post surgery... 23 days

So I meet with Dr. Morris on Monday the 15th. He says that things are going well, but my levels continue to fluctuate. He isn't too worried as my body continues to adjust with such a surgery. I sometimes forget how big of a deal this is as I feel so great. My swelling has gone down in my leg, so that is good. I had a clotty substance in my drain bag last Thursday, so I paged the Radiologist on-call. He wanted me to come in and so he could "flush" the bag. He attempted to flush it, but the clotty substance wasn't clearing out. He thought that my drain line needed to be bigger, I was like "whatever" I just want the thing to work. Sooo, for the third Friday in a row I check in at Clarkson and get a "procedure" done. This was just like that week before. They gave me medication but didn't put me to sleep. I was able to tell them what my issues were and that I had starting having some abdominal pain. They said that there was some fluid collection and it should be drained. I normally overreact but they were glad that I called. Again, I was under medication for less then an hour, I was actually still able to meet Dougherty for lunch. Mind you Lollz was there, but we all love Lollz!!

I was given a prescription so that I could flush the line myself. I went to three Kohll's pharmacy's today, and on the final straw, when I was about to lose it, I was able to get what I needed and was able to finally head home. When I get home I notice that fluid had collected around my belly again. I just decide to rest and take it easy. If it doesn't get any better or I don't feel relief tomorrow I will check in with someone... at this point I don't think that it is at the worrying point.

Going back to work at Goodwill a week from this Tuesday. I will be doing the exact same job, but only at 30 hours. So that means no health insurance. I will be getting paid less money, but I am bored and need to work to pay for COBRA. I am learning that this is a vicious cycle.

To end on a good note, I got a letter from Coventry that they have approved the Pancreas Transplant. I know that a lot of people didn't realize that I also needed that organ as well. This will not magically take away my Diabetes, but it will give me more freedom AND keep Kace the Kidney very healthy and live in me a lot longer... or so I hope. (Still waiting to hear from UNMC, but if insurance says 'ok', UNMC should be calling Monday or Tuesday!!)

Checking in...

So I go to meet with Dr. Morris on Thursday at which time he says, "Oh shit. That is big". Really? Where is your poker face? He claims that I have fluid built up around the Kidney that needs to be drained. So, I schedule an appointment with radiology on Friday morning to have a tube placed in my belly and have a bag collecting fluid. The PA that was working me up stated that this "should" help the swelling, and it will remain in until it is done working. People who know me know that IS NOT the answer I wanted to hear. I plan. I like knowing what the hell is going on. I am awake during the procedure, but high as a kite, I mean I was asking questions and saying, "is that normal? should that fluid be so red? Is this working?" I know they had to be annoyed with me. The entire procedure last about 30 minutes and I was in recovery no longer then one hour after they began. I felt better and seeing fluid come in the bag did make me feel better. I was able to see progress. Tomorrow, Monday morning Aunt Kim and I have our 3 week follow up. If everything is ok with her, she is all done! Like done with this process... just will need to follow up with her local physicians. I am sure that my levels are still "adjusting". Like I have, and the only thing that keeps me going is that the Kidney continues to work very well, and all levels Kidney related are "wonderful".

I will check in when I have something new to report. So, since I get bloodwork tomorrow, I am sure something will be different or need to be looked at even further. Been kinda a bitch all weekend, little tiny pity party... I am sure in a few days I will be back to whatever the new normal is. My Mazel of the Week is going to Tena Hahn for bringing me 3 seasons of, It's Always Sunny In Philadelphia". I will have a week of laughing! Can't wait!!

Keep it real everyone and be thankful for the little things in life... I am learning to do so....

Week 2.... Terrible 2's!!

Ok. Let me give a quick rundown of week 2. I get bloodwork on Monday, and my "anti-rejection" medication level is way too high. This does happen after a transplant, I am still in the "try and figure it out stages". I return Tuesday to see if it had gotten any better. Well, on Tuesday they see that my Phosphorus is way too low. So what do I do? I go to the 3rd floor of the Lied building and get 5 hours of a Phosphorus Transfusion. Worst thing about that?? The 2 hicks I had sitting next to me. I mean H I C K S!!! So, I am sitting there and when I stand up, I notice my whole left side is wet. The nurse thinks I spilt my water, when I tell her to take a closer look and notice what color it is. "oh" she says... my incision leaked. Not a little, but a lot. I panic. She and the surgeon both said that I must have had a "puss bubble" under my skin and it just leaked. Again, normal after surgery, but odd for 2 weeks post transplant. So, I realize I am just a medical mystery!! I get home Tuesday and just relax and visit with the girls as they just returned from Miami. Wake up Wednesday and again go for bloodwork at UNMC. Again, I get a call a few hours later. Phosphorus went up from 1.1 to 1.5... WTF? that is all?? but whatever. Anti-rejection is still at 22... should be in single digits, again WTF? So here is where the fun begins. I go to take a shower and notice that my left leg is twice the size of my right. I panic. I call the nurse who says, if you notice any changes, please call back it may be a blood clot. Those that know me know that I notice any teeny tiny bit of change, I freak. SO, about 20 minutes later, ten minutes after 4 I call and the "on call" coordinator says to go to ER, again it may be a blood clot. So, Patti picks me up and takes me to the ER. We get called back a lot sooner then some of the other people waiting. Look at my leg, and there were no poker faces there, it was bad. So, they start an IV, get a vascular ultrasound, and one of my Kidney to check for a blood clot. Guess what?? I am a medical mystery. No fucking blood clot. Not sure why it is swollen. Not sure what to suggest. She would go ask the surgeon as he is upstairs doing an emergency Kidney Transplant, and the Fellow (Dr. V) just left on a plane to get a Liver and Small Bowel. HOW COOL?!!? So I go back to the doctor today at 11 and see if I am collecting fluid or what the F is really going on.

Hope everyone has a great day. BTW, Kidney is working. Levels for the Kidney are "outstanding"... I was told that this does happen after surgery but usually not 2 weeks out. So I am REALLY NOT worried. If this is the worst that happens to me, I can deal with ER trips and all that jazz. I mean I feel so much better then I did 17 days ago. But whose counting!!??!

YouTube - Stand Back Up

YouTube - Stand Back Up


I have been having a mini pity-party today... I listen to this song, cause I will stand back up. Probably tomorrow, or maybe not for a while, but I will beat it!!! People who know me know how I look at music as a way to express what I am feeling, so when everyone asks how it is going... this pretty much sums it up!!

Love to everyone!!

Goodbye Rubber Tube... and other stuff

Tomorrow (Nov 5) I am going back to the hospital to get my "tube" taken out. I again will be "under" and hopefully will bounce back over the weekend. This is out patient so I will be home in my bed tomorrow night. I check in at 7 and if everything goes ok hope to be home healing by 4.

I went to Goodwill today to learn that my job no longer exists. Budget cuts. They are going to hire 2 people at 30 hours and eliminate my full time position. I think it won't work out in their best interest, but I don't make that decision. Hopefully other programs will be available when I am cleared to return to work. Otherwise I have to look at this as an opportunity to grow, learn, and move on to yet another adventure. Sigh. I also went to appeal the Social Security decision to not allow me to collect disability. Well, I learned that it takes about 5 months to get anything or any type of income. So Patti suggested we try unemployment. I just never ever thought of myself as one to collect such a benefit. Eye opening. So I really hope the Schrack's don't mind me... don't seem to be going anywhere any time soon.

Pancreas update... I called the nurse and she said that she is waiting for the insurance company to approve it. Could you just imagine if they said no?!?! WTF??! :) she hopes to hear from them sometime tomorrow, so my phone won't be ringing right away for a Pancreas. Lets just pray and hope that it comes within my current healing period so that I don't have to start a new job and then leave it within a few months.

I am still healing from last week. My belly is still really sore, so I will check in with the doctor tomorrow to assure everything is ok, which I am sure it is. It continues to be tender and sore as the Kidney sits in the front towards the pit of my stomach.

So, I sit and watch Old School for the 3rd time this week with two of my FAVS... Hannah and Bailee. I mean who can be sick of Old School, its a classic!! Love to watch them play with Noah and scream like kiddos!! Anyway, I have learned to re love Old School... You're my boy blue!

I will update again this weekend to let everyone know that the rubber tube/prom night dumpster baby is all gone.

Week 1...

Well it was 7 short days ago when I received such a wonderful gift. I even named the Kidney due to not wanting to call it "my" Kidney, but not always having to call it "Aunt Kim's". So I came up with "Kace" K=Kim and Tres (3 in Spanish/3 Kidneys) mush em together and you get Kace the amazing, hard working, pee producing Kidney!!
So let me recap the last 7 days. I get a Kace on Tuesday. Wednesday I am walking around, slowly but surely. Thursday I am feeling the pain, but knowing that it will all be worth it shortly. Friday I am given a pill box and get a training on meds, why I will be taking them, and what they will do to protect Kace. I get home on Friday afternoon and when I lay down in my bed, in my room, I breathe a nice big sigh of relief. Saturday I go to UNMC to get my last transfusion of an anti rejection medication and get my last IV removed. About 11am I get a phone call from a nurse saying that my Phosphorus is "toxicly low". Now people should go back to older posts and see that only 5 days PRIOR I was to AVOID Phosphorus. FML!! So another medication was added. That's ok, I only take 15, what is one more?!? :) Now we come to Sunday. VNA comes out for me to do paperwork, and this little 5'2" nurse comes waddling in and won't stop talking about good I look and how well I am moving around. I give all that credit to Aunt Kim, she took care of this thing of 29 or so years... ha ha. I mean this lady went on and on and on. After a few minutes I was like "thanks, I get that you haven't seen someone bounce back, but I'm pretty stubborn and I am also not very patient". She looked confused. She'll learn. Monday, nurse comes back to do blood work and to make sure that everything is going ok. My blood pressure was up, but everyone thinks that is due to the pain Kace has been causing. Just a lot of pressure in my front which will go down in time, or so I hope.

This brings me to today. I have reflected a lot this week and have noticed so many things I wasn't able to do one short week ago. I can walk more then 10 feet without stopping for air. I can also walk up the stairs and down the stairs without having to stop for air. I can pee. I can pee. I CAN PEE!!!! I realize that unemployment is not for me. I miss my job and the people I worked with. I am lucky to have so many people care for me. I am lucky to have my mom, sister, and Schrack family help me during this transition. I just need to practice some patience and heal. Kevin, I am healing... back the F off!!

So I spend most of the day browsing the Internet, but can't find anything interesting. Any cool sites people recommend?? I have done FB til I can vomit... guess most people I am friends with work, because nothing ever happens during the day. :)

I am good. I feel so much better... thanks for everything and I will probably add a bunch of crap that no one cares about over my healing period. I am boreeeddd.....

End Scene

What a week we have been through. Tuesday morning came around and I was roaring and ready to go. I once again double checked with Aunt Kim to make sure this was ok with her, and once again she said "of course". We both checked in to registration and she was called up to "pre-op" about 20 minutes before I was. When we reached the 2nd floor she was directly across from me and we were able to talk for a few minutes while having our final check over. Nurses checked everything. IV's were inserted. Surgeons stopped by. An Anastegolist came by and discussed risks. Then my OR nurse Erica Rock came in. She is my best friend's sister in law and with her as my nurse, and her sister Kim's nurse, I felt in amazing hands. When Erica came in, I handed her my camera and told her that I always wonder what goes on in an OR, and she was totally willing to take some snapshots. (Those can be found under my Facebook account) I will probably add a few on here for the followers that don't have a FB account. The pictures were amazing, and showed me a lot of interesting information.

Kim and I were under for no more then 4 hours. I remember be woken up and Erica telling me that we were done, and heading back to recovery. It was over. I peed. I was feeling like hell, but I knew the gift was given, and things were going to be only improving. When people ask me how I feel, I tell them that I feel as if I can see more clearly. There isn't so much "fog" in my mind. I am more alert and have a lot of normal color back in my face. I was able to have visitors that evening and even had the long waited Diet Dr. Pepper from the fountain. My poor Aunt Kim wasn't snapping out of the medication as easily as I was. She had nausea and was moving slower then I was. People say that the donor does have a harder time because they are healthy up until the time of surgery and her body is like, "what happened to my buddy, the other kidney?" As where my body is like THANK YOU!!! The stress and pressure have been taken off of us, and the new guy can take over.

On day 1 post-op we were instructed to walk around and sit in a chair. Kim was great about following directions and walking the hall a few times. Me, I went for one long walk, took a 20 minute break in Kim's room, and my walk back to my room was walk 2. Loopholes. Some things about me won't ever change. People asked about the pain or discomfort I had been feeling, but the worst part was well, moving. Getting up and down was horrible. But due to my freaking out about everything, I was worried that the incision would split and I would get a hernia. But 5 days post-op I still worry about that. Probably will for months.

So, here is what has freaked me out since this all happened. The diet I was on prior is completely flipped. Everything I was told to avoid, I have been instructed to eat. And, I have been told to drink a lot more fluids so my Kidney doesn't get dehydrated. My medication which went from 2 pills in the morning to about 16 pills. No lie. Medication has to be taken 12 hours apart so my Kidney doesn't get rejected. I can't lift over 10lbs til 2011... I can't drive for 3 weeks... I think I will lose my mind before either of those deadlines occur! :)

I really really want to thank my family and friends who took time out of their day to come and check in with me. Thanks for Aunt Kim and Uncle Jeff (the donors husband) for giving me a bit of her. I now can feel how much he loved her from the inside of my gut. ha ha... My sister, my mom, my brothers, my support system... everyone has been amazing and i know they will continue to support me. And now with a new Kidney, support me for many more years.

Pancreas?? Well, that is like a phone call away. My nurse will be calling me to assure me I am on the list and she said that there are only 4 other people on the Pancreas transplant list. So this may happen sooner then later. This Friday (11/5) I will be going back for outpatient to have my Dialysis Catheter taken out. The following week I will be calling to have all signs of Dialysis removed from the Schrack house.

I will keep people updated as the journey is just starting a whole new chapter!!

less then 44 hours...

Remember when you were a kid and your parents pepped you up for such things as vacations, or Christmas?? Well, my vacation/Christmas is about here. I mean when the date of October 26 was scheduled, there was still months to prepare. There was plenty of time to do everything and hell, maybe the doctor's would finally tell me that all of this was a big joke... well with only hours away, it is not a joke, and it is going to happen. People ask how I have been feeling, and I really think that I am both emotionally and mentally prepared. I have been seeing a Kidney Specialist since high school, and I guess my mind has finally accepted it and is going to allow it to happen. Please don't get me wrong, I am freaking the freak out... but in a calm way. I know what I need to do, I know what is expected of me, I just need to let other people take control and I need to "heal". The next few days are going to fly by. Aunt Kim is already in town and we both have some appointments to go to on Monday. She seems so calm and prepared, as where I am still hoping she wants to do this. I know she does, but damn that Catholic guilt.

I know that I have thanked everyone for everything, but the prayers and support cannnot be thanked enough. I am getting a second chance at a whole new beginning starting Tuesday about 1pm. My family has been so supportive and very direct with me. I appreciate that. I know that a lot will have to change once this surgery takes place, but my god, I am so ready to have a new beginning. "The New Megan... Now with a new and improved Kidney". I really am at a loss for words on how to thank everyone. People are just paying so much forward.

Officially I am done working and hope to go back in a few months. I NEED and MUST give myself time to "heal". I need to look at it as a short term break that may lead to greater things... So this is when all the donations and fundraising money will come in to use. It will help pay my insurance (cobra)and medication as it is being prescribed.

So tonight I do my second to last dialysis treatment and have only two more sleeps... I pray that everyone stays well for the next 40 some hours... and this happens. People who know me, know that I still question all of this. I mean I know this will happen, I just am super cautious. To a fault!!! Here we go....

5 days....

Today I got an MRI to make sure that my elevated hormone numbers were going to be ok. Well, they are. They looked at the pictures and said that nothing is out of normal for someone in my "condition". After the MRI I then proceeded to go to the ground level for "inpatient dialysis". So sweet Dr. Plumb comes down, checks on me and says, "she'll run for four hours"! WTF??!??! At this time it is 10am and I thought everything would happen fast... so I let Lolly know to come back about 1. Well, by the time the port is placed, and the x-ray has been taken, it is after noon. So now I won't be done until after 4pm. Guess who the only person in America is without a cell... my mom! So now I can't get ahold of her to tell her to not wait for over 3 hours. Poor Lolz... when will she learn??! :)

So I am done with Dialysis for today and will be going back to clinic tomorrow and saturday. They hope to get all of the solution from the MRI over the next two days. Looks like Tuesday is still a go....

OMFG!!

Ok, so people who know me know that I always think that something will go wrong. My flight will crash, there will be a tornado, hurricane, etc etc. Well, we are 8 days away from the "new megan, now featuring a fresh kidney" and here is the "hick-up" (NOT REALLY I AM OVERREACTING)... this part is for real, but there shouldn't be any issues for the surgery on Tuesday. They are just taking "extra measure to make sure there isn't any problems for surgery"

Ok, so I have a "high level" of something that some women will get when they are in Renal Failure or due to a lot of medication. I get that, no biggie. Well, the OBGYN and Plumb and Transplant Team decided that I needed to get an MRI prior to the surgery... now try and keep up... There is a dye that they put in your body when you get an MRI. They need ALL of that dye to be out of my system prior to surgery, and with the current form of Dialysis that I do, that wouldn't happen. Sooooo.... Thursday I am getting an MRI, then I report directly do inpatient dialysis at Clarkson where they will put in a "temporary" port in my neck. I will then do Hemodialysis which is the "in clinic form of dialysis". I will do this form of dialysis for 3 days so that ALL dye can be out of my body. Plumb believes that everything will be just fine and doing the test is just double checking everything.

Tomorrow (Tuesday) I will be meeting with a financial advisor and taking a "life after transplant" class. Can't wait for that one! LOL!! My last day at Goodwill will be on Wednesday due to the port that will be sticking out of my neck beginning on Thursday morning. I want to save everyone from having to see the Frankenstein version of me! :)

I have had this port before, and it isn't that bad... but just so damn close to surgery puts me in panic mode. Patti and I have laughed about this all weekend... it was at about 4 today when I lost my mind. Thank god Plumb called and talked me down about 5pm... he gets me!!

So here we are... 8 days out!

Really is happening...

I received a phone call from the nurse today. She set up my "pre-op" (puke in mouth) appointments. Next Tuesday I am to have a History and Physical at 10. Have a "class" about life after transplant (Lolly and Patti MUST attend) at 11. Then following the class, a "financial counselor" will be coming and explaining the cost of prescriptions, etc, etc, etc. (Donations are still be accepted at Security National Bank) I am no longer worried about begging for cash, bc Cobra costs 525 a month. That is a lot of money!!!

Ok, so next Tuesday I meet with the pre-op team and we get going... Patti made a funny, "so this is really going to happen?" Hell yes it is... I have a Shamrock Countdown in my office... that is serious stuff!!

I am fortunate to know the nurses that will be working on Kim and me... they are fans of me and my best friend's family. We will be in very safe and capable hands!!!

OK, feeling hyper and excited! Waiting for the big black cloud to reappear!! :)

Lucky #13

When I go to the casino, I always play 13, 14, 18, 21, 25 on the Roulette Wheel... 13usually brings me luck. Maybe I will force Lolly to play tonight!! Can't get much worse?!? LOL.

I met with a nurse for the last time on Monday. It was weird. I was saying all my good-bye's and getting "good luck" "check in"... it just sounded so odd to think that I won't have to check in with them (God willing). I asked what to expect during my recovery, and they all think that I will do just fine. I will be in the hospital about a week, of course i will be sore, but other then that, she was so optimistic. That freaked me out the most!! She said I will need to get a blood draw every M W F for 3 months. Then, every M TH for like 6 months. Then, once a week for a year. Then, every month forever. She told me that I won't have to see Plumb anymore, but just the surgeons for the next few months to make sure everything is working ok. Just hearing and learning the freedom I will/might have is awesome.

The nurse did talk a lot about taking anti-rejection medication every 12 hours on the dot. She said if I miss some or any doses that the kidney might start to think, "what the F am I doing in this random body". Note to self - don't miss meds!!

There was one downer on the week... I got a well deserved speeding ticket and have to attend STOP class all day Saturday. I tried getting out of it, but I was going way fast and needed some bad luck.

Sure I will be keeping everyone up to date as I learn new stuff. I am actually paying attention to what they tell me from this point forward!!!

19 days

Well, we are 19 days away from Part 2 of the Kidney Adventure. Let me do some clarification. I am tired. I am soooo soooo tired. I try so hard to do things, keep going, etc... but in the long run, it just wears me out for a few days. I have decided that over the next two weekends I am going to rest. I am very low on FMLA time at Goodwill and am trying to work my 32 hours a week. On November 11 I will have used up my 12 weeks of FMLA for one year, and I will be "Medically Terminated" at my current position. My goal is to come back to Goodwill within 3 months so I can "bridge" my employment. Bridging my employment will keep my tenure and well, that's about it. I have been there 5 years, and I want my picture on that damn wall!!


With such a short time left before the surgery, I am not sure what people can do to help. I am really just working and relaxing. I check in with Lolz and Patti everyday because they too are on pins and needles. My goal is just to stay strong and healthy enough for the 26th to still be the day. My luck, I get an infection and this has to be postponed. I am prepared for that! You should be too.

Patti will be running the Blog and Facebook for a few days after the surgery. I don't think that I will be doing status updates for a bit. Email me any questions or concerns you may have... I just know that people have a lot they wonder, and I can try to answer to the best of my ability.

Hope everyone is well and enjoying the nice fall weather... I am sure there will be some updates as I REALLLYYYYY begin to panic and freak out at every little hair, itch, pain, etc.... 19 days. I must keep calm. (VERY HARD FOR ME!!!!) Love to all.

Holy Last 24 hours....

Yesterday, Monday, I went to the dialysis clinic to drop off some paperwork and leave a sample to make sure I didn't have an infection. I nurse says to me, "how have you been feeling". I don't lie and tell her like crap. I am tired all the time. I have no energy to do anything. She ponders for a moment and takes my blood pressure, 84/64. She is shocked to see how low it is, then being the smart ass I am, says "well it was too high a few months ago, make up your mind!!". She ponders again and says, are you too dry? (too try means that the dialysis is taking off too much liquid therefore my blood pressure lowers and I am more tired). I suggested we weigh me and see what the scale says... well, lets just put it this way, I now have met the weight requirement for the Pancreas Transplant as well. Exciting? I thought so. Sooo.... I call my coordinator at UNMC. I tell her the great news and she says to me.... you know you can wait to have your Kidney Transplant with your Pancreas one. Huh??? I was trying to clarify what she was saying. What it came down to was you can have one surgery, one recovery, knock it all out at one time. Sweet!! But then you have to look at both sides...
If I got the KP together it may take up to a year for both to happen. Can I, the most impatient person wait that long for a "maybe"? The KP would only be one surgery that would be over and done with on one day... like. But then I start calling Plumb and every nurse I know. Here is their side... A living donor kidney is much more healthy. If you wait for a KP Transplant the Kidney may have been in a deceased body for up to 48 hours. So that would hinder the health and well being of the kidney. I mean I have spent the last day going back and forth on such a topic. Some people say its up to me. Others say just wait, you won't have to have your aunt go under surgery, and you can just wait the few months it may or may not take. So then I analyze and analyze again and again and again. Do I save Aunt Kim the surgery? Do I wait the time it may or may not take to have a Pancreas and Kidney Transplant?? I am 32 years old... who makes these decisions?? I do.

I spoke to Plumb. I love him, not in a weird way, but he gets me. He knows I am a quitter, that the current dialysis isn't working as well as he had hoped, and he knows that with time I would give up. (that is a correct statement) Some people are fighters, they will do Chemo for years, they will let their hair come and go. They will do whatever it may take them to keep going, but I am being honest, I do not have that drive. I spoke to a friend today that said, if you were given a gift on 100,000 dollars, would you wait 6 to 8 months to maybe a year for a gift of 200,000 dollars?? God no. I would take the money and run. When I gave this analogy to Plumb he laughed and agreed. I talked to Aunt Kim and she is on board... When I get her Kidney on October 26, at about 9am, I will start to regain the energy and stamina I will need for my second surgery of a Pancreas Transplant.

My main fear of the entire thing was running out of sick time and vacation or using too much FMLA, where will money come from?? Hell, Kidney Klassic II... bigger and better!!

This was a really tough decision to make, and with the help of all my friends and family I now realize that I have been given an amazing gift and that I should not reject it or feel as if I "owe" something in return. I promise to live a long and healthy life... so you suckers are stuck with me!! Any problems, address them to someone who cares! :)

Hope that you are all doing well... enjoy this time of year, something about fall and the changing of the leaves makes me feel at peace. (OMG.... that was so F'in cheesy, wayyyyyy too much medication!!)

My Bad....

My bad. I haven't written in a long ass time. I really didn't want to tell people a date for the surgery, but as of 3:26pm on Friday September, 24th it is official.... Aunt Kim and I are having a Kidney Transplant on Tuesday, October 26th. Can you FREAKING believe it?!??!? Some people wait years for this to happen, and I have been waiting less then one year. That just is such an amazing statement to say, less then one year and someone is taking weeks out of their life, AND giving away an internal organ!! Holy Crappers!!

The KC Klassic was so much fun!! The golf course was amazing, and I am blessed to have so many people that love me from near and far. Those KC girls know how important they are to me, and I need to say thank you time and time again!!! Looking forward to KC Klassic 2 when we need to raise money for the Pancreas Part of this adventure.

I am still working at Goodwill, only (barely) 32 hours a week. I have ran out of sick time, so money is starting to worry me a bit. I know that with all of the fundraisers I am ok for a few months, but I still stress... It's what I do, and people who know me, know I overanalyze... A LOT!!! I did have to "quit" Blue. My body physically couldn't handle it anymore. Blue has been great to hold my job and let me return when I am ready. Thanks Blue!!

Other then that, I really do NOTHING. I work, come home, lay down and watch TV. I then get up, set up dialysis, then go to bed... I have mentioned time and time again I look forward to the time I once again have enough energy to socialize with people.
I feel fine, just tired. On the weekends I usually sleep over 12 hours, and still do NOTHING other then sit on the couch.

I did snap on someone the other day. I came to an after work event, had my cranberry juice with a lime... all about the look! :) I sat, I socialize, I wanted to pass out. When I got up to leave, she said, "whatever, you can stay its only 5 o'clock"... I literally told her to go F herself. For everyone that knows me, knows that I push myself to the limits... so when I say to my friends I am "tired" or "i need to go" please just let me. Please know I have pushed myself enough and when I say its time i go, Its time i go.

Anyway... I don't know how the surgery will go. According to ER and Grey's Anatomy Aunt Kim will be in one room, and I will be in another. To tell you the truth, when I was hearing all of this information I was singing in my head. I was not listening. Hopefully we will review the information prior to surgery. Aunt Kim should be in the hospital for about 3 to 4 days, as I will be there for one week. Recovery for me should be 4 to 8 weeks. I plan on being back to work in 2 weeks!! :) HA HA HA - - KIDDING!!

Other questions people may have... where will I go after hospital? Back to Schracks. My mom and sister will have to come there to help out. I need my bed and my things. Will I still have the tube? Yes, I will have the tube in my belly for some time to assure the transplant took, and I am going to be Ok. What can people do to help? I would love it if my aunt and her family had some food. Gift cards. Gas Cards. Prayers. Support.

Oh, I also wanted to mention that I am running out of FMLA. I use 16 hours a week, and since I have been hospitalized 3 times my 12 weeks are coming to a close. My supervisor and HR department have been amazing, but so people don't freak out, I may lose my job. I of course don't worry about not being rehired, but I sure will miss the insurance. Yes, yes, I have medicare, but 2 forms of insurance are better then one!! :)


Anyway... I am done. I will be posting more often as the surgery takes place, and when I am whacked the F out, I will nicely ask Patti to update!! Again, thanks for thoughts and prayers. Thanks for all the well wishes. I wish I was able to thank everyone one by one, but that just won't be happening. Please know that all of your thoughts and prayers have been noticed and so appreciated. Please send prayers and well wishes to Kim Mittermeier as well... she too is playing a crutial role in my success. Well, she is the only real reason this is happening!! Thanks Aunt Kim!! You are loved by so many people, especially me.

Hope everyone is well... give your kids hugs and kisses from Auntie M and tell them I will be visiting over the next few months... along with my third kidney!!! :)

M

Power of Prayer

I haven't always believed in the power of prayer. When my dad was sick I would pray and pray that he wouldn't suffer. He suffered. I was pissed. I prayed that my grandmother wouldn't die from breast cancer. She died. I was pissed. I have prayed for a lot of things in my life and some work, some don't. I have been so fortunate over the last year to be receiving prayer after prayer after prayer. My prayers have been answered, I have gotten an angel from 130 miles to the south of me... she has answer all our prayers. I now need all the prayers that have been coming my way to move to a friend of mine. Colon and Liver cancer has struck her brother-in-law and Chemo will be starting soon. Please give all the "Megan Sharpe" prayers to "Andrew Somora" as he will now be needing them. Andrew's sister-in-law is a very close and dear friend of mine. When I received a call this morning asking for prayers, I started immediately. Prayers do work and everyone needs to pray for Andrew, his wife, and his two young sons. God works in mysterious ways and I feel all the prayers we will be giving him will help him, like they did me.

Aunt Kim and I are meeting with the surgeons on the 19th... maybe more information will be given at that time!!

With thoughts and prayers, Meg

Still truckin...

Just wanted to check in and let everyone know that I am still trucking right along. I am still doing dialysis from home, and so far it seems to be going really well. I am tired, but I had three solid weeks of me going non-stop. Yesterday I did a 4hr test that was able to see how well my "membrane" is working with solution in my belly. I have no results from that, but hope to hear by the end of the week. My goal is to be able to continue doing dialysis from home as long as humanly possible.

I also wanted to send a thanks to all the people who sent me or my Aunt Kim a message. It is amazing how many lives have been touched from this whole experience. I know that people say that they have Guardian Angels and that there are people up there watching over them... but this experience lets me see that hands on. People do love, people do care, and it is our job to thank them!! Even with a lot of bad news recently, the little joys in life make it worth waking up each morning!!

Hope everyone is well, I am excited to go with Aunt Kim to the "donor clinic" and see what else I can do at my end.... Hopefully a date will be scheduled over the next month or so!!

KC Kidney Klassic

Step one... Omaha Kidney Klassic, Check
Step two... get healthy and find a donor, Check
Step three... raise some more money for my surgery and my aunt's surgery... almost check

The KC Kidney Klassic is being held on Saturday, August 28th with a 1:30 Tee Time. Each golfer will need to pay $75 with a portion of that going to the course, and the other part to expenses of the upcoming surgery. Omaha people, the name of the course is "Winterstone" and hotels would be best in Liberty Mo.

Angela Kreps is someone who would be able to answer questions in regards to this... or you can go to the Sharpe KC Klassic Page on Facebook.

What a joyous weekend... still on cloud 9. And please don't forget to email or thank my amazing Aunt Kim Mittermeier via Facebook... I do not think I can tell her enough how much this means to me and so many other people!!!

Video

I wanted to thank everyone for the thoughts, prayers, and congrats!! It has been an overwhelming 24 hours. I can't even begin to express how much love and happiness I feel. My brother Kevin had recently made a video via youtube.com, it expresses the feelings my family and friends have had over the whole day. July 24, 2010 was "Happy Kidney Day Megan Rae"... I can't wait for the next step in my adventure.

please watch the video... it is great http://www.youtube.com/watch?v=zCC5YGy0oSM

I will keep everyone posted, so much joy is happening in this part of the midwest... thanks Aunt Kim, you are loved by so many people, more and more each minute by minute!!!

Remembering

When I was 4 years old, I was a flower girl. I remember bits and pieces of the day. I remember the maroon dress. I remember being on the alter in the middle of everything. Guess I have always wanted to be the center of everything! I remember wearing that dress for months and months. I remember the tight bun that was on top of my head. I remember the first song I ever fell in love with, "I Love You" by the Climax Blues Band. It was the song Uncle Jeff and Aunt Kim danced to. I remember the cake must have had at least 4 layers, with a ladder and with little "people" that I took home and played with. I bet to God that my mom still has those "people" somewhere in her house. I remember walking down the aisle and thinking how amazing it was to celebrate the beginning of a new life together. I remember the reception. All the dancing, all the drinking, all the family fun. The worst part of that day was when a 4 year old didn't catch the boquet, but I tell you what, 28 years later I have caught something much more magical, a Kidney Match. Last night at dinner I was given a "congrats" card. Huh? Inside were two of the pictures from that wedding so long ago, along with a "match". I read the card, I stop and think, and then begin to have racing thoughts... after a moment, my Aunt Kim says, did you see what fell out? It was literally a match. They were on the table, and I had no clue what they meant. No one smokes in restaurants anymore. Why were matches all over the table, what a safety issue. Ha! Not really.... it was for me to know, Aunt Kim was a match. And guess what, so is Uncle Jeff. I said, they were meant to be the perfect couple... they can save each other, and that flower girl from so many years ago.
I look at this as an opportunity to grow, to learn, and to get another chance. How do you thank someone for that?? There have been people in my life that haven't had the opportunity to fix mistakes, to mend bridges, and to start over. I will be getting that chance.

I can't say thank you enough to Jeff and Kim. They are giving me something that not many people can say, another chance!!! I love you both very much. I love your children too. I love everything about the last 24 hours!!

So, please come to the KC Klassic in August, we are now helping 2 families recover from a surgery!!

I love you all... M

Hi

Hi everyone. Thought I would check in. I am feeling a lot better after my "detox" or "flushing". When I was in the hospital I did Hemodialysis which was able to really clean out my blood and get my body back in better shape.

Today, the 19th I went to Clinic and had a blood draw. What this blood draw was for is to see if my BUN (a level I can't really explain) is too high or not. IF it is too high, I have agreed to get a "tunnel port" which means I will again go to clinic three days a week to have dialysis. I am hoping and praying and hoping that my levels are ok, and I can continue doing dialysis from home. It is just a lot easier and I love having some freedom.

I am about 8lbs away from my "goal" weight. The "goal" I have is to be able to be on the Kidney and Pancreas Transplant list so that my wait would be years shorter. I swim and/or do aerobics in the Schrack pool which I think is helping, but the scale is lying. Well, my eating habits aren't the best right now either.

I feel optimistic and don't seem so bitchy to people. My mom wonders how long that will last. One day at a time... I feel like that big black cloud over my shoulder might be heading south and some good news will be headed my way... god damn it, i deserve it.

So when I get down to my "goal" I will be calling the clinic and add my name to the KP list... chew gum and eat Popsicles!! Swim and park far away. Baby steps.

Oh, again, don't forget the KC Klassic!! I had another hospital stay last weekend... we will need some golfers! ha ha!!

Thanks everyone!! M

Next Step(s)

I have been released from the hospital. I am going to go home and continue doing what I have been doing... I am going to do dialysis from home for a few days, and this Thursday I will check in with Plumb and see how I am doing. The thing that bothers me the most, is that one person says, "this isn't working" another says, "let's try this" then even another will say, "what do you think?!?". It is at that point I stop listening and make sure Patti and Lolly are around.

So, lets break down the latest information.... I came to the hospital on Friday with extremely high levels of Calicum (15), normal is about 8. Due to those high/toxic levels, they inserted a catherter in my neck and performed Hemodialysis, which is where the blood is literally taken out of my body and then cleaned. Hemodialysis was performed for two days and got be better, back to my old self. Last night I was hooked up to the PD machine, the same one I use at home. The doctors said that nothing looked bad, and the best option(s) would be to continue as I was before, and if numbers get bad over the next few days, I would have to plan the next step. The doctor said, "just prepare for the next step to be going back to Hemodialysis".

Well, we wait and see. Hopefully I had a flook and it will fix itself, but I am prepared to meet whatever happens next. I mean come on, a Kidney has to be close, right?!?

August 28... KC people... be there or be dead!! :) Anyone who wants to golf, contact Angela Kreps via Facebook or email. She is signing foursomes up!!! Again, thanks for support and prayers.

Mazel!!

hospital stay... day 2

well, last night i had another port placed in my neck. The beasts of medical professionals completed such a task, in my bed, in my room. Anyway, this port is short term, and placed it in order to get my levels "back to somewhat normal". Due to PD Dialysis not working as well as they hoped, they put me on Hemodialysis. Which is the form I did at the clinic, 3x a week. They said that the PD way wasn't cleaning my blood as well as they had hoped, and needed to solve the problem quickly. They did. Once I was on the machine for an hour, I was already feeeling better. Today was another day of Hemodialysis and I "ran" for 4 hours to help clean my blood and get me back to normal.

The reason the believe that PD isn't working is becuase my "membrane" isn't working like it should. What that means is that when the fluid "dwells" in my body, it isn't cleaning the blood as well as it should. Hence being tired, weak, and sick as hell. This has been happening for a few weeks, but my body had just stopped being able to fight. So when I did the "old form" I felt much better and was able to keep food down. I guess this is a crossroads that I have come to, and I hope answering questions will be easy. This does get tiring, this does become frustrating, but I care about too many people to stop fighting, I just need decisions to be made much easier...

I should be able to get out sometime this week. Tomorrow night, (sunday) I am going to complete the PD Dialysis. The doctors will then take blood Monday and see what may or may not have happened. We shall see.

Thanks for the prayers, and thoughts, I really am greatful to have such wonderful support.

starting over... again

I am currently checked in at Clarkson Hospital. I haven't been feeling well for a few days, and haven't been able to keep food/liquids down. Nothing would stay down. I called a nurse and gave her my symptoms and I was instructed to check in to UNMC, then they were like, Clarkson... well I am checked in on the Clarkson side and will be here for a few days. through the weekend definately.

The reason they believe I have been sick is because my "at home" dialysis isn't working. Or it isn't working as well as they expected. Options? Go back to dialysis at the clinic. I so just want to get better, have the surgery and ATTEMPT to live a normal life. So, this afternoon a neck port was placed. I am going to do the "old" form of dialysis to make sure I can start to feel better. ASAP.

I will keep people informed as I learn more information.... Don't forget, KC Kidney Klassic is Saturday, August 28th... come and help out with the next round of bills.


Love to you all... M

Kim, sorry, I am very emotional and couldn't call... that is why Patti did. I'll check in tomorrow. Promise.

Settled

Well, I am sure a lot of people have been wondering what has been going on, and all is going just fine. I promise. I moved in with Kim and Bailee, and they have made me feel very welcome and loved. Kim threw the smack down and reminded me that 15lbs isn't that much to get on the Kidney and Pancreas list. Let me explain this comment. When you are Diabetic and you have a Kidney Transplant, they encourage and like to do a Pancreas one at the same time. If you are Diabetic and have a Kidney transplant, your Kidney won't last as long if you don't get a new Pancreas. Yes, yes I will still be Diabetic and will have to take insulin, watch what I eat, etc, etc, etc... but I should be able to live longer with both transplants. I hope that makes sense. I am still 15lbs over my "goal weight" for the KP Transplant list, (Kidney/Pancreas). The doctors have tryed a new "fluid plan" when I do dialysis overnight, so far it has been going well. I have a bit more energy and am able to work without dozing off. There was some time a few weeks/months ago that I was noticing feeling bad again. I was tired, I was weak, and was just like "whatever happens happens". But thank goodness I am feeling much better and am back to my kicking ass and taking name.

So my goal over the next few weeks/month is to drop the 15 lbs. get on the KP transplant list, and wait on the average of 1 year. Dr. Plumb and the transplant team have told me that the KP list is 6 months to 1 year... again, I need people to remember that I am just now admitting that all of this is really happnening. Please remember up until they placed the port in my chest on the 24th of February, I didn't think they were serious. I really have been and still am living in denial. It isn't that don't want to lose the weight, or it isn't that I don't want the transplant. In my jacked up mind, I still forget this is R E A L L Y happening to me.

Everyone has been very supportive and I need people to yell at me and remind me that this is the only options we have.... must lose 15lbs!! **Also I am on a renal diet... so it isn't like I can just drink water and eat carrots, I have to have a lot of protein and random options** We can spend another day on what a renal diet is. It sucks!

Hope everyone is doing well, and I guess the KC girls are having a "Kansas City Kidney Klassic" on the 28th of August... Now all the KC people can't give me BS excuses!! We are coming to your town... mark it down!!!

Peace out!! Megs

try to answer questions...

I know I freaked everyone out yesterday, but I too was freaked out. A lot of people are asking questions that I really don't know the answer to. I will answer what I can and if you need more info, please just ask.

everyone has 2 Kidneys. Both of mine are shot, so therefore I need a transplant. A living donor is someone that is "compatible" with things other then just blood type. Dr. Plumb won't even tell me my blood type because it has nothing to do with the donor. People can live with just one Kidney. People donate Kidneys all the time, and I guess it isn't even that major of a surgery in the doctor/nurses eyes... like transplants are done daily. Isn't that just amazing?!?

My insurance will cover the donors hospital stay. There is a healing process of what I think is a few weeks. So in my big, kind heart, I would obviously help out with those expenses. Maybe your job would be so gracious to give some extra time of vacation, I mean you are saving someones life. :)

I am not sure if any questions were answered, but those are 2 of the major ones I have been asked. Again, when/if you contact the nurse(s) they too can assist you with questions. Also, feel free to call them with any types of questions... that is why they are paid, to help patients and the people who love the patients.

Thanks for the support. Thanks for the pep-talks. Thanks for everything!! I really am ok. Promise!!!
-

Calling in all favors

Well, went to the doctor this afternoon. Dialysis from home isn't working that great. When the doctor turns to me and says, "do you go to church?" I reply, "No, should i be praying hard or something?" he says, "Nah, a lot of people have guilt and maybe they will want to give me their organ". when that came out of his mouth, I did puke a bit in my throat. So let me break this down... time to start putting it out there. If you feel like donating a Kidney is something you want to do, I no longer will say "no". If people want to help out, this is whom you would need to contact...

Please contact Connie Lykke or Gina Rau @ 402-559-5000 (M-F 8a-4p). They are donor coordinators and will be happy to speak to the possible donors. They will send out information regarding the donor process. If they live out of town, the toll free number is 800-401-4000. They can send them out speciman kits that have speciman tubes which they can take to a local lab to have drawn and fed-ex back to the Med Center.

Dr. Plumb said that there is "barely" any Kidney function left, and the reason I have been so tired, and why I have been so weak, is that the dialysis isn't working, and my body is beginning to feel like it did in January/Feburary... and that my friends, that sucks. So really, the only thing I am waiting on is a donor.
I am putting this out there so people don't freak out. I am not going back to the old form of dialysis. If I don't get a Kidney, or if this new way doesn't start to work, that is just how it is going to be. Matter of fact. I tried, I did all the steps, I am not going back to the way it was. I have come out a better person for trying, but I am tired and although some people fight for years and years and years, I am content with having tried at all. And so should everyone else!!

I still have hope. I am sure a Kidney donor will magicially appear, but until that time, keep fingers crossed!!

Again... love you all and thanks for the support!!!

Holy Crap

I know that someone can expect support. I know that someone can expect help. But my god... this weekend was a total and utter success. I really really can't say thank you enough to everyone. But I can say thank you to several people.

First, the "little helpers". The little helpers helped make the golf course a great success. People came from Kansas City and were our "shot/drink" girls. I am sure the course wasn't a fan of that, but man oh man, rumor has it that people were having FUN. I mean that was the point of the golf, for people to have fun!! Cara, Melanie, Kathy, Amy... thank you for keeping me calm as everyone was checking in. Thank you for knowing which ticket went in each bucket, and when I messed up, you fixed it. Thank you for getting booze and getting the golfers loaded at hole 12. Vanessa, Cara, Ali, and Ang... thank you for doing the same. You helped with booze on the course, and my god, you were good at it.

Dawn and all of the other "go to gals"... I love you all. If it wasn't for all of you I am not sure Patti would still be here. She would have checked out mentally and not have been as calm, cool, and collective as she was all day on Saturday. Everyone had given so much of their time, their energy, and even finances to help make this event a success. And it was. All of the ideas, donations, and support was seen from everyone in attendance and if people were lucky enough to have friends like all of you, this world would be so much more fun! :)

Sarah Rock... my goodness! you were the hit of the shit show! you were able to sell items and get money like it was your full time job. OOC!! it was just so fun to watch you work the room and watch the crowd eat it up!! You have a heart the size of New York City, and I am honored and fortunate to be your best friend!! Patti said it best, "everyone needs a Sarah". I am glad I have you!! You never cease to amaze me and everyday with you is a wild yet exciting event!

Farley... you too are amazing! you scored SO MANY DONATIONS! I am not sure how this would have come together without all the people you know! The koozies, the pop, the jello shots! You were there every step of the way, and you will continue to be there as long as you are needed. I will always need you!!

Kim, Hannah, and Bailee... I have to thank each one of you, well, for being you. Kim was there ALL day. The girls were super troopers and worked the door, and didn't even complain about helping. It is sweet, because I know they would do anything for me. Hannah scored some goodies and Bailee even had fun! Those Schracks are amazing people and I literally thank god everyday for having them in my life!! Not only did they help me, they helped Patti and my mom as well. And please don't worry, the Schrack's will be getting a lot more of me very soon.

Then of course I have to thank my amazing sister. You always see those signs that say, "god made us sisters..." blah, blah, blah. I am just so happy to have her as my friend more then anything. She listens to me. She calms me. She just gives me whatever I need, whenever I need her. Hell, she even cuts watermelon for me when I am too tired. Not many sisters do that!! She had a vision and a plan. She wanted there to be an event where fun was had, drinks were consumed, and money was spent. Success. Total and utter success. My family is awesome. I love every single one of them, but my sister, she is just one of a kind. She will give and give and give til there isn't anything left, then, then she will give just that much more.

The day was a success. A lot of money was raised. Now, now we just sit and wait. We wait for a Kidney. We sure hope that it comes sooner rather then later, but now is better then never. I am ready. I am physically, mentally, and emotionally ready for the next step in this adventure. I am ready to go forward and to move on with my life. I am ready to say, "i am just fine" when people ask. I am ready to help someone else raise money. I am just tired of hoping and wishing. I just want this to end in the most positive way possible.

Finally, finally I need to say thanks to Sabrina and Eddie. I was able to hold back most/all tears until the end of the evening. I love you both, and although I can say thank you over and over, I really can't express how much your presence meant to me and the whole clan. Bern and Ray are loving it!! I promise!!

And so we continue....

Mixed Emotions

Well, this is it. Tomorrow is the big day, and to tell everyone the truth, I have had so many mixed emotions over the last few hours. It started at dinner. My amazing cousin from NY surprised me and my mom and flew in for the Klassic. When we were at dinner tonight several mentions of our parents, who have both passed kept coming up. Such things like how Aunt Bernadette would have loved the Marylebone bar. We mentioned little things that my dad from Brooklyn would have loved about this weekend, and also how much he would have hated to see why we had to do this. I then thought about other people in my life that I love and have loved. All the people that donated time and everything else to make this such a great success. I started to miss even the people that aren't part of my immediate family. The people who would have loved to help. Who would have worked the grill and would have spent a lot of money to help me out. When people are sick, they get to say "good-bye" they get to tell people how much you care, or how much you love them. I don't say it enough. I don't tell people how important they are and how thankful I am to be part of THEIR lives, let alone part of mine. Opportunity passes by so quickly, I wish I was better about recognizing it.

I know people may not believe this, but I haven't cried since this all began. I didn't cry when I got a port, when I got surgery, I just was pissed!!!!! I was mad at everyone and no one could bring me back up. Tonight, tonight I cried. I am thankful for everything that has been done. Donations are massive. Desserts are plenty. And people won't stop giving. It is like a "pay it forward"... my goal is to get a new kidney along with a new start.

Tomorrow is going to be amazing... so much has been making me think about all those people in my life that are no longer with us. Not just my family, but everyone. This weekend makes me remember to say "I love you" and "thanks!"

So to all of you... I love you and thanks for all you do to keep me moving forward!! Lets have a great time!! (god knows it is going to be memorable)

Omigod you guys...

It is hard to believe that it was about one year ago when my sister, mom, and I went to the Med Center to learn about "kidney transplantation". Back then I was still in denial, and thought they were kidding around. Then in October when I went to NYC with my mom and sister, I was so damn tired, but I blamed it on the travel. I still as in denial. When Christmas rolled around, I was beat. I was tired, weak, and barely able to function. I would literally doze off at work and hope to god I didn't snore in my office. I still thought that there was so many other things to blame my exhaustion on. Too much work. Not enough sleep. Doing too much. Guess what... it was just my body slowing down. February 24, 2010 changed everything. I went to Clarkson, had a port placed in my chest, and the rest is history. I started dialysis and this adventure of Kidney Transplantation.

It has been a long few months with a lot of changes. I started dialysis in a clinic 3 times a week. I then had surgery that placed a rubber tube in my belly. I now do dialysis every night while I sleep. I have been placed on a transplant list, and I just sit and wait. People are supportive. People are helpful. And this weekend, this is a big weekend. My amazing sister has planned a very very impressive dinner and fundraiser. She has taken a lot of time out her life and even all the other people who have assisted. People are just amazing and I again am thankful.

I will once again go over the event so that people get what is happening. It is like 2 fundraisers in one day. Golf is at 1:30 for all of those people who have signed up to play. For those who won't be golfing, they can come to a Sloppy Joe feed from 3 to 6... after 6 we will be having music and lots of great donated auction items.

Again, please please come and help support me, and the amazing event that will be taking place. I can't stop singing the song, "Omigod you guys..." its like I can't believe it is here and the weather should be amazing!!


Knights of Columbus Hall 4323 Washington Str, Omaha, 68107 (map quest info)

thanks again and again and again.... I will post pictures after the weekend and especially after the big move!!!!!

What I have learned

Here is a list of things I have learned over the last 120 days or so. This is in NO specific order, just how I am spitting them out.

I learned that a "fistula" is ugly and makes your arm fat due to expanding your veins. I learned that I can be a better patient if it means NOT having to get one of those. I learned that surgery is painful. I learned people are patient, I am just not included in that statement. Recently I have learned the importance of being organized. Doing Dialysis from home is hard work. Making sure everything has a place helps getting set-up. Documentation is crucial. If you don't document, you forget and making things up won't work either. I learned that if you "tug" on your port from your belly, holy hell that hurts. I also was reminded that getting a port out of your boobie isn't fun either. I again remembered that I really hate idle chit chat. I don't care why you are at dialysis, I can only assume it is because your Kidney's do not function properly. I learned that I can scream at Dr. Plumb, tell him totally inappropriate things, and he still likes me and wants me to feel as best as I can. I did really learn that for a Kidney patient, it is best to order a hamburger and onion rings when eating out. I am not used to that, I miss my grilled chicken, no mayo. I don't like to mow my mom's lawn, but someone will get to it tomorrow. So rather then waiting for "tomorrow", Patti and I do it on Monday's. I don't have as much energy that I did in March or April. May has brought a light to my eye that reminds me I am sick and will need to rest more then I want to. I figured out that Phosphorous and Potassium shouldn't be consumed by a Kidney patient. I also don't know what that means exactly, but they tell me to avoid such things. I learned that I have saved a lot of crap. I am packing for the big move, and I probably have hundreds, I mean HUNDREDS of pictures from weddings past. I did find one of a couple that isn't even married anymore. Really?!?!? I have also learned it is ok to let things go. I can still hold a grudge, but physically, I don't 'need' so many things. I just want more then you. Fact. I have learned that I love summertime. I love the College World Series. I love going to work at Blue. I love that I can bitch and bitch and people still love me. Well, they at least still talk to me. I have learned that I am lucky to have a lot of people in my life. Dougherty is my "go to gal" and she will listen and listen and listen and never interrupt. Thanks Champ! Today was a good day. I wanted to let people know all the things I have learned and all the things I will continue learning.

I guess I am just ready for the big dinner/party. This event will take off so much stress from me, my family, and the entire wing they will name after me at UNMC. (kidding, I just feel like I should have a wing) Please remember, if you are not golfing, you can still come to the dinner (4323 Washington Street). If you can't do that, and want to make a donation, (Megan Sharpe Benefit, 7210 Sun Valley Dr, Omaha, NE 58157)

9 days til the Klassic!!

Memory Lane

I am taking a trip down memory lane. Some people may love this... others may not care. But I needed a little "pep me up" so this is what I came up with.

I sure complain a lot. It is something I have done and will always do. But what a lot of people may not know about me, I care a lot too. I always worry about how other people are doing, and what has been happening to them. I really hate, I mean, HATE that people are now worrying about me. Worrying about how I am doing and all sorts of other issues. So guess what, I am going to take come time and look back at all the good things that have been going on, and the things that will be happening. Over the last few days and weeks I have been doing a lot of reminiscing about college. Gina sent my sister an email this week, and at the end it said, "miss ya buddy". I laughed. I mean I literally laughed and remembered college. I remembered when Melanie, Kathy, Kyle and I lived in Roberta and how we would go get Big Mac's on Mondays for .99. It was a hell of a deal. On real good days, we would get fries and hot mustard. We had no worries and no cares. I mean we cared about what shirt we would wear with our black pants. We cared about what drink we would get at the Outback. Things were simple then. The first time I ever lived on my "own" was with Vanessa and Kristi. That was a hoot. Poor Vanessa. We once put her bed in the dining room because she never was home. We had a sheet that EVERYONE signed when they came over to "Village Ho". Again, we weren't worrying about anyone but ourselves. In the duplex we used to have party after party... Poor Gina got a MIP because someone answered the door when the cops knocked. Freshman fools. Again, our biggest concern was paying the fine. I don't think we even did that. I look back at years when the biggest concern was making sure we were able to get to class. Wasn't life simple then? The Beach house and the "Blue Party" (everyone wore Blue bc they were sad). Or that damn Mariah Carey song, "All I want for Christmas is you!"... that song still makes me smile.

Now with the magic of Facebook, I along with everyone else can see the professionals and adults we have become. People with kiddos. People with careers that I tell you what, 11 years ago, I NEVER would have imagined you'd be doing that. Times have changed, and now that people worry about me, I feel bad. Can you imagine, feeling bad because people care?!? The Kidney Klassic will be a great time for me to personally thank everyone that have been a part of my life and will continue to be in my life til someone other then me has bigger plans.

Now, here is another change that is happening in the life of Meggie. I am moving. I am moving in with my extended family. Some people may remember all the pictures, and the amazing people who would come to Homecoming in Maryville to see me, but would also bring down my parents. They are amazing. They have opened their home to me so that I can stay somewhere where I am able to keep all of my "stuff" in regards to doing dialysis from home. They are truly amazing people. I used to watch their daughters when volleyball was on Thursday nights. They lived directly across from my parents house, and when it was time for me to go home, Dave would say, "I'll take you home". He would open the door, let out the dog, and by the time Sable did her business, I was in the house. 18 years these people have been part of my life, and in this new adventure, I am thankful, blessed, and honored to be accepted into their home!!! I will be moving after the Klassic.... but very soon after.

I am feeling good. Am I sad? yes. Am I happy? yes. I am a bit of everything right now, and at this moment, I feel great. (check in about 30 min from now). I don't pray a lot, but that damn Serenity Prayer says it all. It isn't just for AA and NA. Just saying!!

Thanks again, I really can't tell you all thanks enough!!!

Financial Mental Breakdown #6

I think that I am a very giving person. I don't forgive people easily, but I usually can at least tolerate them, (except one person that I hate, and only my family know who that is...) I still hate her. So today, today I am having what I think is about the 6th financial mental breakdown of the month.

I give a lot to people, I come to their events, I do whatever I can whenever I can. Right now I have been going through a lot of emotional events so I am a bitch one minute, and am sweet the other moment(s). As people get older, they get sick, they have families, and they go on with their lives. I need to take time and thank the many people who are taking time out of their weekend to golf in an outing that helps me. There are over 100 people who will be golfing 18 holes and having a fabulous time. And to each and every one of them, I thank you! I thank you very much. I have a few amazing friends from KC MO coming up to help with shots, with selling raffle tickets, and supporting me at the time in my life I need the most support. I even have a friend coming from Branson. Branson is about 9 hours from Omaha. I am totally emotional when I think of how far people are coming to help me raise money. Erica came from San Diego. Vanessa from Branson. Cara, Ali, Ang, and others from KC will take a day away from their daughters, (all of them have girls only... 6 total!) Anyway, they have a lot going on, and people will stop and help me. As this is getting closer, and I am seeing how much people do for me, I can feel the love. I mean Kim Schrack has done more then I can even begin. Sarah R and Farley... those two are my everything! well, they are Patti's everything right now. Melanie ordered shirts and all profits go to helping with bill. What about Dawn from the Marylebone?? She has donated so many items, time, and ideas. If you need a bar to get your drink on, or an amazing burger... go to the Marylebone!! Amazing!!

I learned years ago from a supervisor that, "Crisis is an opportunity to learn". I have learned that people care, people love, and people support! This crisis in my life has given me the chance to realize how much people can love and care. I have also learned about who can't come and maybe for reasons I am unable to tolerate. But that is the selfish Megan speaking...

I really hope people understand I can't give like I used to. But if people stop and think about what I have done... coming to Omaha for a few hours and an event to not stock my kitchen, or give me new bath towels. This event is to help with the over 8,000 dollars the University of Nebraska Medical Center is charging me. Yes, I have insurance, but being a patient for over 20 years... and not affording them for all my life, it adds up. So far over the last 2 years alone, my hospital bill is over 6,000 and that doesn't include out of pocket expenses. Out of pocket which includes prescriptions, doctor visits, etc...

I again want to thank EVERYONE who will be coming to the dinner, the golf, and the evening of drinks. This is to help with the costs of this disastrous event that has currently taken over my life!

I can't say thanks enough

me again...

Thought I would take a few moments out of my day and let people know that I am feeling much better. I have been on antibiotics for a few days and that has helped tremendously. I want to thank everyone for their thoughts and concerns... I really am back to myself and am feeling better then I have in weeks!! I probably didn't rest enough when I went from one form of dialysis to another.

Other then being knocked down for a few days, everything else is going well with the new form of dialysis. I really just plug myself in and lay in bed. I am able to sleep fine and am able to walk to the kitchen in case I want a drink/snack. What happens is the machine fills me up with some fluid, and it works as a "magnet" to get all the toxins out of my body. It "dwells" for about an hour, it drains, and repeats that 4x throughout the evening. The machine is quiet, but loud enough so I know that it is working. I have a system set up, and am able to get from one place to another. It has been about a month and I am STILL following rules and procedures. I did have a fatty-mc-fatty Burger King sandwich today, but F it. I don't care!! :) I can "walk" it off. Funny thing, I literally can walk without thinking I am dying!! Amazing what 30 extra lbs does to someone!

Patti is getting ready for the Kidney Klassic, which is in just 2 weeks!! June 5, 2010 at Knights of Columbus Hall... 4323 Washington Street. She has told me that over 100 people have signed up to golf, and she hopes about 1000 people will come to the dinner!! PLEASE tell your family, your friends, your neighbors, and whomever else likes to help people in dire need!!It really is going to be a lot of fun! Many friends and family have been working really hard on making this successful, and all we need now is a lot of people to come and drink the beer and eat the food. It is going to be a great time for an amazing cause.

So once again, thanks for the thoughts, the concerns, and most definitely the patience to deal with me. See you all on the 5th!!

Checking in...

Sorry that I haven't written in a while, but the last week has been a very tough one. I have been "sick" and just not myself. I went to the ER last Saturday due to an infection in my catheter site. I was placed on antibiotics and since then, I have felt like crap. All week I have been nauseous and tired. Yesterday, which was Thursday I finally went to see Plumb and he doesn't know what is going on. I have chills, and feel feverish, but no fever. I can't sleep well at night, but during the day and exhausted. I compare it to how I felt before dialysis. Just bitchy and tired. But this time, I puke a lot and have no appetite. I am sure everything will be fine in time, but I just hating feeling "not myself".

Thanks.

I've made the cut!!

Well, I have made the cut... I mean I have been selected to wait on the official Kidney Transplant List. What this means is that the weight has been lost, the meds have been taken, and everything else they asked, I have done. We should go back a few weeks because for some reason I thought I was on the "list", but the nurse placed me on the 5th of May at about 4pm. So I guess by the year 2013 I should have a Kidney. UGHH... so far.

My nurse explained to me that the list doesn't consist of a "number" but rather a blood type. If I am "chosen" for a Kidney, they will have a few people that they call/contact. I guess you are able to deny the organ, or pass it. Really?? who would pass it up?? After talking to her, I guess people do pass it up. They don't want a certain aged organ or a certain race... etc. When you do get the "call" there are about 4 people on that specific list and they start from the top down.

I guess I can offically get the "call" at any point, but I won't be expecting it for some time... about 3 to 5 years. A lot can change, and you never know... I could get lucky.

Only a few weeks until the "Kidney Klassic"... so that is exciting. I had a dream last night that it was a bust. No one came and it was horrible!! I know that isn't the case, but still, that would suck!!

Patti is still accepting donations for the dinner and silent auction. Golf is very full, so Patti would love to have people come to the Knights of Columbus hall at 4323Washington Street. Dinner will be served from 3 to 6 and then people are more then welcome to stay and drink and have fun... again, contact Patti with more information.

I will try and do better about keeping people in the "loop"... I just don't have a lot to say about home dialysis...

the day after, the day after

Ok, last night went much better. When talking to Kelsie about my "pains" she thought that I was probably so stressed when I was sleeping the first night I never "relaxed". Obviously I was so stressed while I slept my bones and muscles were tense. DUH!!! I was stressed. I wasn't relaxed. Thank god I have friends that can state the obvious.

So the second night went much better. No alarms and no odd dreams. Well, I did dream about college. And for those NWMSU people "Gu" was in my dreams. We were at the Outback and her and I were bartending. All the people were the same... bouncers were the same, Spano, Zim... my god, what odd dreams to have... I guess my mind is racing a lot. Happens.

So my first delivery came this morning. I received a total of 11 cases of "goodies" to get my started. Every month I will get about 30 cases of "dialysis fluid" one case is used daily. I also get a few cases of "draining bags". A draining bag takes all the fluid that my body dismisses and in the morning I just dismiss it down the tub. I have to replace a "cap" on my catheter every morning. I need to have masks to not pass germs. A lot of bandages and other trinkets. HA!

So... I am already feeling better. I just need to relax.

Patti said that the golf is full. PLEASE PLEASE don't feel like you are going to miss out if you aren't golfing. There is also a Sloppy Joe Dinner going on at the same time that will be having a silent auction, drinks, food, and fun!! It is like she and all my friends are planning 2 events at once with a HUGE party to end the night!! Love you all, and hope to see you June 5, 2010 at the Knights of Columbus Hall on 4323 Washington Str!!

Ok... doing MUCH better and again, thanks for everything and all people are doing to help me keep my cool.

... the day after

Well, night one wasn't the best. I had to page the nurse because the machine said, "low flow". I didn't know what to do, so I paged her and she said that was ok and walked me through how to fix it. I plugged in right about 11 and paced around a long time. I walked to the bathroom and attempted to reach the fridge so I would be able to get popcicles. The cord wasn't long enough for that, so I just went one night without my "snack".

I was able to fall asleep after I talked myself down. Ha ha. I just had to remember this was new and after a few days it wouldn't be so freaky!! Did I sleep well? NO. NO. NO. I had several odd dreams. One dream consisted of my standing up and my catheter fell out. Another dream was I came "unplugged". And my favorite one was when the power went out and I was walking around in circles and got caught up in the cords. I am a freak!! The machine went through 4 "cycles" which include a fill, a dwell, a drain, and then repeat. This is all done in a 8 hour time period. The machine isn't loud, and once I get used to it, I don't see it as a problem.

This morning... this morning sucked! I woke up in horrible pain. I felt like my bones had lost all of its calcuim and strength. I like had to hug myself super tight so the pain would be less and less. That lasted for at least 45 solid minutes and I was like "what the hell is going on". The pain wasn't as painful as time went on, but I can still feel the tightness in my chest. I know that sounds bad, but I explained to the nurse that it was on both sides and when I move around I feel better. Someone said that maybe some bad fluids were pulled off and that is how I should feel. Well, I spoke to my bones and they loved that fluid and would like it back. Seperation Anxiety. Ha!

I know a routine will be happening soon.... the sooner the better. I just received a call from "Baxter" and they will be delivering 11 cases tomorrow. Please remember one case per day. So next month, I will be getting about 30. Where will it all go?!?

I say the Serenity Prayer a lot. My mom would be proud!!

Home Sweet Home

Well.... here I go again. I look at this as a new adventure, and this adventure takes place in my bedroom, (That's what she said).... Ok, the pictures are of tubing, the machine, the plastic bag that is the "solution". I will have 2 bags placed in me and then it will "dwell". What dwell means is the solution will go in my body and work as a magnet to get all the bad things out of my body. It seems to make a lot of sense when my nurse explained it, so I will try to get it out to all of you. There is a lining in our stomachs that will hold all the fluid and work as a magnet to get toxins out. It will place some fluid in my belly, sit there, then go out into a plastic bag. It will do this about 4 times over my 8 hour treatment.

I took the pictures so that people would be able to see what this machine looks like. For those that have spoken to me over the last 30 hours or so, people know that I am nervous and am kinda freaking the freak out. I hooked everything up. I plugged the machine in. I even put everything away... and for me, that is AWESOME!! I just wanted things to go in their "place" and have some sort of organization, sure hope that lasts.

Anyway, I will take some more pictures and have everyone see what things look like. I know this too shall pass, but last night I was laying in bed. I was thinking that was the LAST AND FINAL evening I won't have to be "hooked" up. I will be doing this every night until I get a Kidney. I mean, every night until the transplant. That could be 2 months, or 6 years. God, that freaks me out a bit.

I all I keep telling myself is that I can do so much more. I can come and go as I please, and not have to be somewhere so often.... There's no place like home sweet home.

Here is to hoping night one goes well. M

Stressing myself...

It has begun. I am stressing myself out to the point I almost want to not do Dialysis from home. I KNOW me, and I know that this too shall pass... but right now, at this moment, I am freaking the freak out!! I started training yesterday for "PD Dialysis". When the nurse was talking to me it all seemed OK, like this won't be an issue. Then... then she started talking about "sterile environments". She mentioned how hard you have to wash your hands. When you are putting the tubes together you can't have a fan on, you can't have a window open, and you have to have the door shut and nothing moving around. So that stressed me out. Then... then she started talking about everything I have to do before I can even "hook" myself up. I need to take a blood pressure, weigh myself, take a temp. Then... then I have to write it all down in a log. For those people who know me well, know I am not much of a "log" person. I never wrote things down in Weight Watchers and I NEVER NEVER write down my blood sugars in a "logbook". CRAP!! I know that this is a new normal, but for me being as lazy as I am, this could seem to be an issue. I guess I will just have to do it otherwise, well, we all know what the other option would be.

I will do another home training this afternoon and will be "doing a run" from home tomorrow night. Now I have to go to Goodwill and look for a table to place this machine on. I just have to chuckle and laugh it off...

Checking In...

I am just writing to ease some concerns. Due to my absense, a lot of people are checking in to make sure I haven't "lost it" or "stopped dialysis".

I usually have a lot to say and want everyone to know what is going on, but recently nothing at all has changed. I am STILL doing Dialysis at the clinic three days a week. I go every Monday, Wednesday, and Friday from 4 to 8. It STILL sucks and I hate it, but in 2 short weeks I will be learning how to do Dialysis from home. The month of April has been the longest month... or has seemed like the longest month. Nurses think I will be able to learn and catch on with the new stuff in a few days. Should be doing everything from home around the 1oth of May! Hooray!!

My wound has "healed" as best as it can. The nurses and doctors say that it looks good and I will just believe what they tell me. They are the professionals. I still have my port and that area is irritated and annoying. I guess I am allergic to the stickers they use, and since they are pulling them off every couple days, my skin could no longer handle it. I have some scabs and sores, but hopefully when the port is taken out, those will heal themselves!!

My hair is completely jacked up. It is all frizzy and is still thinning out... one of the nurses/doctors thought that "Heparin" was causing it. "Heparin" is a medication that I get during Dialysis, and although I won't be getting it as often when my treatment changes, I just won't be getting it as often. I guess a side effect of that medication is thinning hair and I guess I just have to deal with it. I reminded them that I wasn't OK with this answer and that they needed to fix it soon before I went even more bonkers then I already am. Another nurse thought it was stress. I didn't like that suggestion and I told her she was wrong. I am good at blaming other people for problems... so I blame the medication.

Other then that, nothing else is happening. Patti is still planning the Kidney Klassic and evening dinner. I want to thank everyone for their assistance and for helping out. My friend Melanie even made my favorites... T-shirts! I love T-shirts for a themed party... yes, I was in a Sorority... but come on, it is fun!! She wants people to wear them the day of the event and will be selling them all day. Isn't she creative and awesome?!? She will be selling them for 12 and all of that will help me with the hospital bills.

Another comment that yes, I am on the transplant list. I "could" (use that term loosely) get a phone call at any time that says "lets go". but i am being very realistic and know that phone call will not be taking place anytime soon. The waiting list is 3 to 5 years for a match of a dead donor. And if a living person wants to donate, there is a lot of time off of work. A lot recovery. A lot of money. Giving a Kidney isn't like giving blood... it is a lot more work and not something that should be just tossed around.

I hope everyone is well and once my new Dialysis starts I am sure I will have a lot to say along with a lot of bitching and moaning.

Dialysis Information/Lesson

Here is what the Catheter looks like when bandages are removed. Since I am not such a raging bitch, I wanted to take time and show everyone what it looks like. This picture was taken during my first dressing change. The "hole" that the tube comes from was opened a bit, and with time and patience it should close around the tube and allow me to do everyday things like shower. Amen. A shower. So the nurses told me that I will begin my "training" for Peritoneal Dialysis the first Monday in May... only 17 days!

I have copied some information about PD Dialysis, how it works, and what I needed to do to prepare for it... people should learn about it because this is what I will be doing if and when I get a transplant... If you are a visual person and want more information, please go to the website and learn. Very facinating information to say the very least.

http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/#how

In PD, a soft tube called a catheter is used to fill your abdomen with a cleansing liquid called dialysis solution. The walls of your abdominal cavity are lined with a membrane called the peritoneum, which allows waste products and extra fluid to pass from your blood into the dialysis solution. The solution contains a sugar called dextrose that will pull wastes and extra fluid into the abdominal cavity. These wastes and fluid then leave your body when the dialysis solution is drained. The used solution, containing wastes and extra fluid, is then thrown away. The process of draining and filling is called an exchange and takes about 30 to 40 minutes. The period the dialysis solution is in your abdomen is called the dwell time. A typical schedule calls for four exchanges a day, each with a dwell time of 4 to 6 hours. Different types of PD have different schedules of daily exchanges.
One form of PD, continuous ambulatory peritoneal dialysis (CAPD), doesn’t require a machine. As the word ambulatory suggests, you can walk around with the dialysis solution in your abdomen. Another form of PD, continuous cycler-assisted peritoneal dialysis (CCPD), requires a machine called a cycler to fill and drain your abdomen, usually while you sleep. CCPD is also sometimes called automated peritoneal dialysis (APD).

Whether you choose an ambulatory or automated form of PD, you’ll need to have a soft catheter placed in your abdomen. The catheter is the tube that carries the dialysis solution into and out of your abdomen. If your doctor uses open surgery to insert your catheter, you will be placed under general anesthesia. Another technique requires only local anesthetic. Your doctor will make a small cut, often below and a little to the side of your navel (belly button), and then guide the catheter through the slit into the peritoneal cavity. As soon as the catheter is in place, you can start to receive solution through it, although you probably won’t begin a full schedule of exchanges for 2 to 3 weeks. This break-in period lets you build up scar tissue that will hold the catheter in place. ***** I will be doing the overnight, while you sleep treatment*****

Getting ready...
The standard catheter for PD is made of soft tubing for comfort. It has cuffs made of a polyester material, called Dacron, that merge with your scar tissue to keep it in place. The end of the tubing that is inside your abdomen has many holes to allow the free flow of solution in and out.
Whether you choose an ambulatory or automated form of PD, you’ll need to have a soft catheter placed in your abdomen. The catheter is the tube that carries the dialysis solution into and out of your abdomen. If your doctor uses open surgery to insert your catheter, you will be placed under general anesthesia. Another technique requires only local anesthetic. Your doctor will make a small cut, often below and a little to the side of your navel (belly button), and then guide the catheter through the slit into the peritoneal cavity. As soon as the catheter is in place, you can start to receive solution through it, although you probably won’t begin a full schedule of exchanges for 2 to 3 weeks. This break-in period lets you build up scar tissue that will hold the catheter in place.
The standard catheter for PD is made of soft tubing for comfort. It has cuffs made of a polyester material, called Dacron, that merge with your scar tissue to keep it in place. The end of the tubing that is inside your abdomen has many holes to allow the free flow of solution in and out.

I hope that everyone is doing well. We are getting excited for the dinner and golf outing... I am thankful and happy to have so many people willing to help out. Again, please contact Patti with any donations for a raffle/auction at pshanahan4@cox.net or 402-415-1931

Enjoy the weekend... when anything new happens, i will let people know. Right now is just a waiting game. I HATE WAITING!!!! :)