Tuesday, January 25, 2011

My Time on the List: On my way

My Time on the List: On my way: "Well peritoneal dialysis training has started and I am already doing the exchanges myself. It is amazing I thought all those college de..."

On my way

Well peritoneal dialysis training has started and I am already doing the exchanges myself. It is amazing I thought all those college degrees were history...I was a bit rusty but I got the touch back...I am not lying.... for a person with no medical experience the beginning could be a bit daunting. However I bet with an experienced PD nurse like my Barb every single one of you renal patients could do this like a pro. So if you are considering PD but are afraid of doing all the exchanges you can ask your dialysis nurse to show you the whole procedure and you can do hands on. It is very freeing to know you can cleanse your body of the build up of toxins everyday.
How this works is amazing...here are some valuable words with definitions...peritoneum or abdominal cavity- contains your stomach, spleen, liver and intestines.  Peritoneal membrane -the lining that surrounds the peritoneum. PD solution is  placed in the peritoneum through the permanent catheter. The peritoneal membrane filters waste and fluids from your blood into the solution. The solution containing the wastes is drained from your peritoneum after several hours and replaced with fresh solution. It displaces through the peritoneum so you don't look like a balloon...I really didn't believe this. I mean I have dissected more cadavers then I can remember but when it is YOUR peritoneum and you are looking at putting a 2 liter in there...well I thought I was going to be Hilda Hippo and sound like a washing machine when I walked...Not at all....Now I am pretty small so we started out with a smaller amount. But I have to tell you my body has taken to this like a fish to water. I am still not hungry but my nausea is gone. I do 4 exchanges a day for the first month then I go on a cycler that exchanges 3 bags while I sleep. I can expect to see my energy level return pretty quickly..which will make EVERYBODY happy because I am pretty grumpy not being the Energizer Bunny.....no not grumpy I believe we could use the B word here.
So that's what I have been doing...I encourage all renal patients not to be intimidated. I realize this isn't for everybody but investigate all options before deciding how you want to treat your renal failure....and my best most important advice is....BE COMPLIANT....let me say that again..BE COMPLIANT..do what your dietitian tells you...yes now you can eat protein that doesn't mean you go out and grab a tub of fried chicken and a beer. EXERCISE....get off your arse as soon as you can. You want your peritoneal catheter to heal correctly so for the first few months walking is great...I won't be weight training for 3 months when the weather breaks bicycling will be great and I am going to have to adjust my beloved Pilate's. I doubt I can develop much that doesn't stress the peritoneum...I am not very optimistic so we will see what I find that's doable for active PD'ers. Next don't miss your clinic and doc appointments and keep getting your labs pulled. Sticking your head in the sand only shortens your life....plus I found out something....if your team feels you are not following the instructions of your clinicians and abusing your care they can recommend you be taken off the transplant list.  It makes great sense...if you can't follow the PD parameters why should you get an organ...life after transplant is dependant on following a strict regime of medications.. so that is that.
Oh I know what I am going to do..golf. Scott almost passed out when I told him this. Honest I thought I needed the paddles. I mean I have had golf shoved down my throat my whole life. My mother would have been on the early Women's PGA tour had she not gotten preggers with me. My dad lived to golf....of course I hated it. Then God played a sick joke on me. Vowing never to get married I ran into a guy in a bar one snowy April Saturday...actually a blizzard. The beginning of the Stanley Cup playoffs was on the TV. Ya think I would have noticed he had a golf shirt on...UGHHHHHH and then I gave birth to a.......scratch golfer..I knew I had problems when I saw him cutting teeth on the handle of his dad's putter. So I have finally given in....What the hell I think I will look sharp in a Hawaiian shirt and plaid pants. OOO and I am thinking Panama hat..

All my love to my team of backers and you know who you are.....I am working on a design for team caftans...Erin you are in..:o)

More later... the big question....what will be the first thing I eat when I get my appetite back????


Monday, January 17, 2011

My Time on the List: I Am On My Way

My Time on the List: I Am On My Way: "I am sorry for not updating sooner but sitting up and typing was not a particularly comfortable thing to do. I had my peritoneal access surg..."

I Am On My Way

I am sorry for not updating sooner but sitting up and typing was not a particularly comfortable thing to do. I had my peritoneal access surgically put in last Tuesday 1.11.11. I must say the night before I kept looking at my body thinking, "geez I am going to be like Bionic Man....wake up and my body really isn't mine anymore". Thanks to all my great PD nurses and new great friend Peggi Speers at Patients Pride I went in well informed. My nephrologist the great Jerry Dancik made sure I had the very experienced dream surgeon Dr McIntosh. Renal patients all these things are you responsibility. You have to talk talk talk to people and investigate who is the best and what you should do. Positioning of your peritoneal port is so very very very important....I am very active so this was super important.....did I say this was important???lololol Prior to seeing the surgeon who will do your PD access surgery make sure you go in and meet your PD nurse for a conference. Your first meeting you  learn A LOT of things so take your partner or person closest to you. Scott remembered a lot of things I didn't. As the patient no matter how many notes you take or closely you listen you miss things....I have a huge medical education and background so I focus on the technical however those wind up not being the crucial things you need when you are feeling like crap....you need to remember that Dr McIntosh said it would take well over two weeks for there to be no discomfort.....aka PAIN. I have that wonderful patient personality...I was crying 2 days after because I hurt considerably when I moved...in fact to be honest it hurt like a mother. I thought I should be all better....what an idiot. I thought I would run right out to the grocery hahahaha.In recent weeks I have come to be more realistic about expectations I have for myself...Thanks to my husband Scott and dear dear friend Jan I see myself more realistically......I no longer have to be super human I can a regular person and I must say it is freeing. As people with chronic illnesses we are always battling something...utmost our bodies. We get so tired of every time we run into someone the first thing they say is.....how are you feeling. UGH. We deal 24/7 with this issue lets talk about the weather, the kids, the pets anything else. However I digress, thanks to Scott having his listening ears on he was able to take me in hand, comfort me and give me information I needed to make sure I slowed it down and let my body heal itself. You just have to have that second set of ears .My procedure was outpatient at Unisource with amazing nurses and the first time I have ever had anesthesia and not been sick as a dog.  Everyone was so kind it just made you feel better. I went into surgery about 1:30 and was home at 5:00 with slow driving because of snow. Basically there are tiny incisions to the left of my belly button and in my belly button and the tube comes out about 4 inches below and 3 inches to the left of the bb. No muscles are cut, just eased apart. Bleeding was minimal. I didn't do anything to the surgical area until Friday when I went to see Barb my PD nurse and she cleaned the site, flushed my line for the first time and showed me the best way to take care of it..This consists of cleaning the sites once a day with soap and water and gauze and redressing the area making sure the tube is secured with tape.I got lovely parting gifts of a brand new IV pole and fancy schmancy scale which will probably be my enemy as eating is just not something I do anymore....that will change I am sure once I feel better and can eat something other than cardboard. Once the port was placed I was able to call Patients Pride and order my custom PD band which will hold the tubing in place and give me support. Additionally the people who run the Patients Pride are full of helpful and crucial imformation for successful PD. So that is where I am today.....healing correctly which is the most important thing. Wednesday is another visit Barb and have her flush out my lines, Thursday is visit my surgeon then next week is the big week.....I start my day long training for a week with Barb and all the PD people(Nutition, social work etc) and begin living on PD. I am feeling like an old dishrag so I am excited as heck to get going....I am going to try walking to day and hopefully hit Joann's for the red tag material sale.....I am making a ton of new clothes to accept my PD access. How exciting....gotta learn to use my fancy new embroidery/sewing machine.....I think a hear swearing in the future

Monday, January 10, 2011

My Time on the List: Last Note Before a lifelong Change

My Time on the List: Last Note Before a lifelong Change: "A short post before my life changes dramatically...From here on out I will not be the only one in control of my body for the rest of my life..."

Last Note Before a lifelong Change

A short post before my life changes dramatically...From here on out I will not be the only one in control of my body for the rest of my life. I will have a foreign body of some kind keeping me alive until I pass to the next life whether it be my PD filter or hopefully God a transplanted kidney. To be honest it is a little sad to realize this body which has served me so well for the last 55 years is going to feel different and look different. However I have been so inordinately blessed in my adult life that I can't feel bitter or mad. I feel blessed that the doc's and medical community have figured this whole treatment out and created a support system for me at Beaumont that fills every need. So my friends I will talk to you about my adventure from the other side later this week and we will all learn many new things...Oh and I will include an epiphany I had about myself and try and write that darn piece about friends that just can't deal with your illness...


My Time on the List: Two Tube Boogie AKA Peritoneal Access Surgery!!!!

My Time on the List: Two Tube Boogie AKA Peritoneal Access Surgery!!!!: "Well, I can hardly believe I was scheduled so fast for the implantation of my peritoneal access. In fact no one else could believe it either..."

Sunday, January 9, 2011

Two Tube Boogie AKA Peritoneal Access Surgery!!!!

Well, I can hardly believe I was scheduled so fast for the implantation of my peritoneal access. In fact no one else could believe it either!!!!! This Tuesday....yes 1.11.11....and double digits are my lucky numbers especially 11 i.e....April 11th..the royal birthday MINE LOLOLOLOL This is done outpatient. I heal for 4 days and Friday I go to the Troy Beaumont Dialysis Unit and see my Barb and she flushes my lines to help prevent blood clots, change my dressings and check on everything. My BF Jan and I decided while walking that is was just the best thing as I don't have time to ruminate over the whole thing....Jan...I don't know what I would do without her. I have written briefly about her. She lives across the lake from me and we therapeutic walk together either outside or on the track at our beautiful Older Person's Commission facility 6 days a week....even God rests on Sunday. We call it more than walking because the talking is probably even more important...Jan has MS..she is still doing well after all these years but is dealing with increasing issues...so yea I basically don't have to explain anything to her.The progression of our illnesses and our hiding them, then giving up on that, are mutually shared on the same time line. She just totally gets everything and like me is brutally honest...which is what I live for...if I am acting like an ass or have the wrong take on something call me on it....feeling crappy makes me a major grouch some days and I have learned the fine art of apology. Everyone reading this who suffers from a chronic illness knows no matter what a fabulous person you are ( Yes Kimora Lee and I have FABULOSITY!!!) there are days when you want to bite the head off a rat...sorry PETA people that is just a euphemism...:o) So the importance of reaching out from our situation and having communication with others is truthfully healing. Listen sickies.....don't buy a ticket on the pity train because you will see yourself get progressively worse. Asian cultures have long known your Chi or mental balance plays an integral part in how you progress in your illness. If you are unable to physically walk....walk with you mind and personal interactions. DO NOT STAGNATE. Jan is my Guardian Angel and I am hers.....Thanks God!!!
Okay so the two tube boogey.....for those looking to learn more about the PD process check back after Tuesday. I will then start to blog more about the particulars so I can take the mystery out of this dance. I also will be learning more about supply deliveries...for PD you get a truck load of your dwelling solution, tubes and supplies about every month,..I have hooked up with Sheila Shaw's Patients Pride and Peggi Speers who helps guide PD patients like myself through the ordering of a miracle band that supports the PD tubes. I will write extensively about this when I can order mine....have to have the tubes in to measure correctly to have them made....All this helps to keep your sites less stressed and clean,....Sam's old bedroom is going to be my PD room for the month I have to do exchanges 4 times a day....clean, no animal hair and storage of all my tools. A corner of the walkout has been designated for storage of the gazillion boxes of IV bags....Planning for me is cathartic...I feel in control. Dr. Dancik sure knows his patient. He told me I would love this because I was the boss. The main worry with PD is sepsis and keeping infection at bay. If not you wind up with peritonitis and on hemodialysis. Soooooo can you say HAND STERILIZER by the gallon and 3 times a day vacuuming any dog hair. NOW some people will say you have to get rid of your pets....Nooooo. You have to be careful while doing exchanges to keep them away from you...and to keep fur cleaned up which we do anyway. My pets help me to live a sane life....
Okay that's what going on for now...gotta get the 2 youngest boys packed up and sent back to school to do that thing they do so well. Oldest son Dan wants to sit with his dad during the surgery.....says he can work from surgical center. Gotta love him. We'll see. I don't like to interrupt their lives..it's not like this is my transplant...now then there will be a huge partayyyyyyy!!!!!!! I believe I hear the word BURDEN coming to mind...Unless there is a major affair occurring I prefer to let life go on unimpeded. However you have to consider what makes your children (and at 25 they are still children) most comfortablele and secure. So we will talk...the very best thing you can do.
Also I start my PD training Jan 24th...a week of day long training on doing my exchanges....thank God for my medical training....However doing it on yourself is a whole different ballgame so I am going to be the STAR pupil....don't ever want to piss my medical people off..hehehehehe. I will also continue my discourse on friends. I am trying how to delicately write about a baffling failure in a lifelong friendship. It hasn't upset me at all just disappointed me...BUT I have so many amazingly wonderful things happening in my life already 2011 is 100X better than 2010....what could they be???????? stay tuned Power Rangers
TTY after the Two Tube Boogie

Monday, January 3, 2011

Your Eyes Don't Really Tell You Much

Gosh, I have a lot of things that have been running through my mind. Like why is our society such a visual one???? For those who don't know our youngest dog and I had a major accidental head butt and I got basically knocked out AND a lemon size bump on my noggin, swollen almost shut left eye and double black eyes..I still have one slightly black eye and a golf ball bump. I also was still limping from the pseudo gout in my left foot ( this comes from a build up of phosphorus in the same joints as gout sets in.....a clear indication my renal function is shot when the binders can't pull PH enough out). Soo when I used my handicap sign to park no one ever said anything...Now, I seldom use it but lately I know how tired I will be coming out of the store so I have pocketed my pride and used my brain and used the darn thing. People in stores were so sympathetic when I was banged up yada yada yada.....Okay flashback a few months to when I really was feeling like crap and used it. I looked perfectly fine...in fact I looked beautiful thanks to years working as a model and learning the fine art of hair and makeup....God bless Revlon. Let me assure you I am not. I had 2 people make nasty ass remarks as I went into the store....excuse me if this bothers you so much why not call call the police????? Who made you the handicap spot God????? A friend of mine had a quadruple bypass and had the same thing happen...he ripped open his shirt and displayed a 14 inch scar to the offenders...awesome!!!! However I have boobs so I think when I get my PD access if I do that I could wind up in jail for indecent exposure. My point is we need to look deeper at people and actually use the brains God gave us before opening our mouths. When this happens I feel it is my duty to explain renal disease to these uneducated people...and I see their eyes glaze over. I finish by asking them if they are registered organ donors which sends most of them packing. However I am pretty sure they won't harass a handicap parker with a permit anymore. Having this disease has made me realize that when I look at a person I really don't learn a darn thing  about them. The outside is just packaging..or advertisement..or how they want the world to think they are. How does this relate to the friend issue???? That will be clear in my next blog...Would your friends have chosen you as a friend if you had a flaw they didn't know you have???? What happens when they realize you could die on them or you will be walking a razor tipped wall for a while..do they stick like glue or back off???This whole visual approval thing comes into play.....my renal disease has made me so much wiser. It also has educated about the way the world works...not at all how I thought.Most importantly it has made me realize I am not an as astute judge of character as I thought I was. True Colors show when the chips are down......so my friend blog will have a little sadness and disappointment and a ton of ...Wow people are amazing and good and have thrown out so many hands to grab I am dazed. People I just never ever thought of.....

Sunday, January 2, 2011

A New Year Thank Goodness

Well I almost slept through the New Year....thank God hubby woke me up. I felt bad but he had the TV to himself and got to overdose on hockey and football. He is so supportive I just know I would not be where I am without him. Obviously, I can't get on peritoneal dialysis (PD) soon enough I have NEVER slept through anything in my life. My butt is dragging big time, I don't care if I eat or not,,,which is not new for me..and I just feel like BLAH. Melanie was right you DO know when it is time. I kind of relate the holidays for a person like myself.....end stage renal disease... to that of being an unmarried career woman in a large family of married highly fertile siblings. I have such a friend and she has told me for years to look in people's eyes as they approach and you can tell if you should suddenly have to go to the bathroom or not. For her they have the....Sooooo are you dating anyone special (make sure the voice goes up here)????? look....and the killer...You know you are not getting any younger you'd make such a good mother....finale.  For me it's.....(cue squenchy eyebrows bent head little nods) Soooooooo how are you doing???? (Voice goes down) and the killer??? ....Be thankful for every day. OMG....SHUT UP. Think before you talk to a chronically ill person because I can guarantee we are thinking..what the He## do you know??? I have thanked her many times because she was right on the button and that insight has saved me many times. I have friends on both ends of the spectrum. So the next couple of blogs are  about what to expect when varied and all of your family and friends find out you have a life threatening disease. First lets deal with family. My parents have passed and I am an only child...which I have come to greatly appreciate (except for lack of an organ match).However I do have very close family and they are so supportive and treat me no differently than they did before....which is exactly what anyone in my position really wants..well most days except like now when I am tired but insist  I am not and say I can do anything...when I can't. So basically my family is screwed no matter how they treat me because I get mad at my body but I get over it. This is why I continually thank my husband and sons. They are amazing cuz I can be a real pisser right about now. They repeat back to what I say and we all laugh because I am so ridiculous.....Laughter IS God's greatest gift. Then there is my husband's family.....cue.... black cloud following over their heads wherever they go. Fortunately they do not live anywhere near us. They are just very negative people. I do not do negative and at this point in my life I am sorry but I have to put you in the out going mail if you choose to be like that. Surprisingly people like that really prefer to be on the outside...they are afraid you are going to die and in someway that will hurt them.....I see this a lot. I also understand it. It doesn't hurt my feelings..It is what it is and In am a happy camper who sees the glass half full...the exact opposite of how my parents were. If you are reading this and have a chronic illness start living like this....you will feel better, heal better and life will be so much easier to live. So the idiom..you can choose your friends but not your relatives is very true and for people like me it is a Godsend...however don't expect too much from some of your friends...you can't change their fears and you may be surprised who steps up to be your support and who backs out...I have been.