Thursday, November 23, 2006

Happy Thanksgiving!

The food was great. We only went to Allen's Moms House. We are now spending time with my family. I am thankful to have Allen and for his Mother to have given birth to him so I would have someone to marry and to have been so good to me. The girl in the photo at the dinner table is my Sister-in-Law.

Tuesday, November 21, 2006

Phantom Urgency and Nerve Damage

For my phantom urgency they did a test run to see if they could find the nerves that were causing the nerve damage. They found the right nevrves so they are now going to do a RadioFrequency Ablation. I am having Radiofrequency Ablation to the nerves that go to my urethral area. A Bilateral Superior Hypogastric Plexus Ablation.
Radiofrequency ablation (RFA) is another way to destroy nerve tissue, but instead of using a destructive medication, it uses a needle. Radiofrequency nerve ablation is the term used when radio waves are generated and used to produce heat. By generating heat around a nerve, the nerves ability to transmit pain is destroyed, thus ablating the nerve. Radiofrequency nerve ablation is the term used when radio waves are generated and used to produce heat. By generating heat around a nerve, the nerves ability to transmit pain is destroyed, thus ablating the nerve. These nerves may re-grow over a period of approximately 6 months or less. When the nerves do regenerate you may not experience the same intensity of pain as prior to the procedure. If you have a recurrence of pain this procedure can be repeated.
I hope it lasts longer than a month.

The nurse today said it may not work at all. Great! She also said that it lasted over a year for someone before. So We shall see????

KEEP GOING KARA! Forward is the only way to go from here! LETS HOPE I CAN SMILE LIKE IN THIS PHOTO FOR A FEW MONTHS at least!

Sunday, November 19, 2006

To view the rest of this journal and the photos. Click on the left hand side of the page at the archive section.

To View Old posts and photos, go to the Archives to the Left of this Page. It's Under Archives and then click on June 2006 , July 2006, August 2006, September of 2006 ,October and now November. There are more photos all the way at the very bottom of the page on the left. You can double click on the photos to get a closer view.

Kara's Bladder Reconstruction Recovery 2006 (7 month mark)

This journal represents just Me, not eveyone will go through the same things that I have. We are all different with respect to bladder removal. This journal represents just ME, not eveyone will go through the same things that I have. We are all different with respect to bladder removal.It's important to remember that this journal reflects my personal journey and is not an indication of exactly what other bladder removal patients will go through. I am only at my 7 month mark out of a 12 month recovery, so some of what I am experiencing will pass with time. Some days are up and some days are down. This is just my own experience. Please don't feel like any of this will happen to you! Even though I am battling phantom urgency and neve damage (that we are currently working on), there are still some fun things that I have been able to do while I have recovered. There are photos on here that show some of the things that I've been able to do for fun. They can be found in the Archive Section of this Journal. YOU CAN STILL HAVE A LIFE DURING RECOVERY! I was able to ride a jet ski for the first time in my life while on Cape Cod, I was able to get into a bathing suit even tough I didn't want to because I never wore a one piece before, I went to the NYS Fair, I went to our yearly Clambake until 4 in the morning, and I also went away and celebrated my 5 year wedding anniversary. All of this was done during this recovery and then some. So it's not ALL bad. I had some fun this summer! And I have no doubt I will have some fun this fall and winter too. This is my place to come and vent both the good and the bad. I don't mean to scare anyone that is having this surgery. I just tell the truth. If some of it may feel frightening to you, please read no further.

Thursday, November 09, 2006


I'm sorry I didn't write sooner, but I was knocked out as you will understand after reading this.I had the spinal anesthetic nerve block at around 3:00 today. It was a really rocky start. I told the nurse that was setting me up that I was resistant to Versed which is the twilight anesthesia. I asked if they could give me some more of it or something different instead. Because of my past history with being awake during major surgery, I really didn’t want to feel the needles and the procedure and I have every right to those feelings. Each person that gets a nerve block gets this conscious sedation and I definitely wanted to have it but they use Versed which does nothing for me, thus I am wide awake for the whole thing. The nurse went to ask the doctor to see if we could work around this. The doctor told the nurse to cancel the whole thing. So then I was really sad because I felt another rejection and begged them to just do the procedure without any conscious sedation. I said I did not care how much it hurt, but that I wanted the chance to see if they could find the right nerves and for the hope that it might work. The nurse went back to the doctor and told him that I wanted the procedure anyway without sedation. Then the Doctor, Himself came out to me and explained that they NEVER use more than 1 vial of Versed which is the sedation. I said ok, just do it then. He said OK but you could tell he didn’t want to touch me. We told the nurse who would be administering the Versed and monitoring my vital signs that I suffered from severe post traumatic stress disorder from Anesthesia Awareness. This was when I was put to sleep with full sedation and an epidural and both failed and I was awake for 9.5 hours of cutting, operating, and sheer torture but could not tell them I was awake because I had my eyes taped shut, a tube in my throat, and they had given me a paralytic, so there was no way to let them know that I was awake and felt and heard it all. Later on I told my Surgeon every thing about what I remembered during the surgery and the conversations that they had in the operating room with each other, he was floored and could not believe it but he did because everything I said was exactly what happened. So this nurse pulled the doctor aside and told him about this. THEN THIS DOCTOR understood why I was so upset about the Sedation and why I wanted it so bad! So the procedure started and they watched my vital signs. I did not respond to one syringe full, so I heard him say, “She also wanted some Zofran too, can someone get some Zofran for her now?” Then I also heard him say another vial of Versed Please. I was so happy that he actually was honoring my wishes that I started calling him “Top Notch Tizo” and “Terrific Tizo” He ate that up real well and told me to keep saying it and that no one had ever called him those names before. I heard him say two more vials of Versed Please! I kept on telling him how Terrific he was. I told him that we were going to get the correct nerves and that this was going to work because he was the MAN! I didn’t feel any of it. At the end, I asked to speak to him after they put me into recovery and I put both of my thumbs up and gave him a huge smile. NO ONE EVER gets 4 vials of Versed for this procedure but I did.
When it was all over he asked me what my pain level was and I said, what pain? I don’t feel anything. The pain is a zero! He was so excited and so was I. BUT this is only a test to see if he got the right nerves it’s not meant to last. The next 48-72 Hours are crucial to let us know if it worked or not. I did not feel any Phantom Urgency. It’s now 8:00 PM 5 hours later and I am doing well. I feel a little tingly down there like when your foot falls asleep but no Phantom Urgency right now. If this works, they will do it again but they will ablate the nerves and that can last 4-6 months. There are also options to cut the nerves if it works really well and this is called Denervation and this is done by a Neurosurgeon. What was done today was called a Bilateral Superior Hypogastric Plexus Block.
Now we just have to wait and see what happens. There is an anesthetic in there that could wear off at any time because we are all different. It may not last the full 72 hours. But waking up with a pain level of zero was extremely important to let us know that he definitely found the right nerves to take away that Phantom Pain in the Urethral area. HE FOUND THE CORRECT NERVES! That means something as to how we proceed, weather it be with this Doctor, or another Doctor.

I am scared but hopeful! I hope that my body will cooperate with this test! I think he was glad at the end of the day that he didn’t give up on me and gave me a chance. Like I’ve been saying to all of these Doctors, “If you don’t give up on me, then I won’t give up on me.”

Thank you for all of your love, support, and prayers, they are all needed at this time as we wait to see what happens. I appreciate each and every one of you more than you know! I don't know what the future will hold but I do know that I have the support of some wonderful people and for that I am so grateful!



Saturday, November 04, 2006

Pictures of My Closest Friend Amy and her Son, Collin

These are photos of my closest friend, Amy, she's like a family member to me. These are Photos of her Wedding Day in 1999. The one with Collin on the pony is current, taken about a month ago. He is 5!