Change of fluids, Meeting the Donor’s Family, Another Kidney Offer

December 12, 2012 0 Comments Uncategorized

Hello friends-

Once again, it’s been a few months that have passed since my last blog and I cannot apologize enough. I was just talking with a girlfriend yesterday about how hard it is to keep up with blogging.  She thinks the same when she moved out to a farm, she thought she’d have more time to blog.

I have been very busy with the little boy I nanny- he’s now almost 11 months and getting to be more of a handful with crawling around, getting into things, and screaming.  Oh my goodness, the screaming- it’s blood curling, at the top of his lungs; just because he gets frustrated for any small reason or if you walk away.  Sometimes, I almost forget to do my dialysis when I watch him.

Well let’s see- I am kind of grateful that the scorching hot summer weather is over; however, I am not so thrilled about snow, ice, and the very cold temperatures of winter.  THIS is the time to have transplant surgery and recover.  Just curl up under the covers, a heated blanket, thick socks, long johns, a book or several movies, some yummy hot cocoa, and to be waited on hand and foot.  Just not have the surgery occur during Christmas.

So I mention above, “Change of Fluids”.  A couple things have transpired with this subject matter in the past couple of months. The first being the increase of my urine output. This is probably as some would say, “TMI”. Well too bad, because one of the main functions of your kidneys is to get rid of waste which is what we call urine. As a person who has a kidney disease or even End Stage Renal Disease, one does not urinate a whole lot; it’s definitely strange, I have to admit.  So, all of the sudden I started noticing that I was peeing more.  One of the tests I have done each quarter is called the Kt/V- I don’t know what it stands for. What I do know is that I have to collect my pee and save my dialysis bags of the toxins I drain for 24 hours.  Before, I would pee 1-2 oz per instance and now, it’s increased to 6-8 oz each time.  The second part of the change of fluids is that I am using my 1.5% dialysate.  I have (2) kinds of percentage of “sugar water” i put in me to clean out the toxins- the higher the percentage count, the more toxins come off.  I have alternated one of each, each time I do a treatment- this results of (2) 1.5% and (2) 2.5%. I put in 2000 cc’s of sugar water in me and should get at least  a 75% in return that drain out.  I noticed in the past month or so that I was getting over 2000 back- I’d get 2200, 2300, 2400, sometimes as high as 2900.  I would get this every time I did a treatment. I shared this with the Dr and she said that it was a very good thing to get a lot of fluid off me.  Since I wasn’t using the 2.5% as much, the company that delivers my boxes of solution noticed and my delivery guy mentioned the possibility of some of my kidney function returning.  It makes sense to me with both items that have changed in fluid output.  Is God healing me slowly?  Who knows?

One of the highlights that happened to me over the past month was meeting face to face my donor’s family. Now, you may recall that I had been keeping in touch with the mother of my donor for over a year now.  She reached out writing a letter to me telling me all about her daughter.  I wrote back and gave her my Facebook fan page, Carmen’s Runway to a Kidney Donor. One day, I noticed that she became a fan of my page.  I befriended her and we have been friends ever since.  She is one of my biggest fans or cheerleaders! She writes me a note about once a week to check in to see how I am feeling and wishes me a good week.  Recently, she wrote me a note letting me know she would be in Leawood, Ks and asked me how far that was from me?  I told her it was about 15 minutes on the highway.

Saturday, November 10, 2012, I got to meet this kindred “pen pal” in person and give her one of the biggest hugs. To my surprise, I did not shed a tear.  I had mixed emotions, so I guess the excitement overtook my sadness. Techinically, I would have cried more tears of joy than sorrow.  We were in a private room as the purpose of the meeting was an event titled Celebration of Heroes- Honoring the donors, both deceased and living. I also got to meet the other kidney recipient.  This lady flew in from NY to meet our donor’s family.  I probably would have done the same thing in her shoes.  It’s a once in a lifetime opportunity to thank in person the individual that helped give you a second chance to live.  We also had the pleasure of sharing our personal stories with a reporter from our local city paper, The Kansas City Star. We did not do this to “be famous”- we did this to help spread more awareness to others expressing how important it is to give life.  Who knows, my next donor could be solely from reading my article?

The event itself was a couple hours- there were heartfelt, personal stories shared; songs sung, a slideshow honoring all the deceased donors, and one of the most meaningful parts is- each surviving donor’s family makes a square of their donor to be part of a huge quilt.  This is something that reflects the individual- their hobbies, talents, personality, and has a photo attached.  There are a lot of children that fill this quilts.

Another meaningful aspect of this annual event is, the recipients get to walk across the stage and the donor’s name is read aloud.  This is almost like a graduation, although, the recipients are not graduating; we are however, celebrating. Celebrating the life of the person that gave theirs in order for us to live.

The sub-topic under my subject heading is very fresh- 5 days ago fresh.  Saturday, Dec 8, about 2pm CST, I am driving to the ATT store to have my phone fixed as I couldn’t hear on the other end of the line.  Being a ESRD patient, awaiting a kidney transplant, I have to have my phone on and attached to me at all times. I had the ringtone on vibrate as I had just gotten back from eating out, so I had not switched the ringer back on.  I felt the phone vibrate a few times as I am driving. As a smart driver, I try very hard to not answer my phone. I can just see the news headliner: ‘Young female driver fumbles to answer her cell phone knowing it could be ‘the call’ she has been waiting for to receive a new kidney”.  I am pretty sure, the police officer would personally escort me to wherever I needed to go and waive and charges.:)  Anyway, once I parked and looked to see who called, I noticed it was a number I did not recognize and thought I’d listen to the voicemail.  I am literally walking in the door of the store, and yell, Holy ****! Customers, and associates jerked their heads to see what the deal was. I notice my regular sales associate that has assisted with me the past couple of years is not busy.  He knows about my kidney transplant and how important it is for me to have an operating phone. I ask him if I can use the store’s phone as I need to call my nurse coordinator back.  By the way, it was my transplant nurse coordinator calling me frantically as they have a kidney offer for me.  I call her back and tell her I was driving and I don’t answer my phone and I was at the ATT store to get it fixed.  She informed me I was #1 on the list and that they are going to go ahead and start the cross match testing.  She had to reach me to ask me some health related questions like: 1) Have I had any fevers in the past couple of weeks, 2) any infections, 3) change of medications, 4) clear drain bags…

While I am still at the store, I managed to receive 2 more personal calls. Ha! The manager called out, “Carmen, phone’s for you.” My sweet associate, patiently waited for me to conclude my calls and chose not to help another customer.  That IS Exceptional customer service and that is why I am still a faithful ATT customer.  I have already shared how pleased I am with the associates I work with and how accommodating the managers are.

I make it back home and told my roommates that we can still go to the movies as I wouldn’t know anything for several hours.  I call my Senior Pastor and leave him a message, I call my Power of Attorney and leave her a message.  I then call my friend that I nanny for to give her a heads up that she may need to find a replacement for me.  Meanwhile, I am packing the last few things to go in my already packed suitcase that sits next to my bed. Gosh, I am so smart, I amaze myself.

I didn’t get too excited as I didn’t want to be let down in case things did not work out, again.  I decided to keep my plans as scheduled that day so my mind’s preoccupied. I go to the movie theatre and it’s about a 2 hour movie.  I let the lady know next to me that I will answer my phone as I might be getting a kidney transplant, I would though step out.  She appreciated me notifying her and honestly didn’t care if I took calls. Another headline pops into my head: “Young female gets throw out of movie theatre because she answered her phone, knowing it was the call that she’s getting a kidney transplant.”

Needless to say, I received a call late Saturday night from my nurse coordinator letting me know that it was not a good match.  My blood did not mix well with the donor’s again and they’ll keep trying.  She encouraged me not to get discouraged.  I then, called my boyfriend, my father, and mother to let them know that I wasn’t going to the hospital.  My boyfriend and father were extremely bummed.  My dad did compliment me on my positive attitude.

I was somewhat relieved because my mom and I had tickets to see The Nutcracker ballet for the first time. I asked my dad if he would go in my place and he very humbly with tongue in cheek said, “um yeah, yeah I can.” Knowing full well he absolutely did not want to go.  My boyfriend’s mother would enjoy it more.

I got to get dressed up and enjoy an early Christmas gift from my mother- and we were chauffeured around by my very sweet boyfriend to see the Nutcracker.  I have to admit, I honestly did not want to be in the hospital or recovering from my transplant during the Christmas season.  Although, it would be like the best Christmas gift eva!

I was craving chinese fried rice the other night and fulfilled my craving.  I then opened my fortune cookie to read my fortune. It said, “When winter begins, the heavens will open up on rain down blessings upon you.” I am not kidding! Now, I am not a strong believer in these fortunes; I find them interesting and comforting as sometimes they are rather apprapoe to my current situation.  I was also reflecting that this is still my year, the year of the dragon and the year’s not over yet….

Thanks for reading my blog.  Have a blessed Christmas with your families. Thank you always for your your faithful encouragement, love, and support.


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