I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jbeany on March 24, 2010, 04:52:19 PM
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My skin graft is scheduled for April 13. They are going to cover the giant gaping wound the transplant complications left behind. Finally! It's been ready to be grafted since the end of December, and it took this long to get the paperwork, scheduling and pre-tests done. I had my pre-op appointment this morning in Ann Arbor, almost 5 hours from home. $100 in gas and lodging blown for a 20 minute appointment to hand me a folder of information about skin grafts, confirm that I would be spending at least week in the hospital while the skin graft seals in place, decide which thigh I want cheese grated, and to have me sign the consent forms. Honestly, they couldn't have mailed all that to me and called me on the phone? Yeesh.
I am looking forward to not having a red, disgusting hole in my gut, though. I'm tired of twice daily dressing changes, and looking at the giant divot every day in the mirror. I currently look like I've been attacked by a killer clown wielding an ice cream scoop. :P If all goes well, I'll at least have skin over it again, even if I'll still have the divot for another 6 months or so. If everything heals nicely with the skin graft, then they will go again within the next year, and slice me apart and pull the hole edges back together. They could have done that without the graft, but since the wound has been open so long, my risk of infection for the major revision would have been very high. With the graft first, when they do go in for the final plastic surgery, it won't be on an open, weeping wound. Much less chance of any nasty, hitchhiking bugs coming along for the ride.
And hey, I get a free tummy tuck out of all this in the end. I still don't know if I ever get a belly button back, though!
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Good luck with everything!
Troy
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Oh my, what a palaver! I so hope that everything goes well for you! Keep us all posted, OK?
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jbeany, you are so incredibly courageous! Not that we have much choice, but I really admire your get-to-it, do-what-needs-to-be-done attitude. I told my husband about all the stuff you've been through and he regularly asks me how that girl from Michigan is doing. When I tell him this latest thing he'll be bummed. Need that wound fixed though for sure. :cuddle;
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Jbeany, what an amazing woman you are. It just makes me want to cry thinking about what you still have to go through. I am glad things are moving forward. I just hate that it has all been so complicated for you. On the flip side, I am thrilled your kidney is going strong. Keep us updated. You know how much we all care :cuddle;
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Best wishes to you! :flower;
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Good Luck jbeany.
I understand about the pre-surgery folder stuff. since am dealing with that now for my knee. Mine had me do test that now have to be repeated. I was rushed to get those test done when I didn't need to since they need ekg, blood, and something else withing 30 das of surgery.
The drive you had sounds like a pain besides the dressing changes. Hope you got a lodging discount if it was by the hospital.
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Sure hope all goes well for you jbeany. At least you will be rid of the "gaping hole"
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Made me laugh with the clown comment hehehe, that's an image for a good nightmare! :rofl;
You are so tough and I hope you get through this just fine. You really deserve a break, but look like it's going to be a challenge for a bit longer.
Hey who needs navels?
:cuddle; :cuddle; :cuddle;
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Made me laugh with the clown comment hehehe, that's an image for a good nightmare! :rofl;
Goofy would have smacked me, wouldn't she?
Ahh, but there are things that have made it sooooo worth it. Like my latest A1C test result - 5.1!
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Made me laugh with the clown comment hehehe, that's an image for a good nightmare! :rofl;
Goofy would have smacked me, wouldn't she?
Ahh, but there are things that have made it sooooo worth it. Like my latest A1C test result - 5.1!
Hahaha yes, she would have!
That's fabulous about the A1C - wooo hoooooooooooo!! :yahoo;
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Belly buttons are over rated anyway lol. Wishing you the best.
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Good A1C jbeany, that is what mine is also now.
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I had no idea you were living with this hole. They really ripped you a new one! I hope all goes well for you. I'm amazed you have kept this so clean everyday with no infection. Congratulations! You did it girl!
Best wishes! :pray;
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:kiss;
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Cross your fingers for me, everyone. I'm headed downstate tomorrow for the surgery on Tuesday. I'm supposed to stay at least 5 days in the hospital, so I won't be online for a while.
I'm hoping the only thing I nearly die from this time is boredom. Excitement is vastly overrated!
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( I just changed this post since I had pasted something by error here.)
Excitement is definitely overrated jbeany. I'll be thinking of you all week. :grouphug;
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Hiarious! But, unfortuneately, true. Same here in Oz.
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Hope all goes well jbeany. If it's not the hospital, it's the trafic that get's yah before the boredom can kick in.
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OMG I could just here Susie's comment to your Clown and the icecream scoop analogy.. :rofl; good luck bean we will be praying for a good turn out. No belly button no more dust collector..one less thing to keep clean... :) .
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Ahh, home sweet home! My hospital stay was pretty much completely boring, which is exactly how I wanted it. I had to do 4 days of strict bed rest, only out to use the commode, so my butt is completely numb. A few more days and it would have died of lack of circulation and fallen off. . . but no such luck for now. The skin graft set well, and I just need a follow up appointment in 10 days to take out staples and see if it's safe to stop bandaging it. The donor site on my leg is on fire like a bad sunburn, but only when I'm moving, so not too bad to deal with.
I did spend some of my time banging my head against the wall from sheer frustration. They started me on a combination cardiac wellness and diabetic menu for meals. I told the dietitian that I didn't need either - my cholesterol is so low now (LDL of 48!) that I've stopped the statin meds, and the new pancreas was working perfectly, so my sugar is under control. They did manage to change the diet setting in the computer - today, when I was on my way home. They never did manage to update it that I wasn't on the statin, so they brought me the pill to refuse each and every night, right along with the multivitamin they decided I had to have, with the iron in it that makes me throw up. I just kept refusing to take them, and each new nurse just kept acting confused. And the diabetic diet planner in the computer system cracked me up with every meal. Diabetics are supposed to average 50 carbs per meal. I stopped eating bread or drinking juice for the most part ages ago, so I would never mark enough carb choices on my menu selections. The computer would read that, and pop out random menu selections to fill the carb count. I got some of the strangest things - saltines with breakfast, and 3 servings of peaches for one lunch dessert!
The most exciting thing that happened all week was the transport team getting the wheels of my stretcher stuck in the elevator flooring, and listening to them swear in rapid Spanish when they couldn't get it to budge and kept pinching their fingers trying to wedge it loose. ;D
Other than the usual idiot hospital policy frustrations, it wasn't too bad. I got lots of sewing done for the next craft show, watched lots of cable that I can't afford at home, and finished 4 novels. Now, I'm off to sleep in my own comfy, non-plastic bed. I'll be back over the next few days to catch up on all the posts I've missed!
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I'm so glad your butt didn't fall off as that would have made you kinda off balance... :sir ken; Time for you to resume normal operations and quit lazying about! Seriously, though, I know it has been a long road for you, and I hope that now you can heal well and enjoy your life again. :cuddle;
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Jbeany, you always make the best of the situation you are in. Most of us would be moaning and groaning, but you were sewing and reading! You are an exceptional lady. The things you have been through the past few months would have brought most of us down. You make us all stronger just by your example. How are you feeling? Sending good wishes and healing thoughts your way. And a little love too! :cuddle;
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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.
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Good news, jbeany. Aren't hospitals wonderful places to leave?
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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!
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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!
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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?
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"3-d tattoo" ....hmmmm - Can you see me handing my date those red and blue paper movie glasses before we head to the bedroom? ;D
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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!!!!! :bandance; :bandance; :bandance;
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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.
:rant;
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!
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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. :secret; (But your post made me laugh - I love your sense of humor.)
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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.
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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.
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I'm with you on the mental health and self esteem jbeany.