Just when I thought it couldn't get any worse...they asked me to learn how to catheterize myself (sounds easy, right?). So I am practicing and developing the new found skill of self-catheterization! To be honest, I am not very good at it, but thankfully I haven't had to use this new method in any "real-life" situations (can you imagine trying to do this in a public restroom). It is bad enough trying to stick a tube in my urethra when my bladder is somewhat empty, I cannot imagine doing it while I am dancing around because I have to go pee, but can't! But with this new ability/skill they agreed to remove my super-pubic catheter (about 2 weeks ago- I am a little delayed in making this post). This seems to be a small gleam of light in what has seemed like a long darkly lite tunnel.
For the most part I am doing pretty good. I have good days and bad days, but thus far I have been able to work through the "bad" days on my own without resorting to self-catheterization. There is always a huge rush of fear when I sit on the toilet and nothing seems to come. There are times when my entire body shakes as I try with all my might just to get a few drops out. I don't think I am seeing the progress that me or my doctor was hoping for, but I suppose time will tell. As for now, I am trying to let my bladder heal from all the trauma it has experienced lately...it is obviously pretty upset about the whole deal.
Since this is typically "stuff" you deal with when you are 80, I am currently trying to make a deal with the Lord that my 80's will be the prime of my life. Sounds fair, right? This path has been longer than I ever could have imagined. But I can honestly say that I have done and experienced things that I never would have thought I would have been strong enough to endure. I am certainly stronger and more capable in certain aspects of my life from this experience. And I hope that in becoming so, I will be blessed with what the Lord knows is my hearts greatest desire...to be mother.
Showing posts with label Catheter. Show all posts
Showing posts with label Catheter. Show all posts
Wednesday, February 24, 2010
Monday, January 4, 2010
Life is Hard
"We must accept finite disappointment, but we must never lose infinite hope" ~ Martin Luther King
Life is hard, if no one has ever informed you of this fact, let me be the first... "life is hard"! Sometimes I feel like a broken record. After each operation, I find myself saying, this should be it...this should correct things. Only to undergo another surgery, and another, and then another...well, you get the point!
I mentioned in my last post that I was scheduled to have my catheter removed and x-rays taken on the 23rd of December. My mom was to take me down to the appointment in Jackson. After which we were to turn right back around, pick up Dave in Little Rock, and head for New Mexico to be with my family for Christmas. Well, that whole plan came to crashing halt...
As I went in for my scheduled x-ray, there were complication. They fill your bladder with iodine through the catheter and watch on the x-ray monitor as your bladder fills to assure there are not any problems. Then that catheter is removed and they ask you to urinate while they take images of your bladder/urethra as you empty. Notice, they didn't tell me to sit on the toilet and urinate...yes, right there on the bed (which does have a split down the middle) they ask you to urinate! Not to mention you have three other people in the room watching as you attempt to this.
After getting over the fact that this was entirely too weird, I gave it my best shot with no success. Then they pulled out all the tricks. They turned on running water trickling in the sink...no luck. They filled a bowl with warm water and stuck my hand it...no luck. They told me I could try it standing up, so I reluctantly took that option...as you might have guessed, no luck! Finally they gave me a big cup of water and told me to go wait in the waiting room for a few minutes and to come back and try. I did just that, but no luck. At this point, I was becoming a little emotionally distraught about the whole situation. They sent my mom and I down to grab lunch and to return and try again.
While I attempted to eat my lunch in devastation and fear, a nurse came down to the cafeteria and asked us to return immediately. As I waited in the room to see my doctor, my bladder was feeling unbearably full and getting worse by the minute. It is the worst feeling when you desperately need to go to the bathroom, but physically can't. It finally reached the point to where I could hardly breath from the pain and begged for the nurse to come and catheterize me again (the fact that I wanted another one of those things put in me should explain the extent of pain). My eyes were filled with tears as I laid on the bed while two nurses ran in to give me relief.
The doctor decided that he needed to go in and look with a scope under anesthesia along with putting in a super-pubic catheter (a catheter that goes in through your abdomen to your bladder). My mom and I started making calls to family to inform them that I would not be able to come home for Christmas. We had to wait six hours for surgery, as I had eaten earlier that day. I was released from the hospital around 4 PM the following day on Christmas Eve.
I was given a plug for my catheter and told to try and pee normally. If I was able to do that by Monday (December 28th), my urologist here could remove my catheter. Monday came and went and I still couldn't pee. I was told to keep trying on my own with the super-pubic till January 6th. We are three days away and I can't get out more than a few drops. I am hoping for a sudden miracle, but trying to be realistic at the same time. If I do not have success in the next few days, I will have to go back to Jackson for another surgery.
Sometimes I am not really sure if I should be laughing or crying about all this (I have done both simultaneously on more than one occasion). I just wish for once that my body would cooperate and take a step forward rather than two steps back. I am going on my fifth week with a catheter, I spent my Christmas season in bed, I can't go pee, and I have officially decided that life is hard! I know that I have learned a great deal from all of these experiences, but I can't wait for this burden to be lifted. I know my time will come...but in tell then, I am learning to be tough. After all, this life is not for the faint in heart!
Tuesday, December 22, 2009
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 ; )
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.
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 ; )
Monday, May 11, 2009
Be Careful What You Wish For
I went for my post-op appointment last Thursday in hopes that he would be removing my catheter. It has been causing me a great deal of discomfort at the site where it was stitched into my abdomen traveling into my bladder wall. It also made doing much of anything very challenging unless I was wearing my leg bag. I hated the leg bag...feeling a warm liquid on your leg and knowing it was your urine...not fun! I also never enjoyed walking around with it on and hearing the liquid slosh around. I spent most of my days with my regular catheter bag, but that meant where ever I went in my house I had to have a place to hook it on. Whether it be the rail of my bed, the leg of the chair, a knob on a cabinet, or simply in my hand...life became a little complicated.
Thursday would be just shy of three weeks, so I was desperately wishing that he would be ready to remove it. Dave left work to come and pick me up for the appointment. In preparation for the appointment, I took my strongest pain killer before leaving the house. If he was going to be removing the catheter I wanted to make sure I was drugged up for the experience! Even though he had reassured me that it wasn't going to feel anything like the removal of my incision drain...I secretly didn't believe him.
He came into the room and agreed that because I had an infection and had been experiencing pain around the site of the catheter that it was time to remove it. I questioned him one more time as to whether or not it would hurt like the drain. He attempted to comfort me saying that it would not. He informed me that he never tells anyone how painful the drains are to remove otherwise no one would ever let him take them out. Those words were very reassuring (sigh) because I was beginning to think that I was just the biggest wuss in the world!
The nurse came in to remove it...snipped out the stitches, and told me to take a deep breath. At this point it was all sounding much like what they said when they removed my drain (if this is not making sense, please refer to Wednesday under "My Five Day Stay In The Hospital"). I took my deep breath, somewhat clinching the bed in expectation of sever pain as the tube was pulled from my abdomen. A slight sting was all I felt...you can imagine my relief! She then informed me that the whole in my abdomen would close up within 24 hours.
The doctor returned and instructed me to empty my bladder "often". We then proceeded to discuss how I was recovering. I BRAGGED at the fact that my stent had not really been bothering me, contrary to what I had heard about the PAIN they can cause. This is the point in which I took a massive bit of "humble pie". He proceeded to inform me that I may experience "more pain" from the stent now that I would be urinating normally.
I walked out of the office feeling like I was on cloud 9 (even though I actually threw up on the drive home and several times when I finally arrived home...but that is beside the point). When I returned home, I went pee for the first time in three weeks...whoohoo! It was a little painful, but I figured that was expected since it had been so long. I was exhausted after the big outing and from getting sick therefore I laid down for a nap. Upon waking up my whole world had suddenly changed.
I went to the bathroom again, and again, and again...each time it became more and more excruciatingly painful. I would sit on the toilet shaking in pain as my eyes would water up. I suddenly was very much AWARE of my stent! For three weeks, I had wanted nothing more than for my catheter to be removed and now I could think of nothing I wanted GREATER than to have it back in! And so the saying goes, "be careful what you wish for".
During the day I have to go to the bathroom about every 30 minutes to an hour and at night I have to set my alarm to wake me up every few hours to get up and go to the bathroom. Each time I go, the pain is agonizing, and nothing seems to take the edge off. I have two more weeks with the stent in before it is removed. I have been very humbled by this whole experience. It is ever so clear that now matter how bad something is...there is always something worse.
Thursday would be just shy of three weeks, so I was desperately wishing that he would be ready to remove it. Dave left work to come and pick me up for the appointment. In preparation for the appointment, I took my strongest pain killer before leaving the house. If he was going to be removing the catheter I wanted to make sure I was drugged up for the experience! Even though he had reassured me that it wasn't going to feel anything like the removal of my incision drain...I secretly didn't believe him.
He came into the room and agreed that because I had an infection and had been experiencing pain around the site of the catheter that it was time to remove it. I questioned him one more time as to whether or not it would hurt like the drain. He attempted to comfort me saying that it would not. He informed me that he never tells anyone how painful the drains are to remove otherwise no one would ever let him take them out. Those words were very reassuring (sigh) because I was beginning to think that I was just the biggest wuss in the world!
The nurse came in to remove it...snipped out the stitches, and told me to take a deep breath. At this point it was all sounding much like what they said when they removed my drain (if this is not making sense, please refer to Wednesday under "My Five Day Stay In The Hospital"). I took my deep breath, somewhat clinching the bed in expectation of sever pain as the tube was pulled from my abdomen. A slight sting was all I felt...you can imagine my relief! She then informed me that the whole in my abdomen would close up within 24 hours.
The doctor returned and instructed me to empty my bladder "often". We then proceeded to discuss how I was recovering. I BRAGGED at the fact that my stent had not really been bothering me, contrary to what I had heard about the PAIN they can cause. This is the point in which I took a massive bit of "humble pie". He proceeded to inform me that I may experience "more pain" from the stent now that I would be urinating normally.
I walked out of the office feeling like I was on cloud 9 (even though I actually threw up on the drive home and several times when I finally arrived home...but that is beside the point). When I returned home, I went pee for the first time in three weeks...whoohoo! It was a little painful, but I figured that was expected since it had been so long. I was exhausted after the big outing and from getting sick therefore I laid down for a nap. Upon waking up my whole world had suddenly changed.
I went to the bathroom again, and again, and again...each time it became more and more excruciatingly painful. I would sit on the toilet shaking in pain as my eyes would water up. I suddenly was very much AWARE of my stent! For three weeks, I had wanted nothing more than for my catheter to be removed and now I could think of nothing I wanted GREATER than to have it back in! And so the saying goes, "be careful what you wish for".
During the day I have to go to the bathroom about every 30 minutes to an hour and at night I have to set my alarm to wake me up every few hours to get up and go to the bathroom. Each time I go, the pain is agonizing, and nothing seems to take the edge off. I have two more weeks with the stent in before it is removed. I have been very humbled by this whole experience. It is ever so clear that now matter how bad something is...there is always something worse.
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