Okay, first off, I am a female. My name is Devin, and I am 29 years old. I was born 6 weeks early back in 1982 in New Orleans. My mom had diabetes during her pregnancy with me and it resulted in me having multiple birth defects. The doctors determined that all the damage was done in the first trimester, most likely before my mom even knew she was pregnant.
When I was born, I had a brain cyst the size of a quarter. I had three holes in my heart- 2 VSD’s and 1 ASD which caused an enlarged heart and pulmonary stenosis. My urinary system was that of a 9 week old fetus with kidneys that had not descended and turned, and my bladder had an elongated neck. I was also born without a sacrum or coccyx and without half of my 5th lumbar vertebrate which is fused to the 4th lumbar. Consequently, I am missing all the nerves that normally come off the sacrum and vertebrate. I also was born without an anus or rectum. I had no bowel or bladder control and I am paralyzed from the knees below. And finally, I was born with club feet. Whew! Did you get all that??? :)
Since my birth, I had many surgeries to correct as many of the problems that I had, but some of the problems resolved on their own. Again, starting from the top, the brain cyst disappeared on its own with no mental impairment (miracle), and my brain grew normally. The 3 holes in my heart were not supposed to heal without surgery, but then did- all except for one small VSD murmur. The enlarged heart and pulmonary stenosis were gone (another miracle).
At the time I was born, I had no sucking reflex and had to have a gastrostomy so I could be fed tubal feedings. Within 3 months, I developed the sucking reflex and was able to be fed normally.
Without an anus or rectum, the surgeons eventually constructed a rectum for me. I then had club foot surgery so that the feet, even though paralyzed from the knees down, I was able to stand and walk upright. My knees and thighs and hips to the “walking” for me. It did take me nearly 2 years to learn to walk, but I did what I was not supposed to be able to do at all.
When I was 4 years old, the doctors decided that since I had no bladder control, they would bring a uretor to the surface of my abdomen. The surgeons took out part of my intestine and augmented my bladder to twice its size. They made me a non-leaking stoma through which I am able to catherize myself 3-4 times a day. Throughout all of this, I began developing bladder stones due to a chemical imbalance in my blood. With the right medication combinations, I had gone from having many stones to just a few, but it was necessary for me to have them surgically removed- 6 surgeries total.
More than anything else, I suffered from UTI’s fairly often, and I usually had to take strong antibiotics, sometimes 2 or 3, as I strived to overcome those infections.
In 1998, I developed a new problem-I had Hashimoto’s Disease. Half of my thyroid was functioning and the other half was removed surgically. Since that time, I have been on thyroxin therapy and do very well. In 2008, I was diagnosed with hypertension. I am now on medication that controls it.
Whew! That was a lot of information! Congratulations for reading all of it thus far! What you read above is a medical letter that I take to all of my new doctors, my medical history in a nutshell. The most common response I get from nurses and doctors are, "Wow! You are a medical miracle!" and "Man, you've been put through the wringer, haven't you??" Haha....I am what I am. God makes us all special in our own unique ways. I did have one doctor sit down with me one time and stated that if he had to give me a medical diagnosis that resembled all of the conditions that I had...he would say VATER syndrome or VACTERL syndrome. Even then I do not exhibit all of the symptoms..but you only need 3 of the problem characteristics to be considered diagnosed with it. V=vertebrae (I have), A=anal (I have), C=cardiac (I have), and R=renal (I have). I do not have the T=trachea, or E=esophagus, or L=limb conditions. For those in the medical field, you should look it up if you have never heard of it. It is rare and everyone who is diagnosed with it can have vastly different outcomes, from extremely severe to non-life threatening. I happen to be one of the very fortunate ones who can have a pretty normal life, for the most part. :)
Okay, so now you know my history, I will bring you up to date on what I am currently dealing with medical wise. I am still very prone to urinary tract infections. Since I self cath through my stoma, it is a clean procedure and not sterile, so there is always the risk of infection there. Currently I take an antibiotic 3 times a week to help prevent them. My kidneys are small, but they do their job well. I always have to make sure that if I get a UTI it does not progress to a kidney infection. My kidneys also, for some reason, have cysts on them. There are only a few and have not caused any pain or disruption with my kidney function, so the doctors are just watching it for now. I see my urologist every 4 months or so for follow up. I take thyroxin medicine to help my thyroid since half my thyroid was taken out due to Hashimotos disease. Once a year I normally get it checked out. All has been well thus far. Been on the same dose for the last 15 years! I also take blood pressure medicine to control my blood pressure, which has been doing fine thus far. I still have the heart murmur, so I see my cardiologist annually as well. I also take medications to help prevent bladder stones, which have been effective for the last 15 years as well. In total, I have had over 13 surgeries in my life thus far and currently I take eight medications. I am also 13 weeks pregnant now! :) I am seeing a high risk doctor and so far so good! I am allowed to stay on all my medications thus far. My doctors all have said that I am an interesting case to follow so I'm sure to be written up in a medical book somewhere...my urologist is following me closely as well, hoping the baby will not disrupt my augmented bladder as he/she grows. My cardiologist has already ordered an echo to be done on me once I reach 7 months to see if my heart will be strong enough for the stress of child birth or if a c-section will be required. Time will tell! Prayers are much appreciated! I have a comforting feeling knowing that God is taking care of all this...He always has...and always will.
Saturday, July 7, 2012
Welcome to my blog! Time to get to know the real me!
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