AFTER!!

This is hard. I mean really really hard.

It's also good, it's a good process to heal from this elaborate surgery. But OMG it's hard.

I'll start off by saying the surgeon is very pleased with how things went down in the actual surgery. He didn't find things he was hoping wouldn't be there, and he found it all relatively according to my scans and exams. In other words, no surprises, which is amazing. He did find that the mesh was folded over on itself, which could definitely have been causing my pain. He was able to take out the clips that were bothering me, and about 60% of the mesh, which is really good. The other 40% was too incorporated to remove, but since it is incorporated, it shouldn't cause me pain.

He pulled, cut, manipulated and flapped all sorts of muscles in my stomach and upper thigh to get proper coverage over gapey. It is really incredible. The big reveal was yesterday, I saw what he did. I now have one big, smiling scar from hip to hip, like 4X a c-section scar, and a perpendicular one by my belly button. That's it. No more gapey, no skin graft. Amazing. Incredible. I honestly never thought I'd do this surgery, and here I am, after it now. I did it. I'm bad*ss.

But I cried when physical therapy came and told me we are getting me out of bed. "I'm not ready, give me another day" Nope. Now was the time. So I didn't have a choice, I did that. I got out of bed on Tuesday, not even 24 hours from the surgery. G-d that was hard. Then they took out the catheter, and I had to use the bathroom independently. All these stages were so insanely hard, I cried. But I had to do it, no matter how hard it hurt. And it hurt. A ton.

In fact, I don't think I've experienced this much pain since the mesh surgery (2010), and before that, not since NF. It's on that level. You don't want to know all he did with muscles there in my belly, of course it's going to hurt like a b*tch. I said the scar was like 4X as big as a c-section, but the pain is much more than 4X that. Muscle grafting is so painful.

Getting out of bed, walking around to the bathroom, the occasional walk in the hallway, it's all so complicated. The doctor doesn't want me straining at all, so I'm trying to do everything with relaxing, but it hurts so much it is hard to relax, obviously.

The nurses help a lot to be on top of the pain meds. The nurses are *uh-may-zzing*, actually. So kind and sweet, always trying to help, always answering the call button within a minute, always offering alternatives if they can't give you narcotics at the time you feel the pain coming back. They are just so sweet, all of them, I am blown away with their kindness. I was in culture shock that first day when the nurse was so nice to me-- it's a pretty different experience (read: radically different) than most Israeli nurses. I definitely understand the concept of medical tourism-- it makes sense to me now, and especially after Mayo last summer as well. I know one can have a bad experience here, but I have been very fortunate indeed.

I just still can't believe that Gapey is gone. I'm good with it, don't get me wrong! I just want the pain to subside to easier levels. Today is 5 days after surgery, and while it's a little better, I'm still moving *very* gingerly, and in lots of pain. The meds they give me for pain (Oxycodone & valium, believe it or not, it helps with pain too) usually give me a big nap. They put me right out, so I'm sleeping during the day a lot too, which I am pleased about. Also at night, last night I slept through the night for the first time since surgery (except when the nurses woke me to take my vitals, but I got right back to sleep thereafter).

OMG, did I tell you about my room?? No? Well.....
It's the best room on all the floors, the corner room. The size of it, well, Soroka hospital (the one in my city in Israel) would have put 6 people in it with flimsy curtains surrounding the beds. This was a private room, all mine! Purely by chance. The view, it was stunning. (I got discharged today and am currently at a hotel). I had a corner room with the East river outside, and the skyline all around the river. Sunrises and sunsets were stunning, we took so many pictures. There was a private helicopter port right under the window, so we saw helicopters landing and taking off all day. And the barges, yachts, and boats that passed by were all stunning. I wished I could be on one! Amazing room, again, very lucky. There was a comfortable pull-out couch for Robert to sleep on, and he slept well most nights. If I was up and in pain, he was up though, my night in shining armor.

Seems like the kids are doing well. We've "seen" each other on the phone (face-time) a lot, and spoken with them a lot. It's one week down, five more to go. I hope they'll be OK. If you see any of them around, just check in with them OK? :)

It's almost Shabbat in New York. I miss Shabbats in the Holy land. There's nothing like them. This blog is long enough, I'll write more soon. Next week (July 1st) we go to a friend-of-a-friend-of-a-friend's apartment, which she is lending us for free for the month of July. It's an amazing situation, and I am so grateful!!

Have a Shabbat Shalom to all! Coming to you from a hotel in the neighborhood where my mother grew up (Murray Hill), Sarah Rachel Bat Tova.

sexism in hospital treatment, and 10-day update

I rarely reproduce other articles here. Usually if something strikes me as interesting, or a point of reference, I'll add a link to my writing, but directing readers to an entirely different article is not a common practice for me. Having said that, *this* one deserves this space. I can so totally relate to so many aspects of it. So interesting to me to think about pain in men being seen differently than pain in women.

http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

There is a [fairly minor] part where the author talks about retelling the traumatic story. All the people around you have heard it, possibly many times, in it's different aspects, but for you it's not over. You know you can't keep talking about it with the same people, but it still needs to be talked out and heard. That is why I started writing this blog eight years ago, actually.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

I wasn't going to write anything else for this blog entry, but as I said, the story just needs to be told. Not that there is a huge story coming or anything, but just that today is the first real downer-day (anyone remember Debbie downer? Just popped into my head. Google it if you don't know. Funny stuff!) since the surgery 10 days ago. I have been seeing very steady improvement from day to day. Today is actually the day I am going back to Tel Aviv to get the stitches out and have the first post-op check with the surgeon. And for some unknown reason, today has been awful. I am in so much pain, I even took Advil for it. I haven't taken pain meds at all with this, really. A few Advils the first few days, that's it.

Every time I get chilled (the weather is very slowly getting incrementally less hot... I hesitate to say cooler) I think a fever is coming on. It's not, but I still have the infection fear so deeply embedded in my conscience. I am past the time of post-op infections, so intellectually I know it's a pretty good guess that I am OK. But I always- I mean ALWAYS- have that lurking thing in the back of my head that wonders if This Is It. That "do I have another infection" ghost. It is my constant companion, all the more magnified after surgeries.

The pain I am having is normal, I am sure. My glute muscle is extremely sore, as is the whole length of my thigh muscle, as well as the raw-feeling joint. I know that things were cut and lots of work was done in that joint, and it's going to hurt as it heals. Until now I had been feeling improvement every day. That, to me, was extraordinary. I'm just disappointed to be in so much pain today. You can imagine. 

Another complint, if you could indulge me? It is hard to stay asleep at night- I am a side sleeper... usually right side because for eight years now the left side has been the bearer of surgeries, and is sore and off-limits to lean on. Now after surgery (as well as before to a certain extent) the right side hurts and does not let me roll onto it. I hate back sleeping, so I wake up after having turned myself over and caused myself pain- either side. I wake up tired and not wanting to get out of bed. Today I just didn't want to deal with the pain. I came back to bed after I ate. I'll get up soon to get ready to go to Tel Aviv.

It'll be OK. I know. I am just so sick of hurting, though. So. So. Sick. Of. It.

Thanks for being here for me. I don't say that often enough.

Bearing scars, but doing well

One week after surgery!

I'm mostly walking without crutches. It's totally incredible. Comparing this to my two other arthroscopic procedures, in neither of them I was walking this quickly. Yes, it hurts all the time still. I'm only one week after major surgery, after all. But I am feeling strong, and feeling that I am healing every day. *That* is not to be taken for granted! There is still strong pain- surgical pain. The incisions still have the stitches, my muscles and thigh joint are very raw still. But I feel strong, and I can walk on both legs. Today I mastered going up stairs with alternating feet each step (like you do all the time), instead of bringing both feet to one step, then the next, etc. Amazing. Most painful are the incision spots and muscles.

Also the joint is popping out of place a lot. I was warned that that would be the case because there is no labrum (cartilage cup) holding it in the socket. The end result is expected to be that the joint pops out of the socket regularly, but I won't have pain. I can put it back when it pops, it's just kinda oogie to think about. In practice it's not a big deal. That is, if it doesn't hurt. That is what remains to be seen.

I am going back to my surgeon on Thursday (in Tel Aviv) to take out stitches and talk about physical therapy. I am going to push for hydrotherapy- physical therapy in a therapeutic heated pool. It works for me well, I had it after the other arthroscopic procedures.

I sometimes feel that it may have been wiser to skip this procedure and just go for the hip replacement. That is what is suggested for a calcified joint (osteoarthritis), and that is what I had, a completely calcified joint with no cartilage at all. That way I could have avoided yet another surgery. I am not sure why my surgeons thought this was the best thing to do for me, but I guess that after they went into the joint with their instruments, doing a job to save the joint made sense. They are confident that it will get me out of pain. I hope they are right. I just wonder if they were prepared then and there to do a hip replacement (which they weren't- it is a totally different surgery), if they still would have opted for this repair procedure anyway.

I had one very bad experience there with one of the nurses. You'd think that in a private hospital that wouldn't happen, but wow, I am still paying the price for her callousness.

For 18 hours after surgery, I was extremely nauseous, vomiting, and had a migraine- a very bad reaction to having been given straight morphine. That being the case, Robert was in the halls a lot looking for nurses to administer anti-nausea medication. There weren't many nurses around, and he had to ask often because they didn't do it the first time. I was in an awful state. There was one nurse who was particularly cold to us.

She had me pegged as a whining patient with my husband whining for me. (If she only knew me....)

At some point in the afternoon the physical therapist came in to see if he could help me to get up and moving. I was vomiting, I said no, I just can't.

A few hours later he came back with that nurse. It was time to get me out of bed. But I was still nauseous and had a splitting migraine. I told her I just can't. I have a migraine, and I'm vomiting. She said "I haven't seen you vomit all day". BECAUSE YOU HAVENT BEEN AROUND!!!!! It was Robert who kept giving me clean towels to barf into and wipe my face with. Did she really think that it would be fun for me to make up a story of how awful I feel?

I then said that I have the catheter, and I just can't manage it all. I couldn't manage using the bathroom all the time, I felt I still needed the catheter (half day after surgery here...).

She then said "so we'll take it out". And in two seconds she whipped it out. I screamed. She said "what? That is how to take out a catheter". I have news for you- that is NOT how we take out a catheter. I've had a catheter at least 10 times in my life, and never did this happen.

Somehow I managed to get myself up and onto the crutches (the pictures from the previous post), migraine and all. Only then, when she saw that I gotten up and was walking did she have new found respect for me. I told her I have a terrible migraine, and only then did she give me a shot for that. The shot worked, the nausea and headache abated, and I turned a corner at that point. 

Right after that my dear friend Miriam came in to visit me, and we had a lovely visit.

That whole catheter experience left me with a whole other problem, not related to the thigh surgery. Yes, I am going to write this up for the hospital on their "quality questionnaire". It just makes me so upset that these things go on- regularly- in the hospitals, no matter how hoity-toidy and private. I am so sick of it. I have had so many surgeries, there should be something written in the chart that says: 

"this patient is sincere. If she says she isn't feeling well, she *really* isn't. She's been through hell and back, cut her some slack. Believe her. Eight years ago some nurses in Soroka hospital didn't believe that she could possibly be in so much pain, and nobody gave her antibiotics. Those nurses, 8 years ago, said "she's just spoiled, she doesn't need the pain medicine"

(that really happened, btw). 

The next day she almost died. 

Smile at her, it helps her heal faster."

That stuff doesn't go into charts, though. The patients just have to bear the scars.