tag:blogger.com,1999:blog-55246690598749590542024-03-12T14:03:41.654-08:00Sjogrens & MeLiving with an autoimmune disease from diagnosis to kidney transplant to HAPPILY EVER AFTER. This is my plan!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.comBlogger114125tag:blogger.com,1999:blog-5524669059874959054.post-59514265278431090132012-08-21T08:05:00.003-08:002012-08-21T08:05:58.240-08:00<div class="separator" style="clear: both; text-align: center;">
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It has been a busy couple weeks! We went to Disney and had so much fun. I need a vacation from vacation. Lol I behaved pretty well healthwise. Vasculitis tried to show out though. I have so much to write about. Now that my little monsters started school this morning....I will have more time. I still need to fill you in on my potential donor Jay, my trip to MUSC last weekend, and the next steps for kidney transplant. I have a doctor appointment with my rhuemy tomorrow too! Blog post coming later in the week. Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-87934335949055863212012-08-13T11:11:00.003-08:002012-08-13T11:11:35.186-08:00chronic illness postAwesome read with those of us with a chronic illness. Just got back from vacation from Disney! Had a blast making memories with my family. As soon as I get back on my feet, I will post on here. http://blogs.webmd.com/chronic-conditions/2012/08/10-things-lupus-has-give-me.htmlVickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-76853528368671489982012-07-31T16:42:00.002-08:002012-07-31T16:42:50.191-08:00LOVE THIS!<div class="separator" style="clear: both; text-align: center;">
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True. Story.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-4785657742423160042012-07-27T14:00:00.001-08:002012-07-27T14:00:34.685-08:00Sjogren's Syndrome and Kidney InvolvementI have end stage renal failure ultimately caused by Sjogrens. Apparently it has been going on for quite a bit, but it was being sneaky. In fact, I am sure it was going on before I even knew I had an autoimmune disease. Darn sneaky systemic disease. Bad Sjogrens!!
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I am not on dialysis as of now.....I was suppose to be nearly 2 years ago. I truly believe prayer has played a big part of that. My kidneys hang on to functioning at 15%-18%. I have renal tubular acidosis (RTA) which causes metabolic acidosis. The way I have explained it to my two little pumpkins is like this....
A filter for a pool is necessary to clean all the yucky stuff out of it yo make the water clear, clean, and refreshing. Occasionally chemicals are added to the pool when the water gets cloudy
including good ole baking soda. Our kidneys are our filter to make our blood clear, clean, and refreshing just like the pool's filter. Also just like the pool's filter we need to add sodium bicarb (good ole baking soda) to our body to help the kidneys. It helps with the acid, ph balance, and electrolytes. Of course as kidney disease progresses other medicine may need to be added.<br />
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Now if you have renal disease these electrolytes are tested. Mine are tested 2 x a month because if your electrolytes are screwy......then you are screwy! :-) My last hospital visit in March was because of my potassium being at a critical low. My sodium bicarb was extremely low. Calcium was a little low. Phosp<br />
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hate was high and the only thing normal was my magnesium. I was more lethargic than normally. I felt like I was going to hit the floor and never wake up. It was honestly a horrible feeling. I remember working and calling my nephrologist telling him something wasn't right. (Listen to your body) I stayed and worked because that was what I did. (Push myself to absurd physical levels) The following morning I called again and told them something was definitely wrong. After STAT bloodwork, they told me to go the emergency room. Long story short....it took 9 bags of potassium in my IV to get my level normal. That is like enough for an elephant! Now....my levels are low, but not critical. We maintain them through 120 Mg. Of potassium citrate. Also enough for an elephant.
The good news the past 2-3 years there is more information out there about Sjogrens and renal involvement. Also the other organs it can effect. As I said I am waiting for a kidney transplant. I cannot wait to share my news about my possible donor and the latest update on that news.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-15803136441241536312012-07-25T13:10:00.003-08:002012-07-25T13:12:53.105-08:00Sjogrens......good gravy, I am doomed!<div class="separator" style="clear: both; text-align: center;">
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I do believe some of us have thought this a time or two or three or....you get the picture. There is no cure. Yes, we have been brought up a few times on the television show House. When the doctors on that show have no clue, they start listing the autoimmune diseases. Ha! A whole show was based on Sjogrens Syndrome. Our little elite disease has even been on Mysterious Diagnosis. Are we doomed? No way. Nope. Nah. Never.
Do we make adjustments to our lives? Sometimes a little, sometimes a lot. It is part of who we are, but it does not define who we are. I think back to some of the adjustments I had to make. Popping pills was a huge one. I still do not like to take them. Saving my energy when needed....although at times that doesn't work! Lol ahhhhhh the trips to visit the vampires. I think I get doubled whammy on that because of my kidney failure ultimately caused by Sjogrens. However, the good side to each of those adjustments are;
The medicine controls some of my symptoms some of the time.
Ahhhhhhhh.....naps give me time to myself.
I am no longer hyperventilating before blood work. It is easy as can be. What were some adjustments to life when living with Sjogrens or any other disease you may have?Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-70958474940699383842012-07-23T12:53:00.001-08:002012-07-24T03:32:41.438-08:00Vasculitis....My Nemesis!Cutaneous leukocystoclastic angiitis......to be exact. I like to call it an easier name, hypersensitivity vasculitis. It is the most common form of vasculitis and affects the small vessels of the body. For example.... capillaries. It is the imflamation of blood vessels. Mine likes to come out on my legs and occasionally the trunk of my body. Admittingly, my vasculitis doesn't seem to look as horrible as some I have seen. I don't get open sores or ulcers, I get small pin-like purple dots called purpura. Thankfully, as fast as I break out within a few days it is gone. I have noticed a little discoloration of my skin on my calves, but I feel comfortable showing my legs and my faded 16 inch scar on my left calf. :-) my battle wound from nearly three years ago. (Definitely another post)
Now, why is it my nemesis? This stupid, pain in the you know what, fickled piece of poo likes to just show up at the most inopportune times!!! If it's too hot outside and I am in it for just a bit...it comes out. If I am subjected to the cold.....it comes out. If I get emotionally stressed.....it comes out. If I get excited.....it comes out. If I am very active one day.....it comes out.
I take a low dose of the devil called prednisone. I even take a small dose of cellcept. You would think between the 2 I should be in remission with this poo! Nope, I have a chronic case of this poo! It does keep the flares to a couple times a month, instead of a couple times a week though. :-)
I could go into what it stops me from doing at times, how it feels, and all the negative poo about this poo called vasculitis, but I won't. I now beat this culprit by coping with it. Here is a link to good information on all the different types of vasculitis. A lot of good people too.
vasculitis <a href="http://www.vasculitisfoundation.org">foundation</a>Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com6tag:blogger.com,1999:blog-5524669059874959054.post-44994431698220937942012-07-21T13:19:00.002-08:002012-07-21T13:21:10.844-08:00Hamster Wheel of Life.....I have felt like a Hamster. Puffy cheeks and all, thanks to prednisone. I have jumped on that wheel quite a few times. Running from my health. Running from symptoms. Running as fast as I could. Guess what? This gal is tired and I realized I wasn't running anywhere. I was going nowhere.
The good news is my faith is restored. My relationship with Jesus is strong. I may of been running nowhere, but I was not alone. So what have I been doing the past few years? I was working until this past March. This last hospital visit in March just confirmed what I already knew. I was tired. I mean truly exhausted. My health had been sliding downhill the past year. It wasn't a sudden change and all I knew while sitting in tears in that hospital bed....I needed to take care of me. I had to take care of myself before anyone else could. I was tired of smiling through the physical pain. I was tired of not being a Mommy to my two little boys. I was tired of not being a wife. My life consisted of working, coming home to bed, and on the weekends I had a couple hours of energy here and there. Now, I am able to rest when needed. I am able to be a mom and a wife again. I still have bad days, but they are much easier to deal with. I can take care of my self.
I will save other blog posts about what specific health problems I have been dealing with.....don't want to tell ya all my happenings at once! Lol
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So....Yes! I have jumped off that wheel of going nowhere. I am in the process of going from inactive to active on the kidney transplant list. It is taking FOREVER! lol but that is also another post.
It feels good to be back.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-78427585089949084642012-07-20T18:13:00.000-08:002012-07-21T12:36:04.593-08:00Well....Long Time, No See!I have the urge to write again. Amazing. Yes, I am still here! Still waiting on my kidney transplant. It's a long story and I will be sure to fill you next week. I feel like I have abandoned this blog and well in truth.....I did. I used to love writing. It was therapy and I felt I helped others or at least let them know that they were not alone. Once upon a time my blog was featured on CNN as the blog of the day and now with over 40,000 hits I think it's time I get my a$$ in gear.
Ready or not.....here I come! :-)Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-8267882332888584712010-06-16T09:39:00.004-08:002010-06-16T11:29:33.994-08:00Wow...it's been awhile!First, let me apologize for just wanting to quit. I didn't expect to ever feel this way. Me????? Depressed???? OH PLUUUUUease. Yeah, I have had some obstacles thrown my way, but I have always been a positive happy-go-lucky person.<br /><br />But it did happen.<br /><br />I questioned myself. I questioned life. I questioned God. I hated myself. I hated life. I hated God.<br /><br />Why you ask? I don't know. If I did know it would help me make sense of the past year. It would be so easy to find someone....something....anything to blame. I hurt family, old friends, and even new friends. <br /><br />People have told me that I have changed and they want the "old" Vicky back. I have been trying to find her and I have seen glimpses of her from time to time. However, the "old" Vicky is caught up....like in a cocoon....wrapping and shielding herself....and when she is totally able to break free....She will spread her wings proudly. Watch out world....I am coming back!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com5tag:blogger.com,1999:blog-5524669059874959054.post-1325517100400396022009-09-14T04:42:00.002-08:002009-09-14T04:44:35.588-08:00It has been too long!Hi to all my friends out there. It has been awhile since I last posted and I am sorry for that. I plan to get into the swing of things soon. I am doing good and still waiting for a transplant. :)Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com5tag:blogger.com,1999:blog-5524669059874959054.post-73411126174406701942009-08-04T07:25:00.009-08:002009-08-04T07:58:52.546-08:00Canadian Guardian Angel..I have one. I really do. I don't even know her her by any other name but yrhelper.<br /><br />Yrhelper is holding a tweetparty for me. It was kicked off today, my 38th birthday! She is holding a contest with prizes to be won. You must go to her <a href="http://rewards4canada.blogspot.com/2009/08/be-rewarded-for-your-good-deeds.html">blog</a> . All her proceeds that she earns through Sept. 4, 2009 through her online shops will go to my <a href="http://www.transplantfund.org/restricted/patient-detail.cfm?pat_id=2710">NTAF account</a>. (National Transplant Assistance Fund) She is also raising awareness for a possible living kidney donor for me.<br /><br />She had seen a request made by my Mother-n-law Kathleen on her <a href="http://activerain.com/blogsview/1149538/where-do-i-begin-viral-request">active rain blog</a> . From what I understand is that she has a sister that has an autoimmune disease that was attacking her vital organs, but were able to stop it in time with medicine. Unfortunately, that is not my case and part of the reason why I blog about my disease. If I can help just one person to not get to the point that I am at...it is soooooo worth doing this blog!!<br /><br />Yrhelper is on twitter...so follow her! Her blog is <a href="http://rewards4canada.blogspot.com/2009/08/be-rewarded-for-your-good-deeds.html">Rewards4Canada</a> . She has great coupons and money saving ideas too.<br /><br />I am asking you to reblog her post. Follow her on twitter and return her tweets for all to see. I can't believe my guardian angel is doing this. Again, I don't even know her name. <br /><br />Amazing, huh?<br /><br />I really don't know what else to say...I am speechless. (and for those who know me, that is hard to believe).<br /><br />One thing I can say is....<br /><br /><br />THANK YOU Yrhelper!!<br /><br /><br />I also want to thank anyone who has helped me. I really appreciate it.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com4tag:blogger.com,1999:blog-5524669059874959054.post-60607617939687535782009-07-18T13:18:00.005-08:002009-07-18T13:26:50.566-08:00who am i ???i have been here for 10 days.<br /><br />i know all the nurses, doctors, and vampires on the first name basis. <br /><br />i am going to get a blood infusion.<br /><br />My morphine pump is my best friend.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com4tag:blogger.com,1999:blog-5524669059874959054.post-38656862575207587472009-06-30T16:27:00.003-08:002009-06-30T16:34:44.524-08:00Just an UpdateWell, still waiting to see if someone else will be tested at MUSC. I feel like I am on hold once again...playing the waiting game. I have been tired too, my Doc allowed me to get my procrit injection 6 days early. That helped.<br /><br />I have an eye doctor appointment on Thursday. I have been having blurred and double vision lately. I think it happens more when my eyes are dry and tired. I think prescription eyedrops will be called for. I also need new glasses and definitely something for the sun!<br /><br />I think I have said "I Think" a bunch of times in this post....enough about me!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-73540132172516153512009-06-22T14:11:00.003-08:002009-06-22T14:19:27.755-08:00What Sjogrens means to me....letter by letter<em><strong>S</strong></em> Scary at times<br /><em><strong>J</strong></em> Joint & muscle aches<br /><em><strong>O</strong></em> Other people out there...I am not alone<br /><em><strong>G</strong></em> Good days....& not so good days<br /><em><strong>R</strong></em> Renal failure<br /><em><strong>E</strong></em> Eyes feel like sand is always in them<br /><em><strong>N</strong></em> NOT going to beat me<br /><em><strong>S</strong></em> Stiffness through whole body<br /><br />What does it mean to you?Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com3tag:blogger.com,1999:blog-5524669059874959054.post-34065099663901162712009-06-17T14:23:00.002-08:002009-06-17T14:32:55.223-08:00Been Busy!!!I am one of two people in charge of this year's cancer survivor's fashion show at the hospital I work at. It is tomorrow afternoon and I am EXHAUSTED!!<br /><br />I have had so much fun planning this for our fellow clients and friends. Cancer survivors are a strong bunch of people. I get some of my strength from them.<br /><br />The theme is "Under the Sea" and we have a treat for all! From the music to a soloist who is a 4 year cancer survivor singing one of her own songs she composed for us. (She has CD's available....she is THAT GOOD) The decorations, party favors, refreshments, and the whole atmosphere is going to be FUN!<br /><br />We are remembering 2 individuals I had the pleasure of meeting last year. They were such a strong inspiration to me, but lost their battle to cancer. They were models at last year's show and will be deeply missed this year. <br /><br />I can't wait to see if we can pull an awesome experience for these amazing individuals!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com3tag:blogger.com,1999:blog-5524669059874959054.post-64198917688578909062009-06-13T17:49:00.005-08:002009-06-13T18:07:50.849-08:00Vitamin D3 and KidneysI recently started taking vitamin D3 supplements. I decided to do my own research on what this means to the health of my kidneys. Here is my interpretation.<br /><br />Vitamin D is available through the sun and in a few foods as well. It is actually a hormone. It is processed through the liver and given to the kidneys to be circulated through the blood for optimal health and strong bones. Our parathyroid gland release PTH to help stabilze the situation.<br /><br />In early kidney failure, the kidney is not able to activate vitamin D. Not only that, but it becomes inefficient at excreting phosphate thus causing this to elevate in blood levels. It can eventually cause bones to become soft and bendable, robbing the body of the vitamin D it needs.<br /><br />If calcitriol is started early in kidney failure, parathyroid levels may be kept low enough that calcium/phosphorus imbalance never becomes an issue. If it is started later in failure, it is helpful but may not be able to provide as good a response.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com1tag:blogger.com,1999:blog-5524669059874959054.post-60172935356866059812009-06-11T14:12:00.004-08:002009-06-11T14:18:12.292-08:00Maybe next time...I recieved a phone call this morning that Jordan will not be able to give me one of his kidneys. He only has one working and the other just isn't doing a thing. I am sure it was a surprise to him and his family....so please keep them in your prayers.<br /><br />John and I can't thank Jordan and Jenny enough for trying to make this happen. Also, thank you to his extended family as well. Many people live fine with just one working kidney and have no problems whatsoever. Jordan <em>will</em> be one of them.<br /><br />Jordan is still my hero...Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com5tag:blogger.com,1999:blog-5524669059874959054.post-85916929802716953422009-06-09T14:34:00.003-08:002009-06-09T14:43:40.328-08:00Sorry...not been in a posting moodI am sorry about the lack of posts. I am anxious to get the results of MUSC on Jordan. He goes in tomorrow and Thursday for testing. I have been really tired lately too. My procrit was adjusted and I think the past 5 or 6 days have been like a blur. I need toothpicks to hold my eyelids up. :-) <br /><br />The good news is that I get another round of procrit tonight, so I should have a burst of energy the next couple of days. Please say a extra prayer for Jordan, Jenny, and all their family the next few days. Please say a prayer that the transplant team can answer all their questions and address any concerns they may have. I am looking forward to hearing from the 2 of them tomorrow night.<br /><br />I started taking vitamin D-3 last friday. Hence, another break down of my kidneys not performing correctly. I will have to do more research on renal failure and its association with having to supplement with vitamin D-3.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com1tag:blogger.com,1999:blog-5524669059874959054.post-72244522683481002132009-06-04T14:52:00.010-08:002009-06-04T16:04:04.964-08:00Let Me Introduce You To Jordan...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigN7dL0C97XcvAuf7vYvfc1Fj8pYsIcsft6eFQuCmT0nmYGezJ-25hu_5vCwthkWRgW-ZEX6zgF3oGmyEgYeOAvSzQR96UHsCx-j1EuO1qgobre0Tg_oeyG8GLHqMjSI-BtQPHvC5I_rh8/s1600-h/Jordan.jpg"><img id="BLOGGER_PHOTO_ID_5343609399373342674" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 282px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigN7dL0C97XcvAuf7vYvfc1Fj8pYsIcsft6eFQuCmT0nmYGezJ-25hu_5vCwthkWRgW-ZEX6zgF3oGmyEgYeOAvSzQR96UHsCx-j1EuO1qgobre0Tg_oeyG8GLHqMjSI-BtQPHvC5I_rh8/s320/Jordan.jpg" border="0" /></a><br /><br />Jordan is my match and potential donor. He is Jenny's husband. If you visit my other blog, you probably know that Jenny is a good friend and a co-worker of mine. BTW she is in her last trimester of pregnancy! <br /><br />I met Jordan nearly 3 years ago. My first impression of him was that he was quiet, looked really young with that babyface of his, and very serious! LOL Now, I know that he loves to talk about computers, sports (especially the Clemson Tigers), loves his family, likes to have fun, and has a GOOD heart......and hopefully a good kidney too. ;-)<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip1Ybu6J56uOSL8IVz94vz1CVnC3V8uBf_fNSZR4q2nOfkkoBUuHh_z56e06NjJjbqD3wqoYJz9pKB_m4QG1X1V6nWBExGdzaMIaBfCzbeyU-HbrD6ltSSENzjKdcii7LbXtZOMHQxeGPA/s1600-h/jordan2"><img id="BLOGGER_PHOTO_ID_5343609269841459026" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip1Ybu6J56uOSL8IVz94vz1CVnC3V8uBf_fNSZR4q2nOfkkoBUuHh_z56e06NjJjbqD3wqoYJz9pKB_m4QG1X1V6nWBExGdzaMIaBfCzbeyU-HbrD6ltSSENzjKdcii7LbXtZOMHQxeGPA/s320/jordan2" border="0" /></a><br /><br /><br /><div></div></div><br /><br />This is him with his daughter Suzi. He is a very patient,kind father to her.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKPxeadQaBefUM6ZaXHWOQdCDTUqIWZXaZj2WbJ_AjxSe8vwBa29XOIxxx7p9YcjhAp7Dj8WOglfdk_oT2g0jvwWl5uiGKia4cT0EOHVl5hEUZ5ujPi6QgHppfg0TsDb3t6TNn0-HNq94M/s1600-h/bellyedit.jpg"><img id="BLOGGER_PHOTO_ID_5343612319540306354" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKPxeadQaBefUM6ZaXHWOQdCDTUqIWZXaZj2WbJ_AjxSe8vwBa29XOIxxx7p9YcjhAp7Dj8WOglfdk_oT2g0jvwWl5uiGKia4cT0EOHVl5hEUZ5ujPi6QgHppfg0TsDb3t6TNn0-HNq94M/s320/bellyedit.jpg" border="0" /></a><br /><br />And this is Jenny who is pregnant with their second daughter. I absolutely love this picture. (Hope you don't mind Jenny...your belly looks beautiful)<br /><br />I plan on talking more about him and his family soon. It will be an interesting few months if all goes as planned. After a few blood tests, we found out that he is a match to me. He goes next week to be evaluated by MUSC for 2 days. They will check on his heart, lungs, kidneys, and be evaluated by transplant team in detail on his health. When he is done with MUSC, he probably will feel like a guinea pig....but to me he is a hero.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com3tag:blogger.com,1999:blog-5524669059874959054.post-51708775901118999062009-05-31T08:45:00.005-08:002009-05-31T12:26:22.555-08:00It Has Been Awhile!I have been busy since we got back from our little vacation. (a much needed or else I was going to go crazy vacation) Nolan was in his end of the school year play that the 4K performed. He was a <a href="http://2lilpumpkins.blogspot.com/2009/05/preschool-musical.html">rock star</a>...and quite the "star" of the show I might add. Yes, I am a proud mommy! I can't believe he will be going to kindergarten in a few short months. Gah!<br /><br />My blood work has come back and my creatinine is starting to creep back up a little. It was 2.8 this last month. Up from 2.6, but better than the 3's it has been in the past year or so! <br /><br />I have been working on a small personal project of mine with my family to help raise money for the costs of transplant not covered by insurance for me and my living donor. We will be selling t-shirts to help raise organ donor awareness. I will post a pic of them as soon as they are done. I am excited and many others are as well!<br /><br />Now....for the best news. I have a match for a living donor. So far, everything looks good as far as the cross matching, tissue typing, etc. He has to go to MUSC June 10-11. Please pray that all his tests come back that he his as healthy as a horse. :) Also, his family has a few concerns about organ donation, please pray that they find total peace with him being my hero. They support him, but are scared for him a bit....understandably. The concerns I have heard his family express are just "myths" and I think with educating them on living donors it will calm their fears a lot.<br /><br />I will announce who it is as soon as I ask him and his family if I can blog more about it...specifically more about him! I would like to tell the world who my hero is. (even if it comes back he will not be able to donate to me)Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com1tag:blogger.com,1999:blog-5524669059874959054.post-42093188030917087052009-05-29T18:17:00.000-08:002009-05-29T18:18:23.247-08:00Update Later This Weekend....and it will be good!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-8308234421938163032009-05-21T18:06:00.008-08:002009-05-21T18:26:27.906-08:00Ode To Procrit Injections & My KidneysOh procrit, you have helped me along the way,<br />Giving me enough energy to feel okay.<br />I guess you can say you have given me my life back,<br />even though your sting is like a bee attack!<br /><br />Oh procrit, you help me make enough red blood cells,<br />Because my kidneys want to shut down & fail.<br />At times it is quite funny you see, <br />I have this love/hate relationship with thee!<br /><br />Oh procrit, my kidneys would be lost without you,<br />I can't wait to get a transplant so that I may say adieu!<br /><br /><br />This Ode was brought to you by a very silly moment. I don't take responsibility for my mood swings. :) If you want serious information on what procrit injects have done for me...go <a href="http://sjogrensandme.blogspot.com/2008/11/what-procrit-injections-have-done-for.html">here</a>!Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com0tag:blogger.com,1999:blog-5524669059874959054.post-55331401851938264102009-05-19T15:32:00.005-08:002009-05-20T14:14:03.931-08:00I'm BACK!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihn1XjoXfeZZpcVozCwigufLcT6Lsn-6nTs_zGO3BVhgqcz0WFiVjPBiEkGY_EINBULAn8Mp3GfRGZWNrvEggh8UtfpMQjzne7SJUa6l1-ee7t1lBFiqFufj-rCWmUh7ohCNY2OlL_jw-n/s1600-h/Myrtle+Beach+May+09+046.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihn1XjoXfeZZpcVozCwigufLcT6Lsn-6nTs_zGO3BVhgqcz0WFiVjPBiEkGY_EINBULAn8Mp3GfRGZWNrvEggh8UtfpMQjzne7SJUa6l1-ee7t1lBFiqFufj-rCWmUh7ohCNY2OlL_jw-n/s320/Myrtle+Beach+May+09+046.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5337682561360339906" /></a><br /><br />We all had a great time and I will post more later this week!<br /><br /><em><strong>EDIT</strong></em>: Go to <a href="http://www.2lilpumpkins.blogspot.com">2lilpumpkins</a> to see a small video of our vacayion.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com2tag:blogger.com,1999:blog-5524669059874959054.post-20921977109757905172009-05-13T14:49:00.005-08:002009-05-13T15:01:54.320-08:00I think I have been snickered...Yes, I have come to the conclusion that a skinny nurse has finagled with the scale I weigh in at my nephrologist's office. That piece of metal "claims" that I have gained 10 pounds the past 3 months. Gah!<br /><br />I am suppose to be losing 10 pounds before transplant...not gain them. Oh and to top this all off...I was weighed right before our beach weekend. Nothing like an extra 10 pounds on this pudgy body already....now I get to prance around in a bathing suit with hopes of not scaring everyone. Gah!<br /><br />So....I am going to lose this weight as soon as I get back next Tuesday. I need one last dinner before I execute my appetite...it is on death roll. (hehe get it? ya know the rolls most of us have). Ok...ok...I will see you all next week before I put another stupid line in this post.Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com3tag:blogger.com,1999:blog-5524669059874959054.post-9418109323251894182009-05-09T10:41:00.005-08:002009-05-09T11:14:20.750-08:00Fun in the Sun<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXDncAZSmvo_XaHOe8HM6fd767J3c4rbMREVfa-tQz1AFSNX4luMGI93jaLfrIxMAixjfIJKIdo_krQts-yKhiPQ45LiI7Sym5j1XR18whLQuMds8x4IdOoVhqyNKCrNcL6QSLFnErqCjo/s1600-h/sun_15.gif"><img id="BLOGGER_PHOTO_ID_5333896766906627826" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 135px; CURSOR: hand; HEIGHT: 107px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXDncAZSmvo_XaHOe8HM6fd767J3c4rbMREVfa-tQz1AFSNX4luMGI93jaLfrIxMAixjfIJKIdo_krQts-yKhiPQ45LiI7Sym5j1XR18whLQuMds8x4IdOoVhqyNKCrNcL6QSLFnErqCjo/s320/sun_15.gif" border="0" /></a><br /><br />Next week this time I will be giggling all the way down a water slide with my boys. Or perhaps sipping a frozen "adult" beverage while admiring the sound of the ocean. Maybe I will even be building sandcastles or collecting shells trying to see which one still holds a hermit crab. Regardless I will be the one with the SPF 50, movie-star sunglasses, and beach hat on. I can't wait.<br /><br />Hubs and I were suppose to go away one night for our upcoming 9 year anniversary, instead we decided to make a long weekend of it and take the boys to the beach. We will be staying 3nights/4days at an oceanfront resort. (we got a fabulous price...my mother-n-law would be proud)<br /><br />Here are some <em>fun in the s</em>un precautions to take if you have an autoimmune disease or on any medication that makes you sensitive to the sun.<br /><br />*Make sure you have SPF30 or above on. Bath in it. I personally like to use my kids waterproof coppertone SPF50 and it blocks dangerous UV rays.<br /><br />*Wear the "Audrey Hepburn" sunglasses. Protect your eyes or you will pay for it with the burning gritty sand feeling for days.<br /><br />*Limit your sun exposure. Stay in the shade when you can or stay under an umbrella. Big sun hats can help a bit.<br /><br />*Drink plenty of H20...if you have an "adult" beverage be sure your medicine won't cause a bad reaction.<br /><br />*Wear a good chapstick or lip gloss so that you don't end up with dry cracked lips. I love burt's bees lip shimmer. It is a great chapstick with a hint of color.<br /><br />*Shower immediately after you come in or at least rinse off at those outdoor showers provided to get the salt or chlorine off of your skin.<br /><br />*Moisturize your skin. I love <a href="https://www169.safesecureweb.com/carenpro/merchant2/merchant.mvc?Screen=PROD&Store_Code=CP&Product_Code=1160&Category_Code=HP7">Caren lotion</a>. It is a hand treatment, but it works great on the rest of the body too!<br /><br /><br />Here is another blog post from my friend Julia @ <a href="http://reasonablywell-julia.blogspot.com/2009/03/sjogrens-and-swimming-pools.html">Reasonably Well</a><br /><br />What do you do to prepare for a day or weekend for fun in the sun?Vickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.com1