Some people ask me questions from time to time. A question I am CONTINUOUSLY asked is, how do you do it?
To be honest, I have NO choice. I do this because my life depends on it. Don’t get me wrong, I DO GO THROUGH. I’m going through as we speak and that is what really pushed me to write. People had been telling me that they are keeping up with my blogs and asking when will I post my next one; I had no answer. So, I decided to write today. For about the last week, I have been discouraged about it all—everything from Dialysis to just my life in general. I do understand that in this battle, times like this DO come. However, I am struggling to handle it and fight and push through. It’s like I can feel the finish line but my body and my mind is pulling me back. My mind constantly thinks and due to that I have been waking up very early. My mind is like a constant machine, thinking of things I’ve done, could’ve done, should’ve done, and shouldn’t have done. I’ve had dreams where I didn’t have Lupus or any type of disease. I had no catheter hanging out of my abdomen. No machine to hook up to every night, no doctor appointments, no nothing. However, I understand that it all happened for a reason and I do have a purpose. You do too. We influence people we don’t even think listen, but they do. Don’t worry though, my time is coming where I will bounce back better than ever. I believe it. You all stay encouraged and remember, this battle IS NOT yours (I’m really talking to myself). The hardest battles are in fact given to the strongest warriors and nothing that is done goes in vain.
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It's early in the morning and I just had to share what happened when I went to the Cleveland Clinic. So, last week I had to return to the Cleveland Clinic for my last evaluation and some labs and let me tell you; I was tired. I was tired of making that drive and I felt like if I only went to Orlando twice and got listed, why in the world is Cleveland Clinic requiring so much?! It felt like my once judged "bestest hospital" to me was starting to get on my bad side. Doctors were starting to make tardiness their thing and I feel like as a physician, you have to be on time, especially due to the fact that a patient's appointment is cancelled after they are 30 minutes late. ANYWHO, the doctor was running 20 minutes behind but miraculously the nurse came out and got me after my 5 minute wait. checked my weight and other routine labs. So she left and a guy walked in and I'm thinking to myself "buddy you have the wrong room". He was young, about 27 or 28, white color, and I noticed his clothes were VERY tight; including his white jacket signifying he was some type of important person. I thought he was a doctor but he looked so young! He walked in and stated "Good Morning Ms. Salter. My name is Johnathan Micheals and I am a Medical Student here at the Cleveland Clinic. It is always nice to meet a medical student because they are fresh with knowledge and they are so "scientifically speaking" that they lack knowledge logically but that's why I love when they meet me because I always school them, teaching them things they would ONLY learn outside of a classroom and a textbook.
God ALWAYS comes in clutch.So, much has happened to the point where I was discouraged, I began to lose focus and I thought I was going to have a nervous breakdown BUT God. God just has an amazing way of getting your attention and making SURE you don't lose focus. School was getting ready to start, Orlando kept saying that they hadn't received certain documents after you sent them over 3 times, Cleveland Clinic had this long process that seem to NEVER end, and Miami just seemed to have an attitude and no type of "customer service" dignity about themselves, and my personal life was just... all over the place. So at a moment I was tired, very tired. So tired to the point where I was about to say forget it and I will just stick with dialysis and I will try it again another time. Most, if not all Lupies have a breakdown AT LEAST every 6 months. I think I feel like I have one everyday but God came in clutch this time missing nothing. When I got that call to be listed I was silent for a moment and then I began to cry. I felt like I could hear God say "all you have to do is trust me and be patient", the SAME thing my daddy would say to me when I wanted a new car. I was overjoyed and very thankful. My body was going through ups and downs and I was sure that it was going to take over a year to be listed but that wasn't in the plan. Due to dialysis I can't get in public water such as public pools, water parks and Jacuzzi. In public places like that, people urine, poop, puke, and even bleed in that water. I love MY life so on that note, I'M STRAIGHT! On top of that I can't soak in my personal tub because sitting water will get in my port and infect it. I can swim but I can be in there long and it has to be my personal pool. Only if I had one. Sounds fun right? I love water and I just can't wait until I get the surgery and I am able to enjoy what I love most. Well now, school has started and it's okay. School is never fun but healthcare fraud is something that I am really interested in. I took my first exam and I received a 100 so you know I was excited and turnt. I finally finished my process with the Cleveland Clinic (which goes before the board soon to determine if I am listed) and I decided that I didn't want to go on with the evaluation process down at Miami. I was told by one doctor of mine that Miami is a "zoo" and honestly, I want no part in that. Sometimes when things go wrong in our eyes we breakdown and feel that nothing is going right and everyone has given up on us but trust me when I say, be patient, because God is getting ready to come in clutch.
Well, for a bit I was discouraged to write because of the fact that no one really understood but I realize that people are inspired by what I do and how I have handled my situation thus far SO, I decided to get back to writing, especially because of the fact that I got my computer mailed back to me (Thank you ALI!). So, I know that many have been writing me trying to figure out what was the news and when I was going to spill it. However, I wanted to inform my family and close friends before I posted it on Facebook.
Careful, it's a tad bit lengthy.Many people have made aware that they've wanted to know and understand the process of donating one of their kidneys. Now, I thought that you just sign up, they call you, test you and boom, take the kidney and hold it in some type of freezer until it was time for me to get it but um, that is definitely far from the truth. I found out that the kidney donor process is just as long and strenuous as the recipient. So first, you have to know if I am listed on a kidney transplant list and the answer is, No, I'm not. I am not on the list yet because I am still going through the evaluation process. Once the process is completed and taken before a board of qualified doctors, nurses and other team members, it is then determined if I am listed or not.
Before I talk about the process..Tomorrow I have the honor (not really) of going back down to the Cleveland Clinic for ANOTHER ONE (Kidney Evaluation) and this one is more intense than the others. Tomorrow, I have to do CT scans, chest X-rays and a couple of other tests. I hope they don't check my weight again because that hospital stay put about 10 pounds on me. Am I nervous? Of course not. I really like this hospital and I really hope and pray that this hospital is in His plan of where I receive my kidney. They make me feel extra comfortable and they will explain EVEN IF YOU don't care to hear it. Well, I've been getting a lot of messages in reference to the kidney transplant donor process. First before I even explain the process, I really have to say thank you; a true sincere thank you. I never would've never thought I would be asking people for an organ but, here I am. Giving an organ is not a everyday thing (it happens alot though) and for those who have told me that you want to donate to my cause by giving one of your own, Thank you, thank you, thank you! But as quick as I say that I must say something else.
So, Monday I was admitted and even though I wanted to be mad as ever, I just took a deep breath and laughed. Now I laughed for a couple reasons honestly. For one, this ain't new. I feel like everytime I cough or blink wrong, I'm in the damn hospital (excuse my language...thats my hidden anger). Two, I really did want them to figure out what was wrong with me but I knew the ER would only do enough to check the Emergency (something I've experienced first hand and I've learned in school). Once I was admitted I knew my Nephrologist would come and actually do all he could to make sure the problem was found and solved. And three, I just had this funny feeling that they were going to keep me even though I felt like it was nothing major. I only got a little angry when they made me poop in a cup. I was so embarrassed. I was about to puke all over myself trying to scoop it from the bowl thing to the testing cup. However, it did come out of me but it was straight water (kill the visual Lord). Definitely a struggle.
So I know in your head you're like "OK Brieana, enough talking, what in the HECK happened to you?!" So, I will explain. It's always something...So, so much has happened since the last blog, feel like. I was excited to start writing another blog to explain what happened with the Cleveland Clinic when I went but then 3 days later I am sitting in the emergency room, not feeling well, and just wanting to lie and close my eyes. Let's talk about the Cleveland Clinic first. Let me be the one to say it if I haven't before, The Cleveland Clinic is a beautiful hospital. I saw people of every color, religion, ethnicity, ALL THAT!! It was such a beautiful sight and it made me more confident and motivated to lose this weight that I've been yapping about. I went the first day and it was just explaining the process and education session of a kidney transplant. It was prerty short and sweet honestly. However, this last visit was extensive. That visit was much longer. I first saw a lab tech who drew about 20 to 30 tubes of blood. She pulled blood for everything! She probably pulled blood just to make sure I'm black too lol. Who knows. I then met with a social worker who pretty much informs me of everything going on. She is the one who will know me best because I talk to her the most. She asked about my childhood and my goals. We talked about who I'm closest to and where I would go once I received my transplant. I met with a dietician who lectured me about certain foods to eat. I was excited because I made it down to 195 from the 240 pounds that I was in January. She explained that my BMI was in range for their kidney transplant program. Excited, I met with the pharmacist who informed me about the medications I would take once I received the transplant. It was about 6 medicines on that list and 2 that were on the list including one I already take will be the 3 I will take for the rest of my life. The other 4 are temporary. I been taking many medications since I started this journey so I'm pretty used to the whole "prescription drug life" thing. I've always said, I'm a part pharmacist and physician by experience. Lol. I then met with a financial counselor who explained that there are things that I may need to pay for like medication that has a total of $4,000.00 alone! I was told that in the event that I have to stay in Ft. Lauderdale after my surgery, I have to fit the bill. I'm a water bag and the tears trickled down my face. NEVER in a million years would I have imagined that I would be in this clinic because my life depended on it. Never in a million years did I think that I would suffer from a condition that I could eventually die from. Not in a million years did I ever think or have to think of ways to fundraise to raise money for a new organ and all the outside costs such as travel, lodging, food and medicines. Most of my life I may been have been big but I was always healthy. Never was I the hospital or sick. I won't sit here and lie and sat it's been a walk in the park because it hasn't. Everytime I turn around it is something. While at the Cleveland Clinic, I felt very very sick. I had shortness of breath, an upset stomach, dizziness, and a loss of appetite. All I wanted to do was lay down. However, I didn't want to miss my appointment with Cleveland Clinic so I went anyway and thank God that my stepmommy, Din Din, was able to go with me. I probably wouldn't have been able to make it. I still have 2 more visits with them so I pray all goes well.
Well, I must say, it has in fact been about a week or two since I made a blog entry and please forgive me. Between birthdays, reunions, my health and just trying to tackle life as a whole, my life has been busy as H. E. double hockey sticks. Yes, I am saying I've been busy and overwhelmed as hell. Lupus has actually been very quiet (HALLE) and I am more than grateful for that. Well, I have a kidney evaluation on Monday (8/1/2016) at THEE Cleveland Clinic (THE BESTEST HOSPITAL IN THE LAND OF HOSPITALS!). I know “Bestest” is NOT a word, so don’t critique too much! (LOL) However, my feelings are mixed about this upcoming experience. I am excited because I have lost about 15 pounds since I was denied from Tampa General Hospital and I feel that I just have a greater chance at getting onto CC’s donor list. I am upset that it is a little far for me--about an hour drive there—to have to drive there 4 times within this upcoming month and they aren’t fronting any gas money. But (a big but), due to the lowering gas prices, I GUESS I am cool with it. I am excited that God has allowed for me to even make it THIS far to be able to lose the weight. I am thankful that He kept my mind sane and gave me the ability to drive down there for this evaluation. But—there is always a but—I have just been EXTREMELY nervous about the whole ordeal. I am always nervous when it comes to my health, even when nothing is wrong so I know I might boo-hoo cry in the car on my way down there—like a little punk. Don’t get me wrong, I am confident and excited about the evaluation but I don’t like when hospitals deny people and don’t try and help. When I got denied from TGH, they explained to me, in a letter, that in order for me to even have a chance of getting on their list, I had to lose about 30 pounds. Now this is a hospital that was willing to take my insurance to cover medical expenses so why not take my insurance and provide me with health options and encouragement to lose the weight to get on their list? I am TWENTY-FOUR years old! I have my entire life ahead of me. So why not try and help instead of deny everything that is not considered healthy according to their standards. In their letter, they didn’t provide a list of things that I could do or programs I could look into to try and get my weight on track. I have ALWAYS been a juicy butterball (my grannycakes would say) and it has been a tough journey to get this weight off of me. Yep, I am so salty. LOL. But it’s ok. I have been walking with a great pace at the park, drinking lots of water (even though I shouldn’t because of my intake restrictions) and just eating better, a lot better. I have gotten a little discouraged but who doesn’t?
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