Good Things to Come

Have you ever have that experience where you feel the Lord is speaking directly to you through someone else? 

I have been so discouraged over the past several months as my body has decided to do anything but cooperate! I have felt so frustrated by it all, and somewhat hopeless that they will ever find a solution to my urological problems. With every advance they make my body seems to take ten steps backwards and I am left with more problems than what I dealt with before. It has been a time of finding myself and and deciding what I am made of.

A little over a month ago, my body developed the first major urinary tract infection since post-surgery.  My doctor quickly prescribed a 10 day regimen of antibiotics and requested I return upon finishing them to give another urine specimen to confirm it was clean. After 10 days of medicine, I still had an infection. They cultured the urine, determined the best antibiotic to kill that particular bacteria, and put me on an addition 10 day regimen of a different antibiotic.

Last Wednesday I returned to give my third urine sample and I am pretty convinced I still have the infection! I should find out what the results of the culture are tomorrow, but since I have completed my last course of medicine I already have begun to see traces of blood in my urine again (sigh).

There are moments when all I want to do is through my hands in the air I declare, "I give up"! I am simply not strong enough, emotionally and physically, to continue fighting this battle. In these moments I have to dig deep to find hope and peace. I often hold on to the sweet words of a co-worker and friend who once gave me the perfect analogy that has carried me through a lot of rough days.

"It is like I am on the last leg of a long race...I am tired and worn out and I don't much feel like continuing on. I am ready to give up, but if I just push through this last little part, my reward will be sweet and my joy will be full." I will be able to declare that although it was a long and hard race, I pushed through, and it was a journey worth finishing.

Tonight, I came across the video posted below. It is of Elder Holland as he recalls his days as a poor young father with a broken down family car. On that challenging day from his past, he wishes he could have told himself the following,

"Don't you quit, you keep walking, you keep trying. There is help and happiness ahead. Some blessing come soon, some come late, and some don't come until heaven. But for those who embrace the gospel of Jesus Christ...they come. It will be alright in the end. Trust God, and believe in good things to come."

Those words couldn't be more perfect and more inspired. They have filled my heart with a much needed peace and comfort. I pray that in your own struggles, these words will find your heart and touch your soul as they have mine. In the profound words of Elder Holland, "Everyone of us has times when we need to know that things will get better." "It will be alright in the end. Trust God, and believe in good things to come."

{Please turn off the music before playing}

*To watch the video in full screen click here.

A Five Day Stay in the Hospital…

Here is an account of my experience in the hospital during my last surgery. It is long and detailed, so if you not interested, please ignore it. I wrote it in detail because I knew I would forget otherwise (especially considering all the meds I was on). During the procedure they reconstructed my left ectopic ureter (ureter-the tube draining urine from the kidney to the bladder) and re-implanted it into my bladder wall. Over the course of my life time it was previously draining urine into my uterus. This obviously creates a myriad of health issues which have finally been resolved. I feel tremendously blessed to have found a doctor who could finally diagnose the problem and to my Heavenly Father for cutting me a break. I am looking forward to a healthier life and for the chance to begin our family by some means undecided by us and the Lord. If you are interested in the details of the most challenging physical, mental, and emotional struggle I have ever faced, please read on….

After 5 days in the hospital, 15 shots, 3 IV's, 3 new incisions, 2 suppositories, 2 catheters, 1 epidural, 1 stent, and lots of medication… I have finally returned home. This experience has been the most challenging physical trial I have ever been through. I went into the surgery prepared for what I knew would be the hardest recovery I would have to face thus far, but nonetheless, I was optimistic! I was optimistic that I was young and healthy and that my recovery would surely be quicker than most. I had no idea just what kind of wake-up call I was in for.

Everything done surgically went just as planned; it was the recovery that would prove differently. Moments before I was taken into the operating room, my doctor strongly recommended that I get an epidural to control my pain during recovery. I am not typically afraid of needles or shots, but I have to admit I was completely beside myself with fear! They gave me a sedative to calm my nerves before giving me the epidural, but I don't think I ever really calmed down until it was done! Dave commented that I wouldn't shut-up and I kept making random comments. The nurse assured him I probably wouldn't remember any of it when I woke up. It wasn't nearly as bad as I think I had made it up to be in my head (the IV's were definitely more painful than the epidural).

My five day hospital stay seemed never ending. My nurses during the day were less than great. The night nurse's seemed to be the most prompt with my care. They came in every few hours to check my blood pressure, pulse, and temperature, so as you might imagine, sleep was seldom and interrupted. Saturday was a difficult day as I couldn't keep anything down. Vomiting is never fun… but vomiting with a large incision in your stomach and 4 tubes hanging from you is horrible. Dave left me for a few hours to go home and take a shower and get some food. During that time they brought me a "wonderfully" prepared hospital meal (no sarcasm intended). It was the first bit of solid food since the operation and I was pretty excited about it. I took it easy but about half way through the meal I started to feel sick. With practically no warning, I threw-up all over my lunch tray. I pressed my nurse call button and informed the nurse's desk I had thrown-up. I figured this would result in someone being sent to help. After waiting for about 10 minutes and trying every attempt possible to not vomit again, I paged the nurse's desk a second time. This time I was in tears and informed them I needed something to throw-up in immediately. After waiting a while they finally came with something for me to throw-up in besides my lunch tray (not that I was planning on eating any more of it anyways). My mom arrived late that evening and dropped by for a quick hello before I fell asleep.

Sunday was the best day I had during my stay in the hospital. Maybe it was because the Lord knew I needed a break since it was the Sabbath. I never threw-up and I was alert and talkative for most of the day. Monday I woke up to more nausea and vomiting and the discouragement that I would not be going home yet. Before the surgery the Doctor said I would have to stay in the hospital for a minimum of three nights but he would judge my stay according to my progress. In the back of my mind, all I heard was three nights, and that is all I had prepared myself for. On the bright side, the doctor ordered my 2^nd (urethra) catheter to be removed, which meant one less tube attached to me! The urethra catheter was very uncomfortable, so its removal brought me a much needed smile.

Tuesday would prove to be my most challenging day. After a very sleepless night, my Doctor came by for a visit at 5:30 in the morning. He informed me that it the end of the time clock with what had become a dear friend, as they would be removing my epidural. The rest of the day was a bit of an awaking as I don't think any of us quit understood how much GOOD the epidural was doing at managing my pain. After its removal, it was very clear how much pain it had been covering up. The pain made me vomit and the vomit created more pain! Most of the pain was resulting from bladder spasms. I was warned prior to my operation that they were very painful and similar to contractions. I was having several problems with my super-pubic catheter draining properly as well. They wheeled me down to radiology to do an x-ray of my abdomen. This was to make sure there were not any twists or kinks in the catheter. The doctor also wanted me to try taking my pain medication by mouth in preparation for my IV removal. It was all I could do to try and keep my pain meds down and the anti-nausea medicine never seemed to help.

Wednesday's early morning doctor's visit was filled with many mixed emotions. I received the exciting news that everything looked as though I would finally be able to return home. He ordered my fluids in my IV to be reduced and removed my JP (incision drain) in preparation for my release. The JP drain is like a suction bulb with a LONG tube attached to the end of it. That tube is inserted into my abdomen to drain fluid from the incision site. The bulb is drained several times a day to measure the amount of fluid the incision is producing. The doctor snipped a few of the stitches around the JP which held it in place. He then proceeded to tell me to take a deep breath...

What took place after that deep breath became a sudden blur of some of the worse sudden pain I have ever experienced in my life. I literally screamed in pain during the removal (I am sure I woke up the entire floor at 6 in morning). The tube felt never ending as he pulled and pulled and pulled. I know this maybe a little graphic, but since this is my way of journaling my experience I will share it. As he pulled I could feel chunks of my flesh coming out with the tube. In that moment, I felt as if my insides were being ripped out and every part of me was ready to call it quits. I laid there in complete tears as he assured me that the removal of my super-pubic catheter would feel nothing like that experience. It wasn't too long after he left that the nausea and vomiting returned. I am sure it was due to the state of shock that I was in after the removal of the JP drain. The rest of the day seemed fairly uneventful until my discharge late that afternoon.

The wheelchair ride to the car and car ride home were both "bumpy", but I survived. Coming home was a huge relief, but also an enormous challenge. I then had to adjust to my "stuff" with my new equipment. I had grown to love the adjustable bed at the hospital (it was really more of a love-hate relationship). It made getting up and down, in and out, much easier. The hospital bed was also equipped with adequate areas to hang my catheter bag (or as I like to call it, my pee bag). At the hospital, I didn't have to worry about getting any "gross stuff" (I will leave that up for interpretation) on my furniture, floor, rugs, ect. I have my post-op appointment next Thursday, and I am really hoping the will remove my super pubic catheter (aka: the "un-super" pubic catheter).

We have been so grateful to everyone who has kept us in their thoughts and prayers. We have appreciated the generous meals and visits. I still have a long way to go, but things seem to be healing. My mom has been a tremendous help and I have especially enjoyed her company. I hope it is all downhill from here…

Sick and Tired...

It's official... I am "sick and tired" of being "sick and tired"!

Last night I went to the Wal-Mart Pharmacy to pick up a prescription for another (sigh) UTI. As I approached the counter, the pharmacist, quickly recognized me and attempted to guess my last name. Thankful, she got it wrong, otherwise I think I would have cried (okay, so that would be a little over dramatic... but you get the point). She did reassure me that one of these days she was going to have it memorized. Just why would there be a need for her to memorize my last name... 'cause I practically live at the place these days!

On Monday I will go in for surgery number two, in less than two months! I am finally working with a urologist who is actively seeking a solution to my problems and not just treating my symptoms. It will be an exploratory type surgery to get a better look at my urinary system. It is his impression that I could potentially have an ectopic left ureter. Your ureter is what carries urine from your kidneys into your bladder (you have two, one on each side). If it is ectopic, it means that it has an insertion point other than the bladder. All of my tests, procedures and symptoms, thus far point to this diagnosis, but as I have come to learn, there is no guarantee this is what they will find.

Of all the uterine abnormalities, a unicornuate uterus is most often seen with some sort of renal (kidney) anomaly as well. For many patients diagnosed with a unicornuate uterus, it is discovered that they only have one kidney or a misshapen kidney. Thankfully, I have both kidneys, but it is sounding like I could have some abnormalities in other parts of that same system. If an ectopic ureter is found, there are two solutions. The first and most appealing, is if my kidney is found to be functioning properly; they can just re-route my ureter. The second scenario, would be if my kidney is found only producing water instead of urine. If this is the case, they would have to remove my left renal system (kidney, ureter) entirely.

I never would have imagined that the health problems I have endured would be so closely related and stem back to one simple diagnosis of a unicornuate uterus. For the majority of my life, they were treated as individual issues/symptoms. It is now clear that it needs to be treated as one whole condition with multiple medical issues stemming from it. I have adjusted to being the science project to many doctors as they observe my rare medical scenario.

I have to admit I am almost hopeful that it is an ectopic ureter. It seems a little strange to hope for such a diagnosis as this, but it would mean an answer and a solution. An answer to so many frustrating and wearing health issue. It would potentially mean no more UTI's or kidney infections. I have imagined the doctor informing me of the diagnosis and there being tears of joy rather than of sadness. Joy that I might not have to live the rest of my life being "sick and tired". Joy that we may soon be able to start IVF treatments, and thus our family, without another odd fighting against us. It seems to be a dream worth dreaming...

Part 2 of My Story

(If you haven't read Part 1, please click here)

Now that I have finished school, the reality that I am not a mother has set in harder than it had previously. When we moved to Arkansas I decided that I was ready to pursue more options and try and find solutions. This past year has been exceptionally hard as I have been faced with more UTI's than in the past and my body hasn't responded the same to the antibiotics as it has before.

Little Rock has a wonderful university medical center that I felt very good about and so I began the process of getting answers. I gathered and requested all of my medical records from the past 13 years of my life so that I would be able to give the doctors a better understanding of my situation. I set up a family care doctor so that I could get referrals to see the doctors at UAMS. At this point, I was finally able to make my appointments. When I did so, I could have never anticipated the wait that would follow. I made appointments with 2 doctors, a urologists and an OB/GYN. The earliest that I would be able to get into either doctor would be over 2 months. A week before my first appointment with the OB/GYN I received a letter in the mail informing me that they had pushed back my appointment for another month and a half. I was so frustrated after waiting so long to find out that I would have to wait even longer. Not to mention the fact that I had been bleeding for over 3 months and I was unsure why. As I explained this situation to the nurse who rescheduled my appointment, she simply said, "well, you have your appointment with the urologist in a few days, see what he says about it". Then to make matters worse, I received a call the day before my urologist appointment to inform me that they would need to move my appointment back one more month. And so the waiting process began again...

When the urologist appointment finally arrived they meant business. It was a long wait to get in to the doctor, but once I was in, he wasted no time in running test, after test, after test to try and get to the root of the problem and to get a clear understanding of my anatomy. He then confirmed, as my childhood urologist had already done, that my urethra was about 1 cm off from where it was suppose to be located. This in turn, directs a small amount of urine into the vaginal cavity and causes a significant amount of urinary tract infections along with a myriad of other issues. He then said that in his 35 years of practicing, he has never seen this situation before and wasn't sure if it would be able to be corrected or not. I then received a referral to see another urologist, as he attempted to comfort me by saying, "if there was a doctor who would have a solution it would be this new doctor". We then went to make the appointment only to be informed that there would be another two month wait to get into see him. This appointment will be December 12th, and I am very hopeful he will be able to repair and correct my urethra.

As for the OB/GYN, I went to that appointment and was again referred to another doctor who specializes in fertility treatment. Luckily this appointment was scheduled just a week and a half following this visit.

My first fertility appointment arrived November 10th, and I could hardly contain my excitement of the possibility that he would have an answer for me as to why I have been unable to get pregnant. Once again he wasted no time in finding a solution, as I underwent a series of tests and blood work. He discovered that I was not ovulating and that is why I had been bleeding for several months. He then ordered and HSG test to determine if there was any blockage in my right fallopian tube (since I only have one) and to get a clear picture of the shape of my uterus. During an HSG test, they shoot dye into you uterus and watch the path of the dye flow out through your fallopian tubes. It is done by taking a consecutive series of x-ray images as the dye is injected. It causes severe cramping for the point of dye injection up to two days later. I had watched a video of a normal HSG test before I went in for the procedure so I would know what to expect.

During the procedure I couldn't see the screen of the X-rays, but once they were done, the doctor sat me up and pulled the screen over to show me the results. The second I saw the images, my heart sank. I knew something wasn't right because my images looked nothing like the normal HSG test I had watched online. I left the hospital that Wednesday with a brief explanation of what the doctor thought might be wrong, but he told me that my fertility doctor would go over the results with me on Thursday. In my heart, I knew the outcome was not what I was hoping for. I spent the rest of Wednesday lying in bed because of pain from the procedure while I looked online for further explanation of what I had seen. There was alot of tears as I read through article after article describing my situation.

Yesterday was the follow up appointment for the test results. Going into the appointment, I had pretty much prepared myself for what the doctor would be telling me. He sat us down in his office and went through everything with us for almost an hour. I was born with a rare uterine abnormality known as a unicornuate uterus. This basically means I have about half the uterus that most women have. My unicornuate uterus has a left horn and a right non-communicating rudimentary horn (as seen in the diagram below, for a picture of a normal uterus please click here).




I have a very healthy right ovary and fallopian tube but there is no communication between them and my uterus. It is suggested that there are several women who have this condition and never experiance any problems from it. It is often diagnosed when a women suffers from repeated miscarriages, pre-term births, or infertiltiy. In my situation it has caused steralization. This is due to the fact that they removed the only fallopian tube that had communication with my uterus because of the damage the tube withstood as child. My uterine malformation was not discovered during my childhood operations because of the initial distortion of the organs from the blood that they held.

The doctor also suspects that I have endometrosis. He has suggested that I undergo a laprasopic surgery to remove my right uterine horn and fallopian tube and the portion still remaining of my left fallopian tube. This will resolve the pain caused from the endometrosis which has built up in my rudimentary horn and decrease the risk of any tubal pregnancies. I am waiting to see if the urologist will be able to operate on me to correct my urethra, and if so, I will have each doctor do their surgeries on the same day.

My options for motherhood are IVF (invitro fertilization), surrogacy, or adoption. If we were to go forward with IVF they would only be able to implant one egg at a time (they usually implant multiple Embryo's). This decreases the chance of the procedure being as affective. They would do this because of the risk involved if all the embryos took and I carried a multiples. Because of my uterine size, carrying just one is like carrying multiples for everyone else. I would be considered a very high risk pregnancy and the chance of miscarriage and preterm births are very high. The babies are usually breeched as well, because there is not enough room for the fetus to turn.

Amongst a lot of sorrow, there is certainly hope, but I have a significant amount of odds to fight. I know that if it is meant to be, the Lord will provide a way. Please keep us in your prayers as we continue are quest to become parents. I can't thank you enough for the immense amount of love and support that you all have shown. I will keep everyone updated as to what we find out over the coming months.