Hey fellas! Wow, so today is 30 days since surgery! It’s been a wild ride. Lots of different things I’ve felt over the past month – both emotionally and physically. There were parts of this month than FLEW by and other times that to make it a through a single hour of nighttime felt like it took an eternity to pass. Nights were the hardest for me, from day zero post-op till even the occasional night currently. I typically sleep like a baby. However, when you have a bunch of different body parts that need propping, elevating, no pressure, gauzing from leaking, etc… it’s just not conducive to deep sleep, or even much light sleep. On top of that the mind can spin into unhealthy realms at that hour of the night, bringing you to some dark places that aren’t helpful. Thankfully one of the good friends I had with me in California was sleeping in the next room over and a couple nights when I was feeling anxious, I called him to just come talk to me and help me get out of a bad head space. The other thing I utilized very often and have still been using on and off is the healing power of music. I made healing meditative playlists for surgery and I am SOOOO glad I did. It really helped me to stay positive, relax, and was also a sleep aide.
I know this isn’t an uncommon struggle, but I’ll share that I have trouble asking for help, especially when I feel like it’s an inconvenience or bother to someone else. This process was truly humbling and even though I did a fair amount of mental subduing in terms of asking for assistance (both emotionally and physically) it was a lesson in asking for and accepting help and doing my best to receive it graciously.
Ok, so I’d like to do a body scan and check in about all the different wound sites, how they are healing, if there were any issues that arose, how they were addressed and just update on what my basic mobility and day-to-day life looks like right now. There were times, especially in the hospital when they stood me up the first time, that I thought I would never be “okay” again. The pain was overwhelming and I literally felt like I had the weight of the world draped over my shoulders. Even though cognitively I knew I was going to heal, my body felt like it couldn’t possibly recover from the trauma that I had been through. I don’t say this to scare you – it’s just important to know these thoughts and feelings may arise for you – but you’ll be ok. You’ll get through it. Just relax, rest your body lots, play some soothing music, take your meds, nurture your body the best you can with healthy food, plenty of water, supplements, good company that feeds your soul, and plenty of laughter!! It’s good to talk to other guys to get an idea of timelines for how you might feel tomorrow, next week or next month. But don’t get too fixated or frustrated if/when those things don’t happen at the exact same time for you. This is your story, and it’s guaranteed to be different in some or many ways than everyone else you know – and that’s absolutely normal, so try and not worry so much… You’ll worry anyway ;o) but just keep reminding yourself that it’s all gonna work out. It always does, one way or another.
As always, I try to give an as in-depth a description of things as possible, so this is going to be LOOOONG! However, I’m breaking it up into categories, so if you’re looking for specific info you can just jump to the bolded topic of interest or check out the updated photos since the last time I posted at about 2 weeks post-op.
GENERAL MOBILITY AND DAILY ROUTINE: I’m doing pretty well. Wednesday the 2nd I went with a friend to some doctor appointments since we both had phallo a few days from each other. When we were leaving one of the doctors offices on the 3rd floor, my friends used the elevator and I felt inspired to use the stairs. I sprinted down and beat them, by a LOT! I’m not bragging, I’m relieved!… I’m a runner and I’ve missed the endorphins from running and the feeling of being able to move my body quickly. This actually felt like a monumental accomplishment. First, because it was only like a 1 or 2 on the pain scale (tender scrotum). Second, because I was remembering back to being in the hospital and them standing me up on day 4 and how absolutely helpless I felt. I thought I was going to return to my bed and melt into it for the rest of my life. Not true!!!… My personal goals since returning home have been: 1.) that everyday I will go on at least a 15 minute walk with our dog in the neighborhood 2.) that I get in my car and do at least one thing out in the community. Be that to run an errand, get lunch, pick up mail, sit at the beach, get groceries, see a friend, or go for a joy ride… There are other more basic goals I have set for myself but mostly they are around nutrition, personal hygiene and wound care. It’s crazy how long it takes me to brush my teeth, prep my body for a shower (waterproof donor arm), take the actual shower, dry off, apply lotion and ointments, arrange gauze for draining areas, re-dress forearm, take supplements, and eat. That process alone is long and exhausting, but crucial to things healing well and to maintaining good mental health. You might not feel like getting up and showering, but once you do you’ll feel like a new man.
FOREARM (FLAP DONOR SITE):
- Xeroform: I had heard a couple of guys say that they were changing their Xeroform twice per day. I got it in my head that more was better and at about day 7 I switched to changing the dressing more often because it seemed a bit dry and as though it might be sticking to the graft and pulling it away from the wound bed a tiny bit during dressing changes. My arm started to get a little too moist and I think this possibly exacerbated the issue I was having because the graft was too moist to really dry out enough to attached to the arm. It didn’t cause any lasting issues from what I can tell, but I just mention this because in this case more doesn’t equal better. If your surgeon suggests changing it twice a day, do that. But if they say only once, it’s better just to listen to them. Everyone’s wounds heal different, some are naturally more wet or dry than others and this could be a reason someone else was instructed differently than you. So don’t assume, ask your surgeon.
- Swelling in Hand: My hand has had a bit of swelling here and there but nothing major. I was instructed by my hand therapist to gently massage and rub the swelling and fluid across the back of the hand in the direction of the “bridge” since that is the only part of the forearm that where drainage is capable of happening. This does help. You can do the same thing with your fingers if you have swelling there. Just gently start at your finger tips, encircle the finger with your other hand and slide it down towards the web of your hand. This will encourage fluid to make it’s way towards the bridge to drain. The back of my hand feels a bit tender, kind of like a bruise when I press on certain areas. Also, I am continuing to have some hypersensitivity in a “V” shape along the back of the thumb on the hand. I have been instructed by my hand therapist to desensitize the area by touching and rubbing it. The instinct here is to avoid touching the area because the sensation is awful, but it only gets better if you retrain the nerves. This is my hand today, at 30 days post-op:
- Strength in Hand: The strength in my hand is probably the best thing I have going for me in terms of my forearm. I probably have 30 or 40lbs of grip strength, just within the hand and that would be in terms of pulling straight traction at the wrist. Lifting something up sideways that would need more wrist flexion or stability is more like 5 or 10 lbs, that’s much harder.
- Flexibility in Wrist: Passive (or unassisted) ROM (range of motion) is fairly limited. Turning from palm up to palm down while keeping the elbow stable at my side I probably have 80% of my ROM back. Active (or assisted) ROM, I can use my left hand to aide in the turn get it to 100%. Flexing the wrist forward and backwards is the hardest right now. Passive ROM is about 20-25% right now. Active ROM is about 40-45%. I do believe it will get back to 100%. Based on the multiple other wrist surgeries I’ve had (aside from the wound itself) my hand and wrist aren’t really acting all that differently than they have with the past surgeries, which is encouraging.
- OT & Rehab: Again, in my experience with past wrists surgeries, and this one is proving the same, you really have to push through the discomfort and pain in order to reach your pre-surgery state. If you just wait till it doesn’t hurt before you start to push yourself, the scar tissue is only growing and forming adhesions to the tissues under the skin. Early and somewhat aggressive (or maybe persistent is a better word) exercises and use of the hand, wrist, and elbow will serve you much better in the long run. The first thing I did when I woke up from surgery (seriously, even before I looked at my penis) was start moving my fingers and clenching my fist the best that I could. I really do think that this has it’s benefits in quicker and “easier” recoveries. Your hand/arm isn’t going to feel good regardless of when you start to use it. But as the saying goes, the only way out is through.
- Slough: I had what is called “slough” on my forearm. I had been worried that underneath this tissue was raw open skin. The split-thickness graft that Crane uses is 1/100th of an inch – that’s insanely thin. So I was having a hard time imaging that there could be anything left of the graft underneath of the slough… I couldn’t have been more wrong. The first photo was taken after I had peeled one tiny piece of the slough off, but the majority of it remained intact. I was really worried about all the dark spots:
However, Dr Crane instructed me to wash my arm gently with a mild cleanser like Cetaphil and to remove the slough. The following is what my forearm looks like after having removed all the slough that would come off. I ended up very very gently using tweezers to remove the pieces that were loose:
It’s actually pretty amazing. I was shocked. Healthy pink graft!! This is just a great reminder when things are looking rough. Don’t judge a graft by it’s cover. Here are some photos of the underside of my forearm:
The edges of the graft are really well adhered to the healthy tissue around it. There are some areas that have started to blend in quite well and other areas that will be there within a few days I would imagine.
This border where the two different splint thickness grafts were sutured together is having a bit harder of a time but it’s doing way better since I stopped the Xeroform and it’s had time to dry out and adhere better. Still, this is the roughest part of my arm right now. There are few spots that are a touch on the moist side, so when I apply moisturizer to my graft I make sure to avoid those areas as to allow them to further dry out:
The Leash: This area has been interesting. I feel like I have an unusually long leash compared to some other guys I’ve seen. My incision travels past my elbow. I never asked Crane why this was the case with me. I’m guessing that the place where my artery branched was just at a higher placement than other guys. If that were the case you would think I would have been able to have an extra 1.5 or so inches in length in the phallus, but this was not the case:
I am having some reoccurring swelling along the right side of this incision line on my tattoo. This has been temporarily remedied by gently pressing and rubbing along the right side of the incision, starting closest to the graft and encouraging the fluid to move down the arm. However, it pretty much comes right back. I do have some adhesion along the this incision already and I think normally the fluid would drain straight down but I’m guessing that the adhesion is limiting this draining function. In the meantime, I am continuing with massage to encourage the draining. This photo really captures just how dramatic it looks at times:
THIGH (SPLIT THICKNESS GRAFT SITE): Xeroform finally completely fell off at 3 weeks. Since then I have been using Eucerin on my thigh whenever it dries out, this is usually about 3-5 times per day. It’s really itchy, but the lotion does help some with this. It’s the most itchy when I go too long without applying a moisturizer. The color changes drastically depending on if I am sitting or standing and how cold I am. Historically, during early scar healing, if I’m cold, my scars turn purple. I feel like this usually lasts a solid year for me, but sometimes longer. The purple can be quite dark but as soon as I warm up it turns pink again. I’m not having any issues with my thigh aside from the annoying itching. But itching is a really great sign, because it’s a symptom of healing. So all good things on this front.
PHALLUS: I have had zero necrosis! My phallus has really healthy tissue, and an excellent blood supply! Incision line on the underside is clean and skin colored with no more scabs. I can still make out a line of sutures that are intact along this incision line. Everything is healing extremely well and I could probably gently pull the sutures out but I definitely won’t be doing that. I haven’t been picking at anything. I’m just letting my body dissolve stitches and scabs at it’s own rate and when they fall out/off that’s great. At day 10 post-op I was walking around the house a fair bit and letting my phallus hang. I was moving slowly and the tension from him hanging was not intense. However, all of a sudden I noticed there were drops of blood trailing where I had been walking, I had had a thick scab that was plugging the tip of my urethra that Crane told me not to worry about removing. I was scared it might heal the UL shut, but he told me that it was normal and best to just try and ignore it. This scab must have dislodged itself and all the drainage that had been waiting to escape through the phallus came pouring out at once! Good times! This mild to moderate bleeding continued for a solid 3-4 days. I was worried about it and emailed Crane. Again, he reassured me that this is normal and was not cause for alarm. It did eventually stop. Currently, I occasionally have some drainage that barely even drips, it’s more of an ooze and it’s usually a cloudy or light light light pink color, no dark blood anymore. Sorry, I know. None of this is pleasant to hear about but it’s just all part of the healing process. Another thing I’ll mention in terms of the phallus is that depending on how you place him he will get weird creases or wrinkles. More than a few times (because I can’t feel him yet) he’s been in some crazy weird positions and when I unwraped him from all the ABD pads, he looks pretty funky and crooked. He’s taken the shape of whatever odd position I had him packed away in… But DON’T worry, he won’t stay like that. Let him air out and stretch his legs and he’ll be back to normal shape in no time!
GLANSPLASTY: I had my glansplasty done as a second stage. I mentioned the reason in other posts but I’ll state it again, because people keep being confused about why I didn’t have it done at the time of the initial surgery (which most people do who go to Crane/Chen). I had scarring from an incision because of a surgery when I was 9 yrs old. Pre-existing scarring puts you at a higher risk for necrosis and graft loss because scar tissue doesn’t have the kind of healthy vascularity that regular tissue does. And poor blood supply is really the leading cause of necrosis. So I was really vocal about wanting to wait to do the glans as a later procedure, even if they thought it might be ok to do during stage one. So my glansplasty was done at the Greenbrae Surgery Center, which is in the same building as Crane/Chen’s office, the entrance is just on the other side of the building. This procedure was done at 15 days post-op by Dr Chen. He was great and I felt really comfortable with him – he has an excellent bedside manner. I absolutely recommend him, I think he’s just as skilled as Crane. There’s no doubt his waiting list will quickly grow to the length of Crane’s in no time. I talked with him in pre-op about what I wanted for my glans and showed him a picture of the outcome I was aiming for. He was happy to oblige. Initially I was told this procedure was going to be done under local anesthetic, but they gave me the option of propofol which is essentially like general anesthesia, you are asleep and you don’t remember anything. I selected this option. When you wake up from surgery there is no dressing or bandage on the glans, they don’t use a bolster like some surgeons do around the ridge of the corona. There was very little blood and just some bacitracin that had been applied to the glans. When I got home I laid down for a few hours and when I went to get up to unplug my catheter, I noticed my glans started bleeding. I was applying pressure with an ABD pad but I wasn’t really able to stop the bleed. During this time I was in contact via email with Chen. He instructed me to apply point pressure to the area where the bleed was happening. I did this and I was able to stop bleeding eventually for 1 hr. then after standing up again it returned. I applied pressure holds again and was only able to stop bleeding for 1 min. This continued from Friday, starting probably 5 hours after the procedure, till early Monday morning when I called Chen and told him that it just wasn’t working and that I needed to see him. In hindsight, I wish I had been more vocal about the amount of bleeding I was having and the difficulty with stopping it. I don’t have any doubt that I would have received in person assistance much sooner. It was an easy fix and I could have spared myself a lot of worrying and at least 20 ABD pads that I bled through over the course of 2.5 days. Chen asked if I could make it to CPMC to meet him. I figured he was going to need to cauterize something, and he said occasionally they do need to do that but almost all of the time a pressure hold does the trick. The reason they try to avoid cauterization is because you are compromising vascularity, which makes sense. He brought me to a free exam room across from the North tower at CPMC and did two pressure holds using the tip of a bandage and a gloved hand. The first pressure hold was directly on the spot where the bleed was, I had also been pressing there. The bleed did not stop. He then said that because of how they fold the skin over, the location to press on can be a bit away from where the blood is coming out. SO, he moved his finger about 1 cm above the exit spot of the blood and held that for 1o min and VOILA! It clotted!!! He had me walk around the room to make sure it didn’t unclot. After this I had no issues. Such a simple fix, wish I had known the magic spot to press days earlier… For me, one of the hardest thing with this surgery has been asking for help, even from medical professionals whom I know it’s their job to help me. Please don’t feel bad about speaking up and getting your needs met. If you need to, have your caretaker speak up for you.
GLANSPLASTY DONOR SITE/INCISION (right side of groin): Zero issues, steri-strips still on at 15 days post-op. I gently removed them today. No swelling, pain, or infection. Healing perfectly. I can already tell this incision is going to be pretty much invisible. It’s WAY thinner than my hookup incision. This is what it looked like immediately after the steri strips came off, even before washing it:
SCROTUM: I am continuing to drain very small amounts of fluid everyday along a small opening along one of the incision lines on my scrotum. Initially I had very severe swelling and bruising, so the draining is actually needed in order to allow the scrotum to expel the residual buildup of fluid. Each day my scrotum gets a little more malleable and softer/deflated, this is a good thing. From the time of creation, it’s an empty sack, but initially it looks REALLY full because of the swelling. In the beginning you think: damn, I’m not even going to need testicular implants. But the swelling will decrease drastically over time. I did mention it a couple weeks ago but I’ll mention it again, I developed what is called an eschar along the scrotal incision line, it looked like a thick black scab. It was in the shape of a cross. Initially it looked pretty rough, especially when I had all the bruising as well. My scrotum was so bruised it looked black. As of last week the eschar had completely fallen off and 100% of my bruising is gone. So my scrotum truly looks nothing like it did initially. My whole sack is 100% pink now and just has that small opening where it’s continuing to drain fluid. I do have a small urine leak at this juncture. Crane is pretty confident that when it eventually stops draining and closes up that the urine leakage will likely stop as well. For this reason I requested to keep my SP in for longer to aid in healing so that urine wasn’t flowing through it and I wasn’t having to press on it after peeing to fully clear the UL of urine and then clean and pat it dry after peeing each time. There is no data proving that it actually helps to keep the SP in for longer, it’s just my gut instinct and Crane was on board with my plan. When I get down about still draining and the small leak from that area I just go and look at photos of my scrotum from 3 and 4 weeks ago and see how drastically I’ve healed in that time frame. I’m really hopeful that another month of healing is going to land me in an even better space. I do recommend taking daily or regular photos for this reason, even if you don’t show anyone and they are just for yourself. They can be great aides in seeing if your are developing any issues and also when you feel like you aren’t making any progress.
PERINIUM/VAGINECTOMY SITE: Initially for the first 10 days or so my vaginectomy line along my perineum looked amazing. However, at about 10-14 days post op I noticed that I had developed a small hole, a little smaller than the size of a Q-tip head at the mid point between where the lowest point of my scrotum hangs, and my anus. Although there is no way to know for sure, I’m wondering if the constant wiping of fluids draining down onto this area from my scrotum, and the regular cleansing with wet wipes of the drainage, if the glue that was used on the outer layer of this incision closure was wiped away and encouraged the hole to form. During my post-op appointment, Crane felt confident that it is going to either close or fill in on it’s own and told to me keep it clean and dry. It does look like it might be filling in from the inside out but it’s an area that is really hard for me to closely inspect, even with the handheld mirror I have. There might also possibly be a little drainage continuing to come from this area, I’m not sure though. And if that is the case, it’s unlikely to close until the draining is finished.
NERVE HOOK UP INCISION (left side of groin): The incision line is clean and healing very well. At day 10 when I was up and walking around, the same day I started to have the bleeding dripping out of the phallus, I noticed that I had some swelling and firmness bulging a bit next to the incision line. This lasted for about 2 weeks. Had it continued to grow and get worse it could have been a hematoma that needed to be addressed, but because it was just a little swollen it wasn’t reason for concern. There is a bit of swelling still present next to the incision line, but it’s definitely decreased over the past couple weeks. Most of the sutures are still present as well. The scabbing has decreased by about 75% and much of it is just healthy skin with the sutures still sewn in. 100% of the sutures that were used throughout my entire surgery were dissolvable:
SUPRA PUBIC CATHETER: I had my original supra pubic catheter switched out for a clean catheter at 27 days post op. At my first time peeing on day 18, I was already voiding more than 75% of my bladder, but because of the small leak, as I mentioned above, I requested to keep my SP in for some additional time to see if it might hasten or help the scrotum along with it’s healing. Most people get their SP’s out at around 3 weeks with Crane/Chen if there are no issues. Had I not requested to keep it in, Crane was going to remove it at my last post-op appointment, day 20, since it was safe to do so at that point with me easily emptying my bladder through my phallus. Make sure to keep up with cleaning around the entry point to your body. The hole that they create that accommodates the tube in your belly is called a stoma. This hole will want to try to heal around the tube and create little scabs. Once or twice a day, gently clean these scabs from the edges of the skin and from the outside of the tubing. It can be helpful to place a very wet and hot (be careful) washcloth around the entry point for 5-10 minutes to moisten the crusties before removing them.
I really can’t advise strongly enough for guys to order a couple stat locks for your SP. They did put one on me during surgery that I woke up with, but they didn’t have anymore to give me. The hospital only had them as part of an entire catheter setup, and understandably weren’t willing to open a kit just to give me the stat lock that they would need for the kit. Because of the added tension of the collection bag that was attached to the tube in the hospital, the stat lock fell off by the time I left the hospital. But you can get a lot more life out of them when you’re plugging your SP and not using a bag that’s constantly pulling tension on the adhesive. These stat locks can easily be found online for purchase. Order a couple well before your surgery, shipping times can be a week easy. Using tape to secure your SP is a drag. Stat locks are well worth the 6 or 7 bucks that they cost:
Urinating: Two suggestions… Make sure you get a couple “graduate” containers at the hospital. These can be helpful for a few different reasons. First, you will need to know if you are voiding at least 75% of your bladder through your phallus before it’s safe to remove your SP and have you only voiding that way. Graduates can be a great way to measure if you are doing this. I was also peeing in one and held one between my thighs to see exactly how much I was leaking through my scrotum. I’m glad I did this because it can be deceiving to just eyeball it. The other thing it’s good for is just peeing into if you have a bit of an unreliable stream at first. Lots of guys spray or shoot off in crazy directions at first. I noticed that my stream was really straight but towards the end of emptying my bladder it shoots to the right a bit when the pressure starts to weaken. Usually this is a result of lingering swelling along the UL and should reduce or completely resolve itself once your swelling has subsided.
I am currently only peeing out of my phallus one day a week to see if the small leak I have is reducing at all. I will continue to do this through this week or possibly next week and then completely remove the SP even if the leak is still present.
That’s it for now. I’ll probably update again at 6 or 8 weeks. Take care.