A Year Lost...

I know I haven't posted in a while...I seem to be at a lose for words these days (which is a rare for me), but don't worry, I may make up for my lack of words in this post- Be prepared!

Over the past several days, I have done a great deal of reflection upon this past year. I always send out a yearly update with my Christmas card that reflects upon the events of our lives over the course of that year. They are usually accomplishments we made, adventures we took, or big events that happened. This year I sat in front of the computer, just staring at a blank page with absolutely nothing to say to my friends and family regarding anything that would appear exciting to them. Our accomplishments (if you could call them that) have been much more internal.

This year has been made up of doctor's visits, hospital stays, tests, diagnosis', incisions, needles, pee cups, catheters, medication, and tears. Lots and lot's of tears. Outside of that, we have accomplished very little. In a sense it has consumed our lives, especially mine.

We set out on this journey around September of last year. I was officially sick of being sick, and desperately ready to start a family. I began to gather my medical records from the many escapades to the doctor taken in my youth. I did heavy research on the doctors and hospitals in the area. After years of pushing it to the side, I was hoping I would wake up one day and all of my medical problems would have magically disappeared. But that was simply not the case. I had to face the reality that if I ever wanted to be healthy and start a family I was going to have to be a bit more proactive.

It was not an easy journey and it has seemingly consumed a year of my a life. Six doctors, eight surgeries, nine incisions, ten tests, and countless IV's, shots, and urine specimens.I started this year with a surgery in late January and I am closing it with another major surgery at the beginning of December. I am left spending my December childless, on bed rest with a catheter, and an undecorated Christmas tree (I know that it sounds grim, but there is just no way for me to sugar coat it).

I am typically an optimist, one who hates to be around those who are always complaining about their circumstance rather than making the best of what they have been given. Although, my optimism is a little more dim than in years past, I am well aware that the Lord has been by my side, that he has carried me when I could not stand and that his hand has been in all things. I am unbelievably grateful for the team of doctors that have played such a role in diagnosing and treating my conditions. I am grateful for the technology that exists, making their diagnosis and treatments possible. My heart is so full of thanks to the countless prayers offered on our behalf.

In some ways I feel as though I have lost a year of my life, but I am in hopes that because of this year lost, I will gain many more. I have piles of papers and magazines that have stacked up, thank you cards that have not been written, blog postings that have not been made, pictures that have not been taken, and deep cleaning that has not been done. When I wasn't at the doctors, I was working, and when I wasn't working, I was trying to stay ahead, but I was really just falling behind in life and in sleep. My body feels pretty beaten up and exhausted.

Another Surgery:

In a sense, I am at the end of my rope or in other words running out of options. If this next surgery/doctor isn't able to correct things there really isn't much else that can be done.

In early December we drove to Jackson, MS to see a doctor I had never met before, for I surgery I knew very few details about. We were referred to this doctor by my urologists here in Little Rock who had already earned my full trust. We were told that there was only a handful of doctors in the country that could preform this surgery. We were very fortunate that the best one was only 4.5 hours away in Mississippi.

We arrived Tuesday December 1st for my 1 o'clock appointment. He looked over my records, asked me a few questions, did a vaginal exam, and within about 5 minutes gave me a diagnosis of mild female Hypospadias. Female hypospadias is were the urethra opens into the vagina. It is the third most common birth defect in males (with a misplaced opening on the penis), but is extremely rare in females occurring in about 1 in every 500,000 to 1 million births (pretty good odds right...I will add that to my "specialness" list)! The definition of hypospadias, I was already aware that I had, but after years of doctors, surgeries, and personal research...I finally had a name to attach to the definition! And I received that diagnosis after seeing this doctor for 5 measly minutes...he was good! There is very little information about female hypospadias since it is so rare, but more than likely it was caused by my mullerian anomaly which attributed to my uterine malformation.

I informed him that after years of seeing different urologists when I was younger, I was told that I just needed to deal with it and the problems that it caused because there was noway to correct it. I was at total peace when he responded, "well, I am not going to tell you that here". He then scheduled me for surgery first thing on Wednesday, December 2nd.

The surgery went practically "perfect" and we came out with the most "optimal" scenario. I have a few additional scars to add to my collection. My doctor took a skin graft from the vaginal area to rebuild and elongate my urethra, placing it in the appropriate position. He also did a pelvic sling which required an additional deep skin graft taken from the abdomen, along with a 3.5" incision for the placement of the sling (creating an upside down "T" or anchor-like design on my stomach).

With both of these corrections (along with the previous correction of my left ureter done in April), it will "ideally" eliminate my chronic urinary tract infections (UTI), and mild urinary incontinence (which up until today I have never had the bravery to discuss or admit I suffered from on this blog). It is one of those things, that as a child/teenager you hold very close because of the embarrassment from such a condition. The more I open up and share that detail with others, the more I learn that although my scenerio/cause is much different, I am not alone. Many women are plagued with such a condition after child birth and age.

I spent 4 days in the hospital and returned home from Jackson with a urethral catheter. I have not been allowed to sit for 3 weeks while my catherter is in place. I know that sounds like an easy task but it's not! I travel back to Jackson tomorrow to have my catherter removed and x-rays taken to assure that everything healed properly.

The reconstructive operation is very complex, due to the female anatomy and the lack of females diagnosed with the condition. Their are several potential problems that can arise (all of which can be corrected with minor surgery) if things do not heal properly. But in essence, I am fixed! Well, at least as best as I can be. I have a lot of new and improve plumbing, but I am still missing a few crucial parts to conceive naturally. But because of this, I can hopefully live a more healthy life which in turn will allow me to be a better mother when the opportunity is given to me. That is my year...thanks for all of your prayers and support!

P.S. I hope this all makes sense...I am still somewhat medicated from surgery ; )

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…