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OK – ready to travel for surgery
I followed up on Pats suggestion regarding how many neo-bladder reconstructions are done at our local facility and am now almost decided on going in the direction of changing our medical group to a San Francisco one and starting the whole referral process with a new PCP all over again. This will lose some time but might be better in the end. So – for those who did travel for their surgery – can you share with me what to expect? If I allow 12 days for the surgery and hospitalization – is it best to get a apartment or hotel for 3-4 weeks? Is the patient usually discharged with a catheter? Is the first follow up appointment within days of hospital discharge and therefore better to stay in the city of surgery facility? If his PET scan was clear last month do I have a month to get this all arranged or am I in danger of jeopardizing his health? If I change his care today to a San Francisco medical group the soonest we can be seen would be early June and then back to Konety and then…. what is the average time before surgery takes place? As you can tell I am about as frazzled as I get and need to make a decision that is well informed and doesn’t create more stress. Thank you all for helping me. I will return the good thoughts and favor when I have this experience behind me. Jeannette
Dx 10/5 Non Invasive Papillary2 Replies-
Since you’ve already seen Konety i would let him know the circumstances so that he can put you in the line-up for surgery as soon as you get your ducks in order.
As for my hospital stay…the Cleveland Clinic has hotels right on campus and you get a discount and UCSF has several places nearby
http://campuslifeservices.ucsf.edu/housing/off_campus/lodging/
My cousin recently had a kidney transplant there and they stayed in a beautiful apartment…i’ll have to ask her the name of it.
Every place is a bit different but with Cleveland i went the day before to have all my pre-testing done and stayed at the hotel and drank my wonderful GoLytely there…needless to say i did not get any sleep as my surgery was first scheduled at 5:30 a.m. Its not a bad idea to ask for a first surgery either.
Once the bowels are up and running (forgive the pun) they will kick you out pretty quickly. They advised that i stay at the hotel for a few extra days (honestly don’t remember how many) just in case any problems popped up and for the stoma nurse to visit every day to make sure i understood how to clean the tubing and change the temporary bag which i was all thumbs with. So i really think that was a great idea..at least i was confident about being able to cope with everything. If you contact the social worker at UCSF they will also arrange for a nurse to come to your house. I wish i could remember how many visits i got but it was quite a lot.
The guys can tell you how many tubes are still in you with the neobladder. I had 2 J tubes and the suprapubic tube. The J tubes were taken out locally as they are no big deal. For the big one I went back to Cleveland. Once all tubes removed you have the option of follow up there or in Davis. I did all but one of my CT scans locally and had them forward them to Cleveland just to make sure everyone was on the same page. My chest x-rays, blood work, all done locally. With The Cleveland Clinic i was given phone numbers of stoma nurses, doctors on duty and i could call at any time day or night and someone would answer my questions. They still will 6 l/2 yrs later. Hopefully Gracie will come on as she had Dr. Konety and tell you of her experience and follow up.So really if all runs smoothly you may be heading home within a week.
Holly is correct on the time line…though i must admit i did not follow it. It was almost 4 months from my diagnosis until my cystectomy…but i wouldn’t advise it for anyone else.
Pat -
Hi,
When I had my RC, my family and I drove the 300 miles in a blizzard. I did the prep that night, surgery in the morning on a Thursday I think. They headed for home on Saturday and left me with great nurses in the hospital. They came back the following week to take me home. I did not mind being there like that. With all the tubes, no food, praying for bowel sounds, etc – I was up for the space at the worst of the recovery.
Before we went home I got a discharge file for the local drs. I did have some set backs, but the Mayo Drs responded very quickly when called. They worked with local docs for day to day and chemo. I did go back to Mayo for tubes out and then for 3, 6 & 9 month check ups. It worked well and I have no doubt it was worth it.
Hopefully Pat and Cynthia will pipe in here, but I believe they recommend getting RC within 90 days of dx. The chair of urology at Mayo did my RC just 7 days after I asked for an appointment. When I first called them – they had me in for tests and to see Dr just 2 days later. I think if you have a refferal or if you are sure to tell them the stage and grade maybe they schedule quicker based upon priority. Again, others know much more than I with this.
I wish you well, Holly
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