived without their love and care for Bella and I… To make matters worse my ex husbands boss, the head pastor, was unsympathetic to what we were going through. It always baffled me how the church already paid us nothing, we were using WIC to pay for supplies for our daughter(Formula, diapers, etc.), and offered no health insurance for families (this is still the case, if the family has to be included it is the cost of cobra) very christian huh? My parents had to pay COBRA rates for both my daughter and I (close to $1000 per month). If I did not have the family resources to help we would have been on the street, considering we could not only have afforded our own insurance but also due to pre-existing conditions I would not have qualified…but I digress. This pastor fought my ex husband on ever giving him time to help me, to be home, or at the hospital. I remember being alone. A lot. And in a very cold and depressing place. My mother was able to come visit and help out on multiple occasions but she had a job too and only so many vacation days. Other than that I had minimal human interaction. I was sick and lonely and at times felt like a failure of a mother, a wife, and person all together.
One night in particular I had a nervous breakdown – for lack of a better term. Everything just hit me. I had started to pass another stone, and was getting very sick again which told me I had another infection coming, and it was just my breaking point. I couldn’t take it anymore. I was sick and tired of being sick and tired. I cried so hard the next morning I woke up to find red spots all over my face around my eyes. I had not idea what it was so I went to the doctor. He asked me if I had any severe pressure in my head or had done any activity that would cause me to strain, and of course my reply was no. It was what he called petechia. Small pin point spots cause from blood vessels rupturing, from my breakdown and crying to hard. I was done. It was around this time taken to the internet for resources and came across a forum for people with MSK, globally (this was before Facebook became popular). There were very few of us, about 100. I instantly connected with a few people on there. Everyone there had the same exact story. A story I couldn’t settle for. I needed to go back to the mayo clinic, someone there must be able to do something for me so I did not have to endure this pain anymore.
I drove back up for a few days to visit their urologist, pain specialists and geneticist. I will never forget that drive. I was alone as my ex husband was not given the extra time off to come with me. This time I stayed in a patient hotel room which is about 1/4 the size of a standard hotel room. It was the middle of February and -30 degrees Fahrenheit with the windchill. I had to stop for gas at one point once making it into the state of Minnesota. I left my gloves off and as soon as I stepped out of the car, I thought my hands would fall off! haha That is a cold I never want to experience ever again! I hate cold weather with a passion. My hotel was attached via underground tunnel to the entire hospital system and city of Rochester, therefore my entire stay I did not once step outside. So thankful for that!
The doctors told me something when I was there that I would learn to be the norm with most doctors, and completely false, but as per their training this is what was concluded in regards to medullary sponge kidney disease. “MSK does not cause pain in they kidneys and neither do stones, you should only experience pain with infection and with the passing of stones”. My response of course was, “then why am I always in pain?”. Doctors typical response “I don’t know”. Regardless of their answers, they did believe my pain was real. I begged them to figure out someway to help me by pleading that I just wanted to go back to a normal life. “I want to be able to care for my daughter on my own, without being drugged up! I want to be able to get a job! I just want to go back to the way things were before this damn disease!” I told them. “Ok” he said “There is one thing we can try, but it is risky and only has about a 30% success rate and the length of time it will last is unknown”. “I don’t care” I responded “I’ll take it!”. He walked me through the procedure that he called Nephrolithiasis(spelling is probably not accurate here). They would make three incisions by my left kidney, then would physically take my kidney out of my body and cut several nerves to the kidney and clamp them off. This would eliminate (if properly done) any pain signals in and out of the kidney. It could be scheduled quickly, and only required a 1 night stay. So we scheduled it. I believe about 1 month after, my mom would fly up, drive with me there and bring Bella and then we could all stay together and drive back so she could care for me as I recovered. I can’t remember all that well (anyone who has had surgery understands things can get hazy) but I believe my ex husband was able to join us on that trip.
Before I tell of that surgery let me jump back to the initial visit as I mentioned I would be seeing a geneticist. My mother and I had done so much research on genetic conditions with our family history. Only a few family members had previously had some major medical issues that really tied everything together. One of my mothers brothers, died from what we believe is a heart condition caused by the genetic disease, while another one of her brothers has suffered both an aneurysm and disection and several other medical issues linked to me and the genetic mysteries. We had mapped out each member of the family starting with the grandparents, all of her siblings and their children. We created an alphabetical system to identify who had what. Everyone had at least a few factors tied to what we were convinced it was Marfan syndrome. I don’t remember how my mom came across this but it really fit. Other than a few major outward appearance symptoms. Most people with Marfans are extremely tall and have long arms and a concave chest. That was most definitely not me. Several of my moms brothers and their kids, however fit this profile exactly, even her father and her grandfather. We found a picture of her grandfather sitting in a rocking chair and his arms all the way to the ground! He looked like an ape! haha. These are they types of symptoms to look for with geneic conditions which I always found fascinating…these outward appearances. Things like arms being longer than your body, narrow face, crowded teeth, droopy eyes, flat feet, the list goes on and on. Then there are the actual inwardly conditions. Anything from Mitral valve prolapse to IBS could be a clue and link us to the answer. Back to the appointment though (didn’t I warn you I’m a rambler?). The geneticist had a chance to review my family history and my symptoms. She ran a few tests including a skin sample which would indicate potential connective tissue issue. She believed there was definitely some genetic issue in our family, but was not 100% what it could be. She said I definitely seem to have something going on, especially with the retinal issue I had in the past, this doesn’t happen to people at that age, she said. But she could not quite pinpoint what was wrong, “I just don’t have enough definitive evidence for a diagnosis”. “I don’t think it’s Marfans syndrome, but it is connective tissue related, I have no doubt about that…Time will tell us more.” and so it did.
It was time for the surgery. Things had warmed up in Minnesota in that short amount of time and I was very optimistic about the surgery. 30% chance and all, I didn’t just want it to work, I needed it to work. It wasn’t until they were just about to put me under, that I really felt scared for my life and what was to come after this, but I didn’t have much time to continue these thoughts. “Maegan, go ahead and count down for us starting from”… “99, 98, 97…”
Waking up from surgery is always a bizarre experience. You are eager to wake yourself up, and hear what the doctor has to say about how things go, or what they found, or how you did, but you just can’t do it. Even if you did you wouldn’t remember it by the next time you woke up from this groggy in and out experience. It is essential to always have someone there to hear everything the doctor tells you afterwards, because you wouldn’t see him again in most cases until your follow up appointment which is around 2 weeks after and no one wants to wait that long. Always make sure that someone has a notepad and a pen, because even they can get the details wrong! Make them write down word for word what the doctor says. At the same time you are eager to call immediately for pain meds as pain after surgery is the worst at this very moment. It never fails, that first moment waking up after surgery the pain immediately takes your breath away. “Everything went well” he said, “time will tell if it worked”. As i started to snap out of my drug induced state I noticed pain in my left side, but it felt different. Turns out it was strictly incision pain. I noticed immediately that my kidney pain was no where to be found, and then I fell asleep. I would never have another surgery again where the only pain I felt after was the incision site.
The next thing I remember was waking up in the car on our drive back to Iowa. I felt (as i scanned my entire body piece by piece to make sure this was right) nothing. Absolutely nothing. I felt fine, normal even! I looked over and saw my daughter in her car seat smiling at me as if she knew her mom was going to be ok and I started laughing with tears rushing to my eyes. My mom turned back at me and asked “What?!” I told her with the biggest smile on my face and sigh of relief, “I’m not in pain, I don’t feel my kidney anymore!!”. She was ecstatic to hear it was working, we blasted the radio and sang the rest of the way home! Everything was going to be ok.
-Just a Regular Sick Girl
Bella and I in Iowa on a good day. :o)