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!!!! :)

Prescription and costs... forever!!

I just got an email from the Financial Advisor with the University of Nebraska Medical Center. I have learned the cost of medication I will have to take for the rest of my life. I learned that you can't miss these pills. I have learned that I will have to take each of these everyday, forever, for always. I guess I better get used to having a "schedule". Crap... there goes my "footloose and free lifestyle!"

I know that I have insurance, but take a look at the cost of these medications. What?? I guess I have not paid close enough attention in the past. I feel bad for all the people who don't have healthcare, or friends willing to help and donate. So once again, thank you very much in advance!!!

For example, medication that i will have to take F O R E V E R cost 1,177.70 a month w/out insurance. For me, it will cost 100.00 a month until the end of time, or until i run out of "lifetime coverage" with my insurance company. Could you imagine? using up 2 million dollars in a lifetime?? Wow. Other medication costs include a pill that costs, 99.70, and that is the generic brand and if they don't have a generic pill, we are looking at over 300.00 a month. And about 15 pills at 10.00 each bottle. Do the math... that is over 256.73 a month... forget about the hospital charges.

I feel like i am beating a dead horse here, but crap, this won't be done with the kidney is placed in me. I will still have a lifetime of changes and "new normals" i will have to get used to. I guess people shouldn't sweat small things... life could be much worse!!

I guess the hospital can tell I am in "panic" mode. I call a lot during the week and beg them not to send me to collections. I call the nurses and ask if the skin on my belly should be itching so much. I ask if I am coughing and sneezing should i go to an ER to make sure my port isn't infected. I used to not care about all this stuff. I used to laugh at people who "overreacted"... look at me, I am a freak of nature!! AHHH!! (big smile)... I have always been a freak of nature... now I just have something specific to blame it on!

Kidney Klassic Information

I know that not everyone will be reading this, but those that do, here is some information on the "First Annual Kidney Klassic"... Saturday June 5, 2010.

There is a golf tournament for 55 per person, with a four person foursome. This cost includes golf cart, 18 holes, cart, dinner, and prizes. It will be a shotgun start at 1:30 pm atShoreline Golf Course in Carter Lake, Iowa. This is going to be a lot of fun and should be entertaining to say the least! :)

If people don't golf, my sister is also having a dinner/party event at Knights of Columbus Hall at 4323 Washington St (South of Q). Dinner will be from 3pm until whenever we run out... starting at 8:30 there will be a DJ and some dancing and drinking... all for a GREAT CAUSE!! My sister is taking any items for a silent auction and has gotten some amazing goodies!!


Again, thanks for everything and I hope that everyone has a happy and healthy spring!!

George and Reba

I just did something awesome. I had front row tickets to Reba and George Strait!! I mean wowsa!! I also did something in regards to the "transplant adventure"... I left a letter for George and his crew!! I put my "Kidney Klassic" flyer in an envelope. I wrote on the back that we were having a fundraiser and party, and if he would be able to give something with an autograph, it would be AMAZING! I felt so great all night and didn't even worry about things that are out of my control. Soooo.... before George's encore, I tossed both my notes on the stage. He literally stepped on it which made me super excited!! No, George didn't pick them up, but I was patient (shocker) and waited for the crowd to die down. I yelled to "Marti" a back-up singer and explained what the letters said. She picked them up and said, "I'll show them to him". HOORAY!! It was just cool to have them taken off the stage by someone who will see Mr. Strait. It was great.

Still no kidney matches. I wanted people to know that the waiting list is 3 to 5 years for me to get a donor that isn't alive. So although this is a LONG process, it is nice to know that I am closer then I was a few weeks ago.

I am still sore and taking pain pills for the Catheter placement, but hopefully it is healing well and an infection can be avoided!! I am also in a "slump" and have been fighting it as much as I can. Hopefully with some time and healing, I will be able to get back to my self and have some fun.

Ready to roll...

Well, we are almost ready to go. I have met weight requirements. I have taken care of my diabetes. All we are looking for now is a Kidney. Man, a few weeks ago I wasn't one to ask for anything, now I need money and an internal organ. HA! HA! Here is the information for people who are SERIOUS about donating. I MEAN SERIOUS!! I know that people say, "I'll do it!" or "i will get tested"... but now that we are here, and this is so damn close, and i can be my good ol' self again, I want people to be sure this is something they want to do.

Here is what the nurse sent me... go from there....

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.

Ok... That was hard and stressful. Getting closer!!!

Restaurant Manners

I know this has NOT ONE THING to do with my transplant or this awesome adventure i am on, (barf) but i wanted to rant for a few minutes about being a customer at a restaurant. (Please understand I have taken a pain pill, but i still want to get my point across... high or not)

1. Everyone makes mistakes. I am sure if I came to your place of employment, you would make a simple mistake, and when pointed out, it can be corrected within 10 minutes or so. I am sure you aplogoize to your boss, coworkers, and whomever else was effected. Problem solved. If you aren't able to relax, or laugh it off, cook your own damn meal and learn to lighten up!!

2. When a server comes up to your table, please take the .5 seconds to say "hello" and "water if fine" hell, you can even add such comments as, "how are you?" " any suggestions?" Nothing, i mean nothing is worse then when asking a table a question, and the response is... silence. Being the punk I am, I will speak a little louder and repeat my question. "just wanted to make sure you were able to hear me. Sometimes I speak softly and don't want you to miss out!" **I have never spoken softly** I am just shocked at how rude people can be.

3. It is 2010 and leaving a 20% tip isn't bonkers!! Hell, leaving an 18% tip is still considered to be appropriate. But please, lets be serious... 10 to 15% is not even worth a servers time. Do you know that even if you leave any server a tip, they have other people that they need to pay. That beer the bartender opened, the table that was set prior to your arrival, the people that made your food... they all recieve a portion of the tip. So there are times I have acutally had to pay other coworkers for me to serve you. In the state of Nebraska, servers are paid a total of 2.13 an hour. After taxes, and giving other portions to people, we are not walking away with too much.

Please, please, please understand that I LOVE serving in restaurants. Even through all of my medical stuff, it is my goal to get back to working at nights and seeing new people. I was sitting at Panera waiting for lunch when I witnessed a table get upset because of an error that was fixed in what I would say 2 minutes. An apology was made and they were still made. People need to relax... at least they aren't on a transplant list. Ass-holes!!

Hannah and Bailee have arrived... time to spend with my besties!!!

Ugh

For some reason, after my surgery I am hitting a so called, "rock bottom". I just don't know how much more of this i can take. I do realize the pain and discomfort won't be lasting long, but my god, this sucks!! I am struggling to do such things as be a lazy bum and sit down on the couch. The pain is something most people feel, but I haven't had a C-Section, or major surgery ever. This was major and super annoying for me. Anyway, this has been a hard few days. I have done everything I can to play it "down" but I am at a rock bottom and will continue to do everything i can to "bounce back" and get back to the person I was. Thanks for support.

FYI... No more bikinis for me. Wait a minute..... I never wore them. Sweet, one thing hasn't and won't change!! :) *in this picture i am in the post-op. No blood. No swelling. Sweet... piece of cake. I get home... and i see what I think is a ton of blood and even more swelling then my gut is used to. UGH... I wish I was patient and able to wait this out. Thank goodness for Lolly and Patti, they do make this transition and change a lot more tolerable.

Reality Check...

Let me tell you what, I am in pain, I have been taken from the "new normal" to "oh my god, what has happened to me?" I have been in a lot of pain for now over 24 hours, and if it wasn't for the magic of pain meds... I would so be back at UNMC.

I woke up yesterday and was like, "this is going to be a piece of cake". I went into surgery at 9am and when I finished, I had a whole new thought of, "OMG... what the F is going on with me?!??!" I know that as time goes on, I won't be as sore, but the last day has sucked the life right out of me.

Let me start from the beginning... When Lolly and I got to the hospital at 6, we were cracking jokes and making fun of ourselves and those around us. All was normal. We went to "pre-op" and i was given a blanket that reminded me and Lolly of a raft. I mean a real pool raft, it was super entertaining. Phil the nurse said that this blanket would keep me warm and would lessen the chance of infection. As soon as I saw that thing, I laughed. Even Lolly was like, "what the heck? you need a picture of this thingy". So we did (see attachment). I was taken back to surgery at 9am and when I woke up at 11:15 I could feel everything. I guess I wasn't sure how invasive this procedure was going to be. I mean I knew that I was going to be cut open, but OUCH this thing hurts a hell of a lot. When I was taken back to rest, I couldn't get enough pain med. I used to think that my tolerance was high, but I now can admit I am a wimp. (at least i wasn't the guy next to me who was puking in a bucket... I had that in my favor) I was in recovery until at least 1:30 and didn't even want to leave then.

Now we head to Patti's house and I still can't catch a break. I hurt, my back hurts, my gut has been cut open, and when I asked nicely to take out some extra fat, their respose was "nope". Bastards! I just wanted to be at my house, but per doctor orders, I will need to get some help. I am glad they suggested that because I can't even walk without extra help. I am so used to doing things myself, I still struggle with relying on others. I know that this too shall pass, but please hurry! i am not patient enough for Mother Nature or whatever is acutally in charge!!

I really hope to be back to normal over the weekend. Doctor's think this will take about 6 weeks to "heal". OHHHH.... I forgot to mention this... the Dialysis nurse stopped by yesterday, as I am high, as I am moaning in pain to say the following... "no showering for about 4 weeks. We need this to start healing without getting wet at all" WHAT?!?! How in the hell was that NEVER mentioned to me before? Dicks! So thanks to the amazing staff at 7 Salon, located here in Omaha with so many awards and talented people, I don't even know where to begin!!! ... I will be going to the salon every 3 days to get my hair washed and set. What?? I feel like the Blue Hairs that go every Saturday morning to get their "hair did". Its ok, one less thing I have to do!!

Thanks for letting me vent. Happy Easter weekend!! Hannah, Bailee, and Kim... love you all and hope this weekend goes as well as it can!!