Gail’s Aug 11th GCS at NYU. . . .

[Dena]

I have seen donuts sold in the Walmart pharmacy and in Walmart as neck pillows for travel so hopefully you will find several to chose from.

[Gail20]

Thanks for the ideas!!  :-)

Yep, standing and laying down is how I spent most of my first few weeks. You may need a better donut, mine worked well enough to be able to sit and I needed some form of pressure relief for the first 7-8 weeks.

Thanks Sadie, Just hearing your shared experience really helps. . . except fr the 7 to 8 weeks part . . . .   ;-)

[Gail20]

Day 12:

Trained up to NYC for appt with both surgeons. Made the 7am train after dilating. Cant believe I puled that off.

Hope this isn't too much info but when they released me last week I could not pee. :-(  They were not that concerned, and since I had a top NYU Urologist doing that part of the surgery, I was reasonably ok with it. Still. i left with a Catheter and that just added lots more things to maintain.

They removed the Catheter yesterday morning but nothing happened.  They told me go walk and drink LOTS of fluids.  I spent the next 4 hours trying to get my bladder to work again. Finally, I was able to get it to work again in very short spurts but not enough to empty it. They were borderline ok with it and released me with no Cather. On the train ride back to Princeton, my bladder got incredibly full. I exited the Train in Princeton and headed straight for the women's room. For the first time I just peed on demand. Still doesn't empty completely  but from then on it's basically working.      happy girl!!

[SadieBlake]

Thanks for the ideas!!  :-)

Thanks Sadie, Just hearing your shared experience really helps. . . except fr the 7 to 8 weeks part . . . .   ;-)

You seem well ahead of my curve and I paid the hard way for arriving to surgery quite fatigued. Everyone is different and for me the big turning point was at week 7.

And big yay for peeing! I remember that sensation of not being able to fully empty.

[Gail20]

Day 16
Well, Friday morning it was back to NYC to see the Urologist over my Bladder not fully emptying. They decided it was best to let it calm down so thye put the Catheter back in and sent me home.  I'm scheduled to  see all my Drs on Tues morning when they're hopefully supposed to tell me its OK to fly home.  Its likely they'll release me and I'll fly home with the Catheter still in.  My local Dr will remove it in 10 days. This has been a hassle but I'm older and thought something like this might happen.

Overall the work is beautiful. I have no trouble dilating and all the suturing is healing nicely with no signs of infection at all.  All the new structures look incredibly good,  Its almost like they all magically appeared. . . :-)

[EmmaLoo]

Go Gail!

Sorry to hear about the bladder and catheter issues. I think the catheter was one of my least favorite things from my GRS the experience and I didn't even have that much of a problem.  My heart goes out to you having them put it back in. Post-op +8 was long enough for me to be begging for the damn thing to come out.

I can totally relate to the bladder issue as well. Getting control of the bladder functions is more of an extended process than anyone mentioned. Especially for people over say... 45. I'm guessing, no one quote me on this. I was aware that there was a risk, but there should be more information and discussion on this issue. There's a significant amount of impact in that area and we still have to take the prostate gland into account even if it's considerably smaller. I haven't struggled with the ability to pee, but it's taken a while to regain my control and force. I don't know whether it's related to nerve regeneration or muscle control, I have to pay attention not to put myself in a position where I might have to hold it. If it wasn't slowly improving, I would be worried. Fortunately, that's not the case.

I know it's a bumpy road to recovery. You'll do great. Feel free to reach out.












especially for 

[Gail20]

Thank you Emma for the support and info. . . You are so right.  This is an issue if you're older especially if you've been in the habit of holding off peeing.  You stretch your bladder and muscles and as you get older they don't perform as well. They have a name for it, "lazy bladder",.  Teacher, nurses and policemen all seem to have issues with this. I was guilty of this.  Word to the wise: "When you feel you have to pee, PEE!"  Your older self will thank you!!

[AnneK]

You stretch your bladder and muscles and as you get older they don't perform as well. They have a name for it, "lazy bladder"

A few months ago, I mentioned I had BPH.  In addition to prescribing meds to shrink my prostate and improve flow, my doctor sent me to a urologist.  I was at his office a couple of weeks ago and last week, went to the hospital, where he looked inside my bladder.  He mentioned my bladder doesn't empty fully, because it had developed folds due to not being able to urinate properly.  He compared it to a balloon that doesn't go back to it's original shape, after being inflated for a period of time.

[Gail20]

3 Weeks + 2 days:
I haven't posted cuz sitting is not much fun and I prefer to post using my laptop vs phone. . . this is my first outing to my fav coffee house. . .

Healing has been interminably slow. . . each day since Ive been home since last Tuesday has been about the same. . except for Friday when I thought I was going to have to call 911. I woke up and went into the bathroom to brush my teeth and started bleeding a LOT!! There was a steady drip, drip, drip coming out of my vagina.  I'd had absolutely no problems like this at all before.  My dilating had been totally uneventful.  I laid down on the bathroom floor to take any pressure off this area hoping it would help stop the bleeding. I always carry my phone around with me just in case something like this might happen so I called my local GP and they said call 911. . . I delayed the 911 call and after 45 minutes the bleeding stopped. It was stupid not to call 911 but in the end I got away with it. (don't do this) I laid on the floor another hour after the bleeding stopped afraid that if I got up the bleeding would start again.  It didn't. I figure I lost a pint of blood tho plus 2 bath mats and 2 towels.

The LGBT RN liaison for Dr Bluebond-Langner believes that what happened was that a clot way up in the top of my vagina got dislodged and blood just flowed freely till it finally clotted over again. . .

I actually was able to dilate late Friday before I went to bed and since then I haven't had a hint of a problem. I also now have all my depth back too . . . So in the end the day turned out fine but no one is was more surprised than me!! 

The LGBT RN asked that I send pics yesterday so they could see where I am in the healing process. Dr B says I'm healing "beautifully" and I'd have to agree. I have none of the problems I'd heard of here.  Stitches are all healing nicely without a hint of infection.  There is absolutely no dead skin.  Everything looks pretty. The Clit, Urethra and Vagina all look like they've been there all my life.  Only the stitches in my leg creases and below my Vagina give it away . . .

Great surgery team; Dr Zhao (Urologist) and Dr Bluebond-Langner using a Robot seems to be how everything was crated so precisely. Also, round the clock care/antibiotics in a major hospital has to contribute to the outcome. . . and maybe good genes I guess. . . :-)

[Laurie]

Hi Gail,

Do we need to send you a 24hr/day babysitter to make sure you don't do terribly scary things like that again? Sheesh!  And just where did you leave your brain  before you went into the bathroom?  Blood driping and a doctor telling you to call 911 means CALL 911  
  I am glad it all worked out in the end but you should be smacked up the side of your head until iy contain some common sense.

Hugs,
  Laurie

[HappyMoni]

3 Weeks + 2 days:
I haven't posted cuz sitting is not much fun and I prefer to post using my laptop vs phone. . . this is my first outing to my fav coffee house. . .

Healing has been interminably slow. . . each day since Ive been home since last Tuesday has been about the same. . except for Friday when I thought I was going to have to call 911. I woke up and went into the bathroom to brush my teeth and started bleeding a LOT!! There was a steady drip, drip, drip coming out of my vagina.  I'd had absolutely no problems like this at all before.  My dilating had been totally uneventful.  I laid down on the bathroom floor to take any pressure off this area hoping it would help stop the bleeding. I always carry my phone around with me just in case something like this might happen so I called my local GP and they said call 911. . . I delayed the 911 call and after 45 minutes the bleeding stopped. It was stupid not to call 911 but in the end I got away with it. (don't do this) I laid on the floor another hour after the bleeding stopped afraid that if I got up the bleeding would start again.  It didn't. I figure I lost a pint of blood tho plus 2 bath mats and 2 towels.

The LGBT RN liaison for Dr Bluebond-Langner believes that what happened was that a clot way up in the top of my vagina got dislodged and blood just flowed freely till it finally clotted over again. . .

I actually was able to dilate late Friday before I went to bed and since then I haven't had a hint of a problem. I also now have all my depth back too . . . So in the end the day turned out fine but no one is was more surprised than me!! 

The LGBT RN asked that I send pics yesterday so they could see where I am in the healing process. Dr B says I'm healing "beautifully" and I'd have to agree. I have none of the problems I'd heard of here.  Stitches are all healing nicely without a hint of infection.  There is absolutely no dead skin.  Everything looks pretty. The Clit, Urethra and Vagina all look like they've been there all my life.  Only the stitches in my leg creases and below my Vagina give it away . . .

Great surgery team; Dr Zhao (Urologist) and Dr Bluebond-Langner using a Robot seems to be how everything was crated so precisely. Also, round the clock care/antibiotics in a major hospital has to contribute to the outcome. . . and maybe good genes I guess. . . :-)

So, is the moral of the story, don't brush your teeth after having GCS? Wow, that is scary stuff. Yeah, don't do that any more. First of all, you have me agreeing with Laureeta, second of all, ...don't do that! Gail that so reminds me of my FFS when I found myself on the bathroom floor, bleeding. Glad you didn't need the surgery to fix it that I did.
I still don't understand how the use of a robot makes things better. Doesn't it just respond to the movements of the surgeon behind it? Does it smooth out their  unsteadiness or something?
Glad you are doing well. The not sitting thing can be a real pain in the... well, you know. There is hope, I am less than 3 months out and don't need the donut any longer. I can even lift kids for my work. You will soon be doing the high leg kick like the other Rockettes. Thinkin of you Girl!
Moni

[Gail20]

I still don't understand how the use of a robot makes things better. Doesn't it just respond to the movements of the surgeon behind it? Does it smooth out their  unsteadiness or something? Moni

The Robot increases accuracy a hundred fold.  They can make more precise movements with less errors.  It takes any worry out of perhaps breaching the gap between the neo-vagina and the rectum. All of Urology has been moving to the Robot for the last decade. Its state of the art. . . You're not going to find Robotics outside major hospitals and medical centers tho.  Dr Bluebond-Langner's reputation got may attention and the the team surgery approach and the robotics is what sold me on the NYU program . . .

We have several surgeons around the country who do phenomenal GCS work. Many have innovated in various ways. Having a medical center like NYU jump in, teaming up a top Urologist and a Plastic surgeon plus robotics is really innovative. We all love our surgeons after the fact and I certainly fall into this category too . . . .

[HappyMoni]

Thanks for answering that Gail. I may have to see if I can find a video of that on line. It is interesting. As for the team approach, I think there is usually a team working on a patient with GCS. Not often do you have two doctors working together, though. My doctor made clear that under her supervision a PA would be doing some of the work. Hope you are progressing well.
Moni

[Gail20]

Week 4:

It still hurts to sit but not for the obvious reasons. 11 years ago I pushed those two pesky items up into my lower abdomen and forgot about them.  They liked it so much they evidently grew in. When the surgeons went in to remove them they had to do some creative cutting and the net is that the nerves there didn't like it one bit. The skin over this area is VERY sensitive.  A sheet laying on it hurts, so clothes are not fun at all. The good news it is ever so slowly getting better. . . .

My surgery really went incredibly well and the results are outstanding. Still I had problems but none of the ones that I'd read about here. I had a LOT of bloating right after the surgery and it was VERY painful. Never heard anything about that happening to anyone before.  My bladder didn't want to cooperate so I ended up getting released with a catheter for 10 days.  Its out now and my bladder is getting back to normal now.  (who knew a good pee is could be soooo satisfying) In contrast, my Clit, Urethra and Vagina all look like they've been there all my life. All the stitches are healing with not a sign of any infection anywhere.

Dilating: I have noticed, that while I can still get maximum depth, its becoming harder to get it in.  I seem to be LOTS tighter than I was at first. . .  I guess I'd heard similar reports from others here, that it can become tighter as it all heals. . .

At week 4 I drive to the store, run errands, go out with friends a bit in the evening (no alcohol) but I'd be doing LOTS more if not for that lower abdomen pain which no one else here has likely ever encountered.  Sooooo a word to the wise.  If you've tucked those guys up there and forgot about them, maybe retrieve them once and awhile so they don't grow into their new home . . .

[SadieBlake]

The Robot increases accuracy a hundred fold.  They can make more precise movements with less errors.  It takes any worry out of perhaps breaching the gap between the neo-vagina and the rectum.

This. While I don't think Wittenberg is using robotic assist for these procedures, the fact that that's in her resume was one of the things that sold me on her -- that and the fact that her first vaginoplasties were on natal females born without vaginal cavities, yes it's a different procedure, but she cut her teeth a long time before she started doing MTF work. And for all I know, she did use some robotic assist, I trust her, I didn't ask details. We're both professionals, she has in fact used medical devices I designed. I trust her to do her job right and all we talked about were the specifics that differ between people doing the current basic PI technique and which specific flavor she was using.

[Gail20]

As for the team approach, I think there is usually a team working on a patient with GCS. Moni

Oh yes on the team approach. When they walked me into the operating room and had me lie down, there must have been 8 to 10 people there all garbed and masked making preparations.  It looked like Star Wars to me. By Team tho, I was specifically referring to a Urology Surgeon and a Plastic Surgeon cooperating on the surgery both bringing their unique expertise . . .