Hello HW Friends: Thought I would post an update on our journey. Thanks for thinking about me DanMan and TC. My hubby has been working out of town for the past few weeks and I was able to join him for awhile. It was good to get away, although not without challenges. Hubby and I went to our University hospital so he could have a cysto fo the bladder due to irritation and burning, plus the continual incontinence. His doctor was out of town so the exam was done by another uro doc-very nice man. Anyway, all looked fine, with some healing still going on apparently. This was at the 6 week point. The good news is that the burning has resolved and we are not sure if it is due to time or the cranberry juice and pills he is taking. When we were at the hospital, they checked the ph of his urine and found it to be on the very high alakine side. High alakine results in high amounts of ammonia, hence the burning. I went to the grocery store that night and bought both cranberry pills and juice and since then no burning! Very excited and happy to have resolved at least one problem. Unfortunately, the incontinence is still as bad. No signs of improvement at the 12 week point thisTuesday. I was interested in the post by Chaso36 on 11/20/07 about stem cell injections for incontinence. I have not been able to find much information but it does look to be promising. It works better in women but still working on using it in men. The reason it does not work in men is due to scarring from the surgery. I wonder then if the treatment is done sooner if there are better results? Most of the research seems to be done in Austria. I would be interested in any other information any one may have on this procedure. Our trip to the hospital was a nightmare but at least ended up safe. We have to take a major interstate highway to the hospital which has posted speeds of 75 miles per hour. Of course that means cars and trucks both go at least 80! I was driving and saw the car in front of me swerve, I soon spotted why, a very large piece of irregular metal in the road right in front of me. Cars were swerving all over the place. I was unable to avoid the item and bang, you guessed it hit it at an angle. Blew the right front tire, the headlights pulled out and the bumper was smashed. Called 911 for assistance becasue we had to pull over to the center median as I was in the center lane and could not get over due to the speed of the other vehicles. Patrolman never came and my hubby ended up changing that tire less than a half foot away from that speeding traffic. Never mind the fact that he leaked all over and had to change most everything. He did not have a change of pants along, wo we tried to "air out" his pants on the rest of the drive. Lucky it was a sunny day and very dry here. Poor guy,he is definitely my hero in so many ways. We made it to his appointment on time but a bit frazzled! Thank God he was not injured in any way when changing that tire. I didn't know whether to cry or throw up! Never saw a patrolman and weren't about to wait for one and miss the doctor appointment.
This week we drove all the way back to the hospital for what we thought was going to be a biofeedback session. Nope,just a consult for biofeedback training. This is something we had to ask for and is not really encouraged at our facility. They have a huge uro department and no one who does biofeedback. So now we are waiting for the referral. At this point we are willing to try anything and just want to make sure my man is doing the kegels correctly. If he clamps down hard he can walk a short distance without leaking, but must be consciously holding it the entire time. I try to stay positive for him but do get down. He was such an active man and now does do his treadmill walks but canot participate in his usual athletic pursuits and hobbies. Very discouraging. I am looking to the future for possible treatments, he is focused on making the kegeling work. I try to support him and pray that will work. His skin is so super sensitive that he can only wear the cup drip collectors, which do not hold much and are very costly. He has had a fungus infection with really bad skin breakdown and does not want to experience that again so is hesitant to go back to the pads. Wtih summer approaching I know it will only be worse with the heat. We keep hoping to see improvement.
Thanks to all of you who have supported and encouraged me during this time. It is so difficult for the spouse as well, but I try to remember it his my hubby who really carries the burden of this disease and if I fall apart I am not helping him. You all are helping me at this time and I can't thank you enough for that support. I do go to counseling, if for nothing else to vent. However, I am finding the friendship and support I receive on this forum to be the best therapy. Wishing you all good health and blessings, Nancy
Husband Age 61
PSA 2.32 1/06
PSA 4.98 9/07
Biopsy 12/07 results in hospitalization for severe sepsis infection
Infection causes congestive heart failure
Biopsy results: Gleason 3+3=6 10% of 1 of 6 cores on left 0 of 6 cores on left
Echo stress test 1/16/08 cleared for surgery- reevaluate congestive HF 7/08
RRP 2/26/08 blood transfusion needed
Adenocarcinoma Gleason 3+3=6 pT2c, NX. MX Clear margins Seminal vesicles no evidence of malignancy
Incontinence-bad -cysto 8 weeks post surgery for burning and incontinence-looks fine
ED-tried Cialsis(no luck) but worried about effect on heart-Now using VED for therapy
12 weeks post op incontinence still bad