First and foremost, June 11th we did an amazing job at Maple Lanes with raising good money for the New York Organ Donor Network. I am so proud of my team as well as my family. Secondly, I have been thinking as to what to do next. Where is my life going? All of these things cross my mind everyday! Yes, I have been through a crazy ordeal but I am ready to put that behind me and embrace new challenges, making amazing memories. Therefore, I have enrolled in the Institute of Integrative Nutrition which is a one year, online program. Its starts July 11 but actually, I am starting fundamentals now. Hopefully, I will help to change people’s lives for the better. You know, I have come to understand that, yes, my journey has been heroic is some sense but its up to me with what I do now that counts to verify all that I’ve been through.
I have been dealing with a lot of medical challenges lately but I am only looking into the future. It is a brand new year and I’m looking forward to writing a book and motivational speak for events. I think that my past experiences make me who I am and I would never change any part of my experience. Although I pray to stop enduring pain and tests, I know that I am strong enough to deal with this.
I can harp on the fact that I just went through two bad scopes in two months and one was an endoscopy. I was supposed to be sedated for it and I was fully awake. It was honest to God, TORTURE! I just could not believe that she went through the procedure. She knew I was allergic to the sedative and gave me Benadryl which is honestly insane cause who really gets loopy with Benadryl ? Well like I said I can harp on this but I have to move forward and this has been bringing me down everyday so I just can’t keep it on my shoulders.
I will be going through another scope on Friday but this one doctor is going to be in the room but my surgeon and my nurse practitioner will be in there as well so I feel much better about this. I know that I will be sedated correctly by anesthesia and hopefully it all goes well. I am still having bad stomach pain so hopefully this test is the test to end all pain and tests.
Watching my family storm through each challenge with me is a reassuring feeling that is indescribable. I love each day more and more and respect them. Sometimes I stop and think, “What if it was my child?” or “What it is was one of them?” so for that I am thanking that I don’t have to watch someone suffer because its hard to watch a loved one go through everything I have gone through.
Otherwise, the Kings Donate Life group, which I run has been keeping me busy and inspired as always. I will be teaching a class of nurses tomorrow about organ donation and I am excited about that so I will let you know if I get any sign ups on the spot.
Be well, Live every moment grateful and most of all, Be Happy that you are you!
Holidays tend to be a time where I reflect on my life, good and bad times. I think that I am extremely lucky to be where I am now its just things aren’t “there” yet.My health has been stable, thankfully, and I recently found out that I have no rejection in any of the organs. The testing was terrible, painful and uncomfortable, but the results are amazing! I am wishing all of you a wonderful Christmas and nothing but good health n the New Year!
See you in the New Year!!
These last few months have been rough for me. I was diagnosed with nocardia, which is an infection in the lungs that immo-supressed patients get. I have been getting sick and switching the drugs for treatment. On top of that, yesterday I was diagnosed with steroid-induced diabetes. I am currently taking insulin. Its actually crazy. I haven’t caught a break here. I’m trying to keep busy these days. For example, I am almost finished with my career diploma in a few weeks. I have just 4 chapters left and I am done! I will then get my career diploma online from ashworth college in nutrition. Maybe I will become certified. Who knows what the future will hold. Also I have been speaking a lot these days to students in various colleges about organ donation. I’m actually speaking for F.I.T this Monday night. Also I am in charge of Brooklyn for the New York Organ Donor Network so Im holding my first event, this Tuesday! Its from 5:30 to 7pm at 2176 Flatbush ave in Brooklyn. We will be talking about how I can change Brooklyn for the better and get more volunteers.
I woke up with vertigo today so I stood in my PJ’s all day to relax and now I will distract myself with a movie. Times have been tough for me. I just can’t seem to catch a break. It’s always one thing after the other with me. I just want to lead a normal life. I’m doing my best and living life to the fullest but I hope it gets easier to do this.
I was recently in the hospital for a couple of days due to pneumonia in my lungs. I am feeling better slowly day by day. I am on tons on medications to help get rid of this for the next 10 days. This shows the importance of hand washing, paying attention to others, and careful I have to be around other people because I have a compromised immune system. I never realized how bad being sick after transplantation was going to be, but let me tell you it kicked my butt! Well I am in school now for the month of July, although missed a few days, I have a lot of studying and making up to do but hopefully will be able to complete this course. I am taking Biology:Anatomy and Physiology and its intense, especially when you don’t feel well. Well the month of July might be scattered blogging but I will do my best to get you all updated. The day of freedom is July 27th!! Please hope that I will make it thorugh 17 more days of this class!
Last Friday my J-tube fell out which is the feeding tube in my small bowel. I had a problem getting it back in so we went to the Emergency Room. I hate that terrible feeling of uncertainty. Once I got there, I was there for hours. The doctor at Columbia was awesome but unfortunately was unable to find a feeding tube in the entire hospital. Its all about politics. I was completely and utterly embarrassed for them and shocked that they didn’t have a feeding tube. I went home with a NG tube or a nasal gastric tube in the track, just to keep it open. With no feeds over the weekend, I had such an incentive to eat. It was amazing, I was eating and it feels normal!!
On Monday I went back to clinic and they killed me trying to put in this tube. It was eventually put in, after clamps(medical scissors) were place in the hole to dilate it. I was sore for the entire week but am now back on my feet and pushing to eat. Today I had American white cheese for the first time, granted it was a bite but boy o boy it was great. I eat turkey sandwiches, chicken cutlets breaded and chicken legs. I had a pop tart for the first time the other day. Also I have been eating waffles and trying to expand my menu slowly. I just made myself a chicken meatloaf so I will let you know how that goes but it sure smells great.
Well the good news for me was that Dr. Kato placed the J-tube without interventional radiology and it was studied for placement, and it was in the track. This was a blessing in disguise because I am eating now more than a week ago. I will keep you updated on whats going on in my life and the past experiences we are going to all talk about!
Welcome to this blog. I hope everyone feels at home and the abilty to talk openly about who we are and what we are all going through!