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Update- Once again Its always something
As most of you know I have been dealing with a blocked ureter and with having only one kidney this is a real problem. I had planned to post before this but at one am Monday morning I started putting out cranberry juice instead of urine. So it was back to Boston and a check of my temporary plumbing job. Interventional Radiation took a look and decided that it could be because of trauma from them putting a tube into the kidney twice in less than a week or it could be a situation they will have to repair before removing the tube. The bleeding has become sporadic so I am in no real danger so it is a wait and see. The other issue is the stent is already clogged going into my diversion and they were not able to get it unclogged so it is the neph tube and leg bag until surgery.
The first consultation I had told me the best chance I had of keeping the kidney healthy long term was to convert to an iliot conduit. What really bothered me about this solution is they could not give me any reassurance it would help me in not having the ureter scar and block again even though it would solve the problem for the moment. Then it was looking into laser repair of the ureter. What I found out is that it should not be used on an irradiated ureter. It seems that the process can reduce amount of blood flow and that is the cause of the scaring to start with. Then a funny thing happened all the research lead me in a way back home. It seems that the surgeon Gary Steinberg of the U of Chicago that did my original Radical Cystectomy has published a lot on the management of ureter blockage due to prior pelvic radiation following Radical Cystectomy. He is going to attempt an open repair of the ureter on March 4th and if all goes well I will only be in Chicago for about two weeks. If it does not go well I will be there longer and will come home with an iliot conduit. It will be interesting going to sleep one more time not knowing what I will wake up to deal with but it is a chance to avoid what would amount to as another Radical Cystectomy. Please understand I will do what I have to but I have already given birth to that baby once and it would seem rather unfair to have to go through labor twice for the same child so to speak.
The bottom line to whatever solution I had chosen with this is a good lesson to any of us dealing with ureter blockage. The only chance to success once open or repaired will be a solid surveillance protocol. The plan is that once I am through this my team at Ma General in Boston will team up with a really good kidney guy and take a look at what is a complicated situation due to my reduced kidney function and find a way to detect any problems faster.
If I was an ungrateful woman I would complain that the road to a fix couldn’t have lead to a place that was warmer in the winter than Chicago but it goes to show you can’t have everything. I will keep you updated and thanks again for all your caring and support.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society26 Replies-
To Cynthia….. Now take your time and have a good recovery. Be a little selfish. it’s OK. Thanks for the update. We are glad to have you out.
To Bruce…. if you aren’t a little scared, you would be very scary to us! It is OK to be scared. Just don’t let it cloud your mind. My wife remembers watching my heart monitor go from 64 to 108 just as the anestheisiologist came and said in a very clipped Russian accent, “I am going to take care of you!”
Somehow I saw this in a Terminator movie. An we know what happened in those movies!
Good luck my friend, you have done the prep……. Now go get cured!George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Bruce,
Of course you are scared you are human and would be a
fool to say oh well I have nothing better to do but have major surgery!I am doing well had the stint out last Friday and got home to Ma. on Monday.
Dr. G is a top surgeon and I have a great deal of trust in him. I must have as he has done three surgeries on me. Once surgery if over you will see more of his staff than of him but know he is there if you need him and that he knows what is going on. One of his guys by the name of Dr. Large is either a fellow of chief resident now he is wonderful I hope you get to work with him. If you do tell him I said hi.
I wish you luck and remember………..walk walk walk!!!
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Best of luck on your upcoming surgery Bruce!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I hope all went well for Cynthia. Just yesterday I scheduled my surgery at the Univ.Of Chicago with Dr. Steinberg. I am scared, but I feel I made the right choice of the doctor and hospital.
Bruce
You are both in my thoughts and prayers!
Bobbi
Hello Everyone!
Cynthia was released from the hospital this morning and is now resting in our temporary home here in Chicago.
Stay tuned for further updates!
Thank you.
Ed K.
Edward J. Kinsella
American Bladder Cancer Society
Board of Directors – Treasurer/Secretary& Caregiver
So glad that Cynthia’s surgery went well and she is up and around. Hopefully she will be able to go home real soon. My thoughts and prayers are with both of you.
Barbara
Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
So thankful that her surgery went well and I hope she can have a recovery that is swift and with no more complications.
Vi
Dx 10/5 Non Invasive Papillary
So good to hear the news of a surgery without complication. Sending best wishes for a good recovery.
Blessings…Jean
Thank you for the update, EddieK. That made me SMILE!!
Anita :)
Anita
Forum Moderator
Caregiver
Hello Everyone:
Here’s an update on Cynthia’s progress. See started a liquid diet this morning. She’s been up walking and is doing well. Her doctors visited her this morning and are happy with her progress. She may be able to leave the hospital either tomorrow or Monday.
Thanks for all of the thoughts, support and prayers.
Ed K.
Edward J. Kinsella
American Bladder Cancer Society
Board of Directors – Treasurer/Secretary& Caregiver
Glad to hear surgery went well. You both are in my thoughts.
Char
Please give her our best and tell her we are hoping for a fast recovery and long term success!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Glad that Cynthia’s surgery went well today. You are both in my prayers.
Anita
Forum Moderator
Caregiver
Hello Everyone!
Cyndi’s surgery lasted about 3 1/2 hours. I spoke with her surgeon following the procedure and he indicated that everything went well. She was in recovery for a couple of hours and then moved to a room. She’s resting at the moment and is expected to be in the hospital for the next several days.
Thanks to everyone for their thoughts, support, and prayers.
Ed K.
Edward J. Kinsella
American Bladder Cancer Society
Board of Directors – Treasurer/Secretary& Caregiver
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