One more surgery scheduled. . .

[jbeany]

Glad your home and made it out ok jbeany.
Don't they go over your meds with you when admitted? Everytime I am admitted they go over my meds. I also bring copies of a list of my meds I made in Word that I based off a hospital discharge sheet, just more colorfull.
 
I hate it when they put me on the diabetic renal diet at first. I always tell the doc so that they will change it.

Yup, I went over them.  And did it again with each doc who arrived.  I think the problem was that I was seeing the plastic surgery docs, and none of them would make changes to a transplant patient's meds.  The transplant neph was supposed to show up to check on me, but never did because none of my lab values ever budged at all, so there wasn't any real reason for a visit. My local GP took me off the statin, and I called the transplant doc to get clearance to make the change, but it never got updated in the transplant center's computer.  And the computer MUST be right, ya know!  Apparently none of them have ever heard the phrase, "Garbage in, garbage out."

I slept about 14 hours last night, only getting up for my medication alarm.  I should have plenty of energy today, now that I'm no longer running on constantly interrupted sleep!  I'm going to head to my craft room and make more bags to sell.  I don't have to walk to do that!

[jbeany]

Two week return appointment up date - the rearranged parts all look pink and healthy!  3 more weeks before my final return visit, and hopefully an end to daily dressing changes.  My sliced up thigh is finally healed enough that I can start back on my treadmill, at least at a walk. 

And now the count down to fall, and the last surgery to restore my tum to a normal shape, hopefully minus the divot and plus a belly button!

[Chris]

That's good to hear jbeany, at this rate it seems fall will be hear in no time. If they can't get you a belly button, tattoo of one in 3D suffice?

[jbeany]

"3-d tattoo" ....hmmmm - Can you see me handing my date those red and blue paper movie glasses before we head to the bedroom?   

[Jean]

jbeany, I am so glad that part is behind you now. Whatever will you do with yourself when you no longer have to have tests run all of the time and back and forth to the Dr. so often? You will be lost for sure, LOL.
Yay for jbeany!!!!!     

[jbeany]

I swear on all that's holy, the next person who tells me I just have to learn to be patient had better be wearing really, really good running shoes.
 

The skin graft took.  The donor site on my leg is doing reasonably well.  My doc, however, has decided that the earliest he could possibly do the final revision is January, not the 6 months/October surgery he originally talked about.  He's convinced that I'll "be used to it" by then, and won't want to take the risk of surgery on immunosuppresants anymore.  Well, I've been living with the giant hole in my gut for 9 months now.  I may not have to bandage it anymore, but even with the skin graft, it certainly doesn't look or feel any better to me.  The excess skin that shifted to both sides still is uncomfortable every time I roll over in bed.  I'm still disgusted enough that I don't want to even look in the mirror when I get out of the shower.  Since there's nothing but the thinnest layer of skin over the site of my new kidney and pancreas, I'm going to have to wear some kind of elastic brace for protection every time I leave the house.  Oh goodie - a whole summer in what is essentially a nylon corset.  Not that I'd leave the house without one anyhow - without some kind of binder, there's no way to hide the incredibly weird shape I now have.  I'm still overweight, but instead of round tummy like I had before the transplant, I now have a huge hole surrounded by 4 bulges that have shifted so far to the side I look square in the middle.  I've had to buy new clothes, since anything that isn't baggy around the middle sinks into the hole, and just makes me look even stranger.  I feel like a freak. 
I'm also running out of time on my 3 years before I lose my transplant med coverage.  I need a job with benefits.  Desperately.  I've been on disability now for over a decade.  I have no recent qualifications that would help me get a decent job, so I need to go back to school to get updated training in something, most likely paralegal certification.  I live in Michigan, with an economy that has tanked so badly that I'll be lucky to get any job, let alone one that will have insurance.  I'm terrified that SS will cut off the disability before I can even get a job that will pay enough to live on, let alone pay for tuition for school.  I can't leave where I'm at to go somewhere with better jobs, either - my gram is here, on hospice, and doing a long, slow slide to the end, and I'm the only family she's got to help her.  The nearest school with ABA approved paralegal certification is 3 hours away.  I can't move, and how the heck am I going to commute in Michigan in the winter?  I was honestly thinking that Gram would be gone by winter (Sounds horrible, but she's just not doing that well, and as miserable as she is right now, she desperately wants to go.) so I could make enough at craft shows and working for cash in my friend's gift shop that I could pay for winter tuition, and a move closer to the school - and now, I'll be spending January and February with the surgery mess and the necessary rehab, instead of having it over and done with by Christmas.  Auuurrrrgh.

Okay, I know, I know.  I need to look into online classes and student loans and kidney patient scholarships.  I'm just feeling stuck and frustrated because I can't seem to get anything to work out without clearing a dozen hurdles for every step forward, and I keep hearing that Medicare clock counting down in the background.

On the only funny note so far this week, the surgeon gave me a nice lecture about never exposing my skin graft to sunshine, since the thin skin has no way to protect itself.  Oh, yeah, right.  I can't stand to even look at myself in the mirror.  Break out the bikini; let's go to the beach and frighten small children!

[cariad]

So, he's trying to wait you out, keep delaying the surgery bit by bit until.... what? You decide "Boy, I've just become so attached to this hole in my stomach, I couldn't bear to part with it! Thank you, doctor, for treating me like a child who cannot make my own risk assessments."

I am sure that surgery after transplant does come at increased risk, but I've now had two (three if you count dental surgery) and here I am, continuing to vex doctors with my refusal to have horrible complications. The first surgery I had post-transplant was only 6 months after the fact, and it was an open biopsy, which I wouldn't exactly call essential if it is really that dangerous to operate on the immunosuppressed. And you better believe that they immunosuppressed patients to within an inch of their lives back in 1976, so the risk was probably even worse.

I would demand that that doctor give you the surgery as soon as possible. You received a transplant to get as much normalcy as possible back to your life, and this sounds important enough to you that he should honor his original word.

Thinking of you, jbeany. This sounds really hard.  (But your post made me laugh - I love your sense of humor.)

[Run8]

jbeany thats great. If you can remember i had all the same problems with pancrease leaking. And after getting opened up three times , and finally getting the it fixed, I'm stuck with a huge divot, i do have a belly -button, but it is on the left side of my stomach. Never would have thought of palstic surgery.

[jbeany]

Never would have thought of plastic surgery.

Didn't anyone suggest it?  I'm not talking about lipo or a nose job, here.  I just think we should be able to look mostly normal.  I can live with a big scar.  I'll even manage with no belly button if I have too.  If it wasn't fixable, I'd learn to deal with it, I suppose, but if there's a solution, why not fix it?  My mental health and self-esteem should be a consideration, too.

Plus, if I don't get it done now, and wait until I'm past the Medicare 3 yr deadline, then it becomes a conveniently preexisting condition, and insurance won't pay for the repair.

[Run8]

I'm with you on the mental health and self esteem jbeany.