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!!!