You do what you must... I went out to eat w/ the GF and her parents tonight, and caused a major line in the men's room - which may have met code, but definitely didn't have enough 'positions' for the size of the place... Someone was camped in the HP stall, so I had to park in front of the urinal and go through my entire cath routine there, which takes 4-5 times as long as it would have for a typical 'customer'

Overall I'd say the place had good food, but parking was painful, noise level was high, and getting around was difficult, I'm not inclined to go there again...

WheelyCurious

Earlier this morning I got an unexpected call from the surgery scheduling person! She wanted to talk to me about scheduling my surgery date for the big

I wasn't expecting it since I have a urodynamics and cytoscopy exam scheduled in a couple weeks and thought they were waiting to see the results of that before deciding on the next steps.... However I wasn't going to argue!

Unfortunately I had to tell her that I was doing the bladder electrostim study that I mentioned earlier, and that I'd agreed to postpone surgery until that was done at the end of August. I also just signed up for a disability shooting match in mid September that I don't want to miss. She said that actually would work well, so no problem. Only minor issue is that the Operating Room folks haven't opened up the September schedule for booking yet, though she expects them to in the next few days. She said she'd be getting back to me as soon as the schedule is posted...

So it looks like I'll be getting 'fully qualified' in mid-September! (I'll need to change my avatar, and ask about changing my user name from WheelyCurious to WheelyFIXED... laugh:)

Another sort of minor milestone in the larger sense... I got one of the hospital's periodic newsletter emails sent out by the begging department... The end of these lists a few 'resource' links... One of them was for the hospital TG center (WOW, TG has gotten accepted enough to be mentioned in a letter to potential donors!)

It gets better! Out of curiosity I clicked on the link, and in addition to all the stuff about how to make appointments and so forth, they had a list of surgeries offered, with orchiectomy listed right along with all the others, and with the same sort of information (no mention of peniectomies though). It seems that our surgeries are getting the same level of treatment as the other TG ones. This seems like a notable step up from what I've seen on a lot of the other sites pointed at by folks in the past where it seemed we got the "will do it if you ask, but won't advertise it" treatment... They do have a fairly steep set of prerequisites listed, essentially a 'tough' interpretation of SOC 8, but I don't know how negotiable that might be for specific cases...

WheelyCurious

I hope all goes smoothly for you Wheely Curious.

That you achive what you want and are happy once the surgeries are nicely healed up.

All the best.

Thinking of you!

Some steps forward and some backward...

I was supposed to have a urodynamics study last week. The hope is that this might find why I'm having a lot more leakage than I used to, and what can be done to stop it... Per the published standards of care for paras that do intermittent cathing like I do, my bladder is expected to be "colonized" w UTI bacteria, and that because of this, we are only supposed to be diagnosed and treated as having a UTI if we have actual physical symptoms (Fever, pain, etc) I showed up for the appointment, they took a sample at which point they told me that I 'had a UTI' even though I had NO symptoms, so they were refusing to do the study, so what if you wasted a trip...

Now they have me on Amoxicillin until the rescheduled test in the middle of August... So much for all the warnings to avoid extended periods on antibiotics, with the risks of developing resistance, sensitivities, increased risk of C. Diff infection, etc... (Of course the doc couldn't have been bothered to have ordered a test BEFORE the appointment...) Didn't help that the doc was one of the pompous ass w/ a GOD complex "Don't question me, I've got EXPERIENCE" Well screw you doc, I've got LIVED experience...

On the more positive side. back at my last appointment w/ the TG doc, she put in referrals to two different TG surgery specialists, one at the hospital she's at and where I get most of my other care, and one who works at the TG center that is part of another major local hospital that is part of the same network...

I had a consult with the MGH doc a few weeks back, and at the beginning of June had gotten a call from his scheduler, but they hadn't opened up the OR schedule for the time I wanted, so she was going to get back to me. I was expecting it in a week or so, but haven't heard anything yet. (I have reached back out to the doc, but no response...)

The second one took ages to respond, but I filled out their paperwork just to keep my options open...

I finally got a call from the intake people at the other hospital a couple of weeks ago, and they scheduled me for a consult with their surgeon earlier today... He said much the same about surgical options, and otherwise I felt like he would do a good job... Bottom line, I think I'd be happy with either one cutting my nuts off.

I told him that essentially I'd long since decided I wanted the surgery, and would be willing to have which ever of them could give me a date first... He said he'd have his admin reach out to me in the next day or two to discuss dates...

So another tiny bit of progress....

WheelyCurious