Wow I can't believe I haven't posted here in such a very long time. A lot has happened since my last blog entry. I celebrated my 37th birthday on May 30, 2016. As many of you know , I am on the kidney transplant list at Vanderbilt University in Nashville. Last year, I received 6 calls from them about a possible kidney. I can't describe for you the emotional roller coaster one endures when you receive a call. Needless to say, none of the calls worked out because my cross matchs always came back positive. In the kidney transplant world, a positive cross match is not a good thing. The transplant team was baffled as to how the national computer could match a kidney to me, but once the cross match was done, I wasn't a match. They wanted answers...we wanted answers. During this process, we decided to try our luck at a transplant center in Arkansas. That ended being a total waste of time and energy as the Doctor turned me down based on medicine that I take now for my lupus. It is the same medicine you will be required to take post transplant. I was highly disappointed with this center as they have one of the best hospital designs in the country. As the summer went on, I received a few more calls, but none worked out. I felt as though maybe I will never get a new kidney; maybe this is all in God's plan for me. I'm not sure what God's plan for me is...I know this has taken an emotional toll on myself and my family. I try to continue on with life, as much as possible. I attend my dialysis treatments 3 nights a week from 6:15pm until around 1:45am. I swear it's like going to a job. I wouldn't wish this on my worse enemy. I spent a majority of the summer at home, as my ability to travel more than 2 hours from home is limited. For me it's like being in prison; not being able to live a normal life. Fall came, and still no new kidney. We were told they would be opening up a new nocturnal dialysis clinic closer to my home in November. Let's just say it is January 22nd, and it has yet to be opened. I had my 2 year re-evaluation at Vanderbilt at the end of November. We finally got to speak with one of the transplant doctors. He took the time to finally tell us why the cross matches kept coming back positive. As it turns out my body has created antibodies the doctors can't even identify; thus giving us positive cross matches. The team discussed giving me 2 different drugs in an effort to reduce the antibodies production and help increase the chances of a negative cross match. We were happy, someone actually sat down with us and told us what was going on, instead of just saying, "no we won't do the transplant". The doctors are currently working on getting this approved and going. I'm happy that we may finally be moving in the right direction. December came and with it the holidays. I got the chance to enjoy family and even take a trip to Nashville for New Year's Eve. Then came January..still no word from the doctors. I was scheduled to have surgery on my arm to have my fistula revised on January 25th, but it clotted on Wednesday January 18th, so I had to have emergency surgery. I ended up spending the night in the hospital and was just released yesterday. My surgeon was unable to place the catheter in my neck as usual, but placed in my upper right thigh area. I am not happy at all about where he put it, but I guess it could have been worse. Thank God it's only for 4 weeks. As of January 11, 2017, I have been on dialysis for over 6 years. When we started this process, we were told that I should receive a transplant in 3-4 years because of my blood type. Well, that hasn't been the case at all. My blood definitely has made it almost impossible to find a match for me. I pray daily(sometimes more than once), that I will get a call saying they have a negative cross match and this nightmare will be over. But until that day comes, I will continue to go to dialysis, advocate for dialysis patients, and inform others about the need for organ donors. There simply not enough organs for the number of people on the waiting list. Everyday, at least 18 or more people die while waiting for a kidney. There are over 123,000 people on the transplant waiting list; with most needing a new kidney. What most people don't realize is you only need 1 kidney to live a happy healthy life. If you're not an organ donor please consider becoming one; you could help save up to 8 lives. Since things are kind of slowing down in my life, I can get back on track with my blog. I am going to try and make an entry at least once a week, even if it's a short one. Thanks to everyone for reading this and I wish each and everyone of you a great 2017!!!

Happy 37th Birthday to Me!!!🎂🎂🎉🎉

Hey family,

I know it's been a while(that's an understatement) since my last post. Well to be exact, it's almost been a year. A lot has happened since. First, I would like to say I turned 37 on this past Memorial Day. I spent my day at home with my family. My parents grilled out the day before, so we ended up eating leftovers instead of battling the masses out celebrating the holiday with their families. I swear, hear in Huntsville, everyone's favorite pastime is going out to eat. There are a lot of new restaurants to choose from in the area, so who could really blame them. I must say my favorite restaurant is still Rosie's. I will be trying the Texas Brazilian Steakhouse, so I will do a little review and let you know how it was.
As far as my health goes, my lupus is still active according to my labs taken by both of my rheumatologists. I tried a new infusion drug called Rituxan back in March. The first treatment went well, the second not so well. I was half way through the infusion when the RN turned up the rate of infusion and I had a severe allergic reaction. My hands turned a blotchy red, began to itch, and my throat began to swell up. I knew I was in trouble when my voice became hoarse. The RN immediately gave me an antihistamine shot along with some Benadryl. Seeing that these two remedies weren't working fast enough, I was given more antihistamine while the nurses called my doctor. He was in another building, but would be coming to the infusion floor quickly. While we waited I continued to get worse, prompting the nurse to call UAB's rapid response team. They arrived within minutes and we were headed to the ER department. Wow, what a day. In May, I returned to UAB to see my doctor, where he ordered labs to be drawn to see if the Rituxan helped control my lupus. The summer went by, with no further incidences or trips to the hospital. I continued to do nocturnal in-center hemodialysis on Sunday, Tuesady, and Thursday nights for 8 hours and now it is reduced down to 7 hours. I really wish I could go back to doing home dialysis, it allows you more control over your own treatments and the increased ability to travel whenever you want. Later in the year (I believe it was October)I went back to Vanderbilt's Kidney transplant center for my re-evaluation to be continued on their kidney transplant list. Everything went well, and I am still listed as "active", meaning if and when a kidney comes in that's matched for me I will receive it. Yay!! In November, the day before Thanksgiving, I ended up having an unexpected surgery, but was released from the hospital Thanksgiving Day. The holidays came and went, as most of the time I was at dialysis center receiving treatment. I was happy that the clinic manager did rearrange our schedule so that we could spend the holidays with family.
In January, I reported to UAB's Kidney transplant center for my re-evaluation. After speaking with their doctors and staff, I was placed on the "in-active" wait list; meaning I still accumulate time but if a kidney comes in I wouldn't be called because of my lupus activity. I felt as though this was somewhat of a setback; but there's always Vanderbilt. Speaking of Vanderbilt, I received a call from them in January for a kidney. That call, however didn't work out. Then in February, I received 2 calls , one was one a Tuesday morning. The coordinator stated that I was the back up person for that kidney, and if it didn't go to the other patient then I would get it. Unfortunately, the kidney went to the other patient. Just when I started to get down about things, my coordinator called the next evening around 7pm and asked me if I was still packed. I told her yes, and she said they had a kidney for me. She sounded vey excited, stating that this was a perfect kidney for me and that it had not been on ice long and was from a younger person. We drove to Nashville as fast as we could. When we arrived I was taken up to the transplant floor where they began triaging me. The nurse attempted to start an IV and take blood but was unable to get any, so she said she would return. The resident came in and began to explain to us how things would go. She had been talking no longer than 5 minutes, when her pager went off, she ignored it. Then her cell phone rang and she excused herself to answer it. She came back into the room and stated that the kidney didn't match, and that the surgery couldn't be done. I along with my parents were in total disbelief. I began to question her as to how it was determined especially after we had been told it was a match. She stated that the crossmatch(they run your blood against the donor's blood for antibodies that would cause rejection) was positive. If they had done the surgery, my body would immediately reject the new kidney. I told her no crossmatch had been done, because they couldn't get any blood. She argued that the RN was able to get a small enough amount to run the test. In my mind, I thought there was not enough time between the RN leaving the room and the resident entering, to run the test. For future reference, it takes at least 4 hours to complete a cross matching test. So I left Nashville without a new kidney. Let's just say I was devastated. The idea of not having to be stuck in the arm with 2 big needles, three times a week had been ruined. We came to find out later that the kidney they had called me in for wasn't even my blood type.
Needless to say, I'm still on my dialysis journey three times a week. It is a long and at times depressing journey. Especially when you see everyone else's life continuing, when you feel like yours is on hold. I have taken action when dealing with my health. I've taken it upon myself to become a certified kidney health educator. This means I can educate people about kidney disease, and the different types of dialysis. My main goal is to keep people from ending up on dialysis(if possible). By this I mean being proactive with their health by exercising more, changing their eating habits if they already have signs of kidney disease, and to take the signs/symptoms of the disease seriously. I feel as though, if I can help one person not end up like me, then it will all be worth it. I am also becoming a big advocate for becoming an organ donor. Organ donors save lives. As far as my lupus goes, well, I'm continuing to research new medicines and continue to do all that I can to keep it under control.
If you would like more information about organ donation, go online, there are lots of great websites out there with a lot of valuable information on them. I have also started my on Facebook page in order to help find my living donor. If you would like to help me and be tested to see if you are my "Angel" donor you may contact Joyce Eller, RN at Vanderbilt Kidney Transplant Clinic. Our bloodtypes don't even need to match, you just need to be in good health to donate. We can do what is called a paired exchange or be part of a kidney chain(I will explain that in my next post). I know this post was long, but I needed to fill you in on the lastest Nikki happenings. Talk to you soon! TTFN!

Nikki

Happy 36th birthday to me!!

I know it's been a while since my last post, but I've been dealing with a lot these past few months. First, let me say I happily celebrated my 36th birthday on yesterday Saturday May 30th. It was sort of a low key celebration. I was happy that our entire family went out for an early lunch at Libby's in Madison, located of of Hwy 20 right behind the McDonalds, and Hardee's.  At first I didn't think I would like it, but the food and the service was great. It is a family oriented restaurant serving some of the best old-fashioned Southern food in the area. I can't say enough about the staff, they were very attentive and made us feel right at home. Some of their famous menu items include catfish fillets, country fried steak, burgers, baked chicken, ribs, etc. some of their sides include mashed potatoes, onion rings, french fries, baked sweet potatoes, and so much more. Check them out for lunch during the week, you won't be disappointed.

     Now back to my latest adventures with lupus and kidney disease. I finally was able to begin using my fistula back in February. Yes, I was a little scared about being stuck in my arm with 2 large needles during every dialysis treatment. I mean really, who likes being stuck with a needle. The initial stick by far was the scariest, and to this day I still get an anxious every time go for my treatment. I was prescribed a cream similar to lidocaine that is suppose to numb the area thus making it less painful. Well....I beg to differ. It helps a little but not a lot. I asked the nurse practitioner about the "cold" spray that some people use instead. This kind of freezes the area, making the stick less painful. It also helps that I have a wonderful dialysis tech with years experience who is great at sticking me. I am still doing the 8 hour dialysis treatment at night 3 nights a week. It's not the best sleeping situation, as you are in a chair that reclines all night. It's definitely not the same as sleeping in your bed. But nocturnal dialysis is a lot less strenuous on your body and your heart. The rate of "pull" of fluid and toxins is a lot slower than regular 4 hour dialysis treatment. It is also the closest thing to having a transplanted kidney as a patient can get. I definitely can tell a difference in the amount of energy I now have, plus my lab results look way better. I have had one bad experience while at dialysis. One night I was stuck by someone other than my regular tech, and damaged my fistula. My machine continue to alarm throughout the night, thus not allowing me to finish my entire treatment. I went to my vascular surgeon, who immediately scheduled me for surgery the next morning to go in and clean out the clot and look to see if the stick may have  caused the damage. After surgery, the surgeon stated that the improper stick contributed greatly to my malfunctioning fistula. I then had to have dialysis that night, needless to say I didn't want to go. Things went better, as I had the RN stick me. I have developed anxiety every since that incident.

     As far as my lupus goes, it has been trying to flair up for the past month or so. It began with the rash on my hands, then the pain in my joints, and the constant fatigue. My rheumy advised me to increase my dose of steroids, something I don't like to do. I am also on the IV drug called Benlysta once a month. This drug had stopped all symptoms of my lupus for quite a while. I'm not sure what caused this recent flare up. It is getting better though, I am happy to report. If you or someone you know has lupus, you may want to mention Benlysta to them.

     Other than that, things are going well. Just tired of all of this rain, I am so ready for Summer. If any of you have any great summer vacation plans, please comment below. Since I am listed as active on the kidney transplant lists at 2 medical centers here in the Southeast, my travel is severely limited. I guess I will have to live vicariously through you all and my Facebook friends. Please feel free to post your vacation pictures anytime. One thing that I am looking at doing in the future is featuring a guest blogger once month on my blog to give their story of the their battle with one or both of the diseases. If  you are interested email me at nlbhones1979@gmail.com. Talk to you soon!

An Unexpected Setback

Hey everyone, hope your month has started off well. The first part of mine started off pretty normal, that is until my appointment last week to see my vascular doctor regarding my dialysis access in my left arm. I went to the appointment expecting to hear him say the access was ready for use, and the dialysis center staff could start using the needle to do my treatments. Well, that wasn't the case. They did an ultrasound of the arm, and after a while my doctor came in to talk to me and my mother. He proceeded to tell me my access had clotted off and was no longer functioning. Needless to say, my Mom and I were in a state of disbelief since they hadn't even used the access yet. He then told me, I would need to have surgery in 2 days to see if he could clear the clot and save my fistula (access). He told us that this was something that happens with most dialysis patients over time. This was not what I wanted to hear. If the clot couldn't be cleared he would insert a graft into my vein. I really had no choice but to have the surgery that Thursday morning. I prayed a lot between Tuesday and Thursday, hoping God would allow him to find a way to clear the clot and save my fistula access. Thursday morning came around quickly and I was a little scared, but I put everything in God's hands. We arrived at the hospital at 8:30 AM, and began surgery preparations. The nurse informed us that doctor was running behind in surgery and there were a couple of patients ahead of me. The anticipation and waiting was the worst part. Your mind has a chance to go through all the "what ifs". But once again I said I silent prayer and left it in God's hands. You see God is a doctor, a surgeon, and healer when you need him to be. I had nothing to fear...I knew I was in good hands. Finally, the nurse entered my room and said they were ready for me. I said goodbye to my parents and down the hall I went. Upon entering the surgical room, they placed me on the surgery table, and gave what the RN called the "I don't care medicine". They put on the oxygen, and I was out within seconds. When I awoke, I was in recovery and my nurse told me everything went well. My surgeon was able to remove the clot and save my fistula access!! He did have to place a Stent in my vein, because they were so small and causing the closure and decreased blood flow. I was thrilled but in a lot of pain. I was reunited with my parents after a short stay in recovery. I was then discharged home. I continue to give all praises to God for being with me throughout the surgery and making it possible for the clot to be removed. You see, when things seem impossible or you feel like you can't catch a break, God steps in right on time!! Thank you God for always keeping your loving arms around me!! There's nothing God can't do!!! Blessings to you all!!!

What A Summer!!

Hey my fellow lupies (others suffering with Lupus). Yes, I know I once again have fallen off the horse when it comes to blogging; but only for good reasons. I have had quite the summer to say the least. I am just happy to be here, alive and kicking and thanking GOD for continuing to let me see another day.

     Well let me get to the "tea". I left with my Dad to Pine Bluff, Arkansas on July 18th, for what was suppose to be a short "3 day trip". But as most of my lupies and ESRD folks know, if it's going to happen, it will. When I left that Friday, I was not feeling my best but felt well enough to make the trip. By the time we got to the hotel, some 5 1/2 hours later I was really tired and quite drained. I did my peritoneal dialysis as usual that night. The following day I felt really bad and was running a temperature of over 100 degrees. I laid in bed all day and didn't eat very much at all. I told my Dad I wasn't going to be able to make the event that night and that he should go without me. He didn't want to go, but I assured him I'd be okay until he returned. 

     Upon his return to the hotel room, he could tell I was in bad shape. I asked him to help me stand up to go to the restroom because I was nauseated. He immediately knew I was in trouble. He helped me to the restroom, and this is where my memory gets kinda jumbled up. I am not sure if I passed out and hit the floor but I remember my Dad rushing into the restroom to see what had happened. He found me laying on the floor and tried to get me up but couldn't. He immediately called 9-1-1, and the paramedics arrived soon after. I was transported to the hospital there in Pine Bluff where I remained in ICU for a couple of days. Little did I know my Dad had been in touch with my Mom who was here in Alabama. He also had been researching a way to get me transferred to the University of Arkansas Medical Science Center located in Little Rock. My Mom made it to Pine Bluff; my brother drove her and my Aunt there. She stayed in Arkansas with us, while my brother and Aunt returned to Madison.

     I remember being placed into the ambulance and arriving at UAMS. I do not remember much upon my arrival to the ER. From what I have been told, I displayed very shallow and labored breathing after my arrival there. My parents said one of the ICU physicians was observing me through the glass, and asked how long had I been like that. My parents said 2 days. This doctor told the ICU staff to immediately place me on a ventilator because I wasn't getting enough oxygen. I am not sure if they medically sedated me at this point or if I went into a "coma-like" state, but I was unconscious for several days and the staff could not wake me. Things continued to look grim for me from what my parents have told me. The doctors discovered that I had peritonitis, another bacterial infection behind my catheter, pneumonia, a fungal infection of the brain, and I became septic. I almost did not survive. But my parents never gave up and prayed along with friends, family, old co-workers, my church family (Little Indian Creek P.B. Church) my Aunt's church family, my second church family (Eagle's Nest Ministries), my lovely Sorors both back in Alabama and there in Little Rock, and many of the nurses and physicians caring for me.

     Well y'all all I can say is I am a living testimony, and that GOD heals. One day out of the blue I just woke up and sat up in my hospital bed. I was very disoriented but was so glad to see my parents there by my side. The whole time they never left the hospital, but slept in the 4th floor family sleeping quarters. When I woke up I was surprised I had a tube down my throat to help me breathe and a NG tube also. Once I saw my doctor, he said "well it's good to see you Ms. Rip Van Winkle". He said "it seems like you just went into a long, deep sleep". But I believe that was GOD's way of letting my body rest.

Here's a picture of me, that my Dad took several days after I woke up; notice the NG tube in the nose. But the one thing I had to have was a pair of sunglasses because my eyes were sensitive to the light in the room and outside the window. I was so glad when the respiratory department removed my breathing tube....finally I could breathe on my own!! Yay!! But little did I know this was the beginning of a long journey of recovery and several more weeks there in the hospital.

     We returned to Huntsville on August 20th, but I didn't get to go home right away....not yet anyways. I was taken to HealthSouth where I had to undergo occupational, physical, and speech therapies to help improve my balance, strength/endurance during activities and walking, my ability to concentrate and make decisions, my fine motor skills, and my speech. I also had to start eating more; something I had a hard time doing. I had a great rehab team: I am forever greatful for all their help. The rehabilitation was a long and tiring process. I got to where I was able to climb a few stairs, and walk with a walker. My balance was still an issue but had improved. My cognitive function also improved; my deficits decreased with rest. I still have trouble with my memory and concentrating on tasks for long periods of time. I was discharged from rehab on September 4th, and was finally able to return home. I was so excited to be home!! You never really know how much you miss being at home until you are not there for a long period of time.  Being back home was just the beginning of a long journey for me!!!

Happy New Year!!!

Hey everybody, hope you had a great first day of 2015. A New Year means a new me/you and a new beginning. Although I didn't have any plans on New Year's Eve, I got to spend the evening with family. Honestly, family times are some of the best times. I have learned over the past year the time spent with family is priceless and can never be taken for granted. Last year for me brought about another wake up call and made me want to get my ish together. Whether that's finances, business, family, friends, furthering my education,etc. Although today is officially the second day of the new year, I want you guys to think about this...even write it down. What are things you did in 2014 that you would have done differently? What are things you didn't do in 2014 out of a lack of fear, confidence, finances,etc. What are you planning to do this year that are totally out of your comfort zone? Believe me, I have several things I can list about the above stated questions. One of my major goals is to take the "what if..." phrase out of my vocabulary. It no longer exists. On my next entry, I will tell you a few more. Business wise...I am still working my Mary Kay business. I finished December pretty well, and am looking forward to a great January, one filled with new opportunities to meet new people and also grow my team. I'm Racing for Red...I will explain that in a later post!! Health wise, things are about the same..still waiting on a new Kidney. I am currently taking dialysis in-center 3 days a week, so pray for me. This is not an easy experience but one I will conquer. I'm just waiting on that all important call from Vanderbilt University Medical Center saying "come and get your new kidney". Oh what a day that'll be. I know God is in control. Talk to you all soon, and once again Happy New Year!

Happy Sunday!!!

Hey family...I'm back. I have been away for while for various reasons, but I'm back!!!! Whew, where do I begin. Well first let me start by telling you whats been going on with me health wise. I am still in the process of waiting on a kidney. Right now, due to my Lupus still being active I can't have the transplant done even if a kidney became available for me. Yeah, that sucks. It is something I am having to come to terms with. My nephrologist (kidney Doc) is baffled as to why my Lupus will not burn out. He said in most cases of patients with lupus, who go into renal failure and need dialysis, their lupus usually burns itself out. Of course, I always have to be "that one that won't act right", LOL. Nothing has gone as it was suppose to with me. I told him he needs to right a book on me and we can share the profits. I have thought about writing a book about my experiences with lupus, kidney disease, high blood pressure, and dialysis. What do you guys and gals think? Would it be informative to you? I think it would be a great resource from a patient's point of view. I notice that there aren't many books about lupus out there. Hmmm..I might look into doing that.
But anyhow...my blood counts or Hematocrit levels continue to be low but stable. I have got to eat foods with more ingredients to help elevate my red blood cells and my albumin levels. In other words More Protein!! That is one problem with being on dialysis, I am not really hungry. Now that it is getting warmer (it was in the 80s today here) outside I don't eat as much. Any suggestions on protein filled foods that taste good?? I am responding well to my monthly lupus treatment; my Benlysta infusion. I don't have any aches and pains anymore, that's great!! With this being Lupus awareness month, I will be sharing some facts about Lupus until May 31st. And if there are any questions you would like to ask me please email me at nlbhones1979@gmail.com. I will try my best to answer them as accurately as possible. If you have any information you'd like me to discuss about my experience with lupus, kidney disease, and dialysis I would be glad to help keep you informed. Remember, this is coming from my own personal journey, and I am not a substitute for a physician's opinion.
I am still working my Mary Kay business. Please check out my own personal Mary Kay website at www.marykay.com/nbhones, for great gifts starting at as little as $10. Wow, good quality makeup for $10, that's unheard of but these colors are great. My goal in this is to make it to Director. It will take some hard work, recruiting and sharing this wonderful career opportunity with other women. Ladies, school is about to be out and I know some people will be looking for a job this summer. Please contact me for more information about this great opportunity. Mary Kay is Hiring!!!
Okay...this is a continuation from my post. This week I had a great day on Monday. People say you can't make any money by "selling makeup", well first I don't "sell makeup". I am a beauty consultant who helps women find their inner and outer beauty via skincare and cosmetics. I am so proud of myself, I sold $199.39 in product in less than 15 minutes. Some people don't make that in a day. I love my Mary Kay because I can work where and when I want to, the flexibility is great, I AM THE BOSS, I help enrich women's lives, I have the chance to win a career car, and go on great trips. Plus, Mary Kay is great at recognizing their consultants and their successes. When was the last time your job recognized you? I want other women to join me in this great opportunity. Email me at nlbhones1979@gmail.com for more information about this great opportunity. Talk to you soon, and have a great week!!!!