In Sickness And In Health: 2014

Hello everyone,

Its great to start to feeling back to myself. I realized I hadn't updated by blog since October and I was in the process of editing a video for you guys on my latest updates so far and ended up taking a turn for the worst in my health and not getting it out there. I’m about a week fresh out of the hospital so I ask everyone to please bare with me in the post if their are any spelling or grammatical errors or I don’t make sense, I am still adjusting to all the new life changes and rehabilitating myself from my hospital stay and life changing event. So here is a little update. Last time I wrote I spoke of my gallbladder surgery and hospital stay that was successful and I ended up going home and recovering fine even tho I went into the hospital for other reasons than that mostly being my kidney, not feeling well the edema happening again and also for constant radiating body aches. The follow month to the exact date so November 4th I had another surgery removing what they thought was one but turned out to actually be 3 big tumors from my breast to test for cancer, they came back benign thankfully and I made a full recovery from that surgery as well. Since then like I said I went to the hospital for completely different reasons then what they treated me for. From November till now I have had constant body aches so that I’m always in pain and have been on pain meds every day or every other day for 6 months and was still continue to bloat and have an overall unwell feeling. I went to a rheumatologist and they also diagnosed my with fibromyalgia after running a complete lupus and autoimmune disease panel on me coming back with two false positives. The fibro happened because of the constant stress on my body for the13 years with my kidney disease and I was living everyday in excoriating pain during the flare ups. After being sick for 13 years I know my body and I know when I’m doing well and when something fishy is starting to happen. I kept up with my nephrology appointments and in November my function was 22%. In order to be on referred to transplant for my kidney disease you have to have two lab kidney function tests under 20% function so I was still too high. We waited about 4 months because of shoddy referral work of someone messing up my paper work and I was finally seen again in March which I was very unhappy of missing 3 months worth of nephrologist (kidney doctor) appointments as we were monitoring my function closely to try to transplant without dialysis. In March my kidney function had dropped down to 18%. This was bad but good news as we could record this down for transplant. My doctor told me to come back in two weeks and we would record our last one to get me referred over to Loma Linda transplant center. My function seemed to be low but holding in their strong he estimated maybe a transplant by December if we found a match right away and if my function held up (I was losing about 1% a month), completely skipping the step of dialysis. When I went to the doctors that next apt my function had then dropped to 16% and I realized the harsh reality that it went from dropping 1% a month to now 1% a week and that by 6 weeks I would probably start dialysis. For those of you that don’t know you start dialysis at about 11% kidney function. So we got referred to transplant I made my orientation and testing date for June 12th which was the earliest available appointment and was crossing my fingers and saying my prayers that my function would hold out for as long as possible maybe even go back to dropping 1% a month. That whole week I wasn’t feeling myself and left my fiance house for doctors apts. When I went to my primary doctors my blood pressure was 190/130 normal is 120/80 so it was extremely high. They sent me to go and get labs done which my nephrologist was angry they let me go at all when I called to update him on the status of my health as my nephrologist is in Loma Linda and my primary doctor in Rancho Cucamonga. As I was going for my labs I was just feeling completely out of if and faint. I remember going to get my labs but they were closed for lunch and trying to swing the big door to open took all of my strength that I nearly passed out. I knew at the time something was not right and I needed to go to the Emergency room. We rushed me over to the ER where they pumped me with fluids beside my cries for them not to because I knew my body could not handle the excess fluid intake as I was already having bad edema that wouldn’t go away on its own. The next thing I remember because I was feeling so bad with vomiting and just out of it, was being in twilight with my head and neck on an operating table awake but not feeling pain getting an emergency catheter stuck in my neck to perform emergency dialysis on me. The first time I did dialysis I was petrified in fear. I think it was the most still I have ever been in my whole life. I couldn’t look at my neck or down at the tubes of blood and sat like a statue as my family and fiance watched with tears rolling down my face. At that point it was the hardest thing I have ever had to endure. The first two sessions they cleaned by blood without any fluid take to get me use to the 4 hours of laying there. The point of the dialysis machine for those of you that don’t know is to clean your blood. Your kidney is your filtration unit; what it does for you is filter your food and liquids and other ingestibles that are processed and broken down in the kidney and out puts it as urine. Thankfully I still have enough function to urinate on my own but am now down to 6% function out of 100%. My body however could not get rid of the excess fluid on my own. I went in prehospital weight about 110 lbs and gained 24 lbs in fluid retention alone. So my last dialysis treatment I had 4 in the hospital with a week long stay they pulled fluid from me for the first time about 2.0kg which if you think of the saline bags of fluid they give you at the hospital thats the amount they are pulling so 2 of those. I was then released from the hospital on no rest I hadn’t slept and was swollen beyond recognition. The edema was so bad in my face that it had offset my whole jaw and I had to take a muscle relaxer to ease the twitch in my jaw and was drooling all over myself and not able to talk. I felt like I had the intelligence of a third grader, and was also unable to write because I was so swollen. The very next day I started outpatient dialysis I am now set up for every Monday, Wednesday, Friday. I go in and sit for 3 1/2 hours while they pull fluid from me till they get me back to my dry weight. For those of you that have this disease and are worried about the feelings of dialysis for me the first week did not hurt. I had so much fluid gain and was so out of it that they were pulling 2.5 every time. The first outpatient I felt my jaw snap back into place and by the second my face started to look like me again. I am now a week done with out patient and I’m almost at my dry weight (pre hospital weight without the fluids) which is where they want to get you. The first 3 days getting home from the hospital I did not sleep. I was in fact a basket case. I had reached delirium and the doctors accidentally dropped my blood pressure to low. That third day was the hardest that I had to endure. I went from living with my fiance and being a normal young woman to having my whole world turned upside down and moving back in with my parents and supervised by my wonderful grandmother who has taken the time to really help me in this stage because I need the extra help until my catheter is healed and I’m feeling back to normal. My fiance works full time with maybe two weekends off a month and lives about an hour and a half away with our dog who I hadn’t seen in a month now and for me emotionally the adjustment of not having them everyday was weighing heavy on me. I cried basically every day for a week in fact there’s only been about the past 2 days that I haven’t broken down from one thing or another. So back to what I was saying that 3rd day was the hardest they dropped my blood pressure and I had to go to emergency care and they gave me something for sleep. I told my parents that if I didn't sleep that night they would have to have me readmitted to the hospital and seriously think about putting me to sleep because I knew I had reached my breaking point mentally. The sleeping pill didn't knock me out. Luckily it cleared my head enough for silence and for me to make my own good thoughts instead of negative ones and I got 4 hours of sleep that night, which to a lot of people might seem like nothing but when you are running on 0 its life changing. I woke up with a clear head and so thankful even tho my current circumstances because no matter how bad they are they are better than the alternative of death. From that night on I continued to get sleep on my own without any medication and continued with my dialysis session and got myself up and walking and out of the house. It’s been about a week and I am finally feeling somewhat myself again. I still have bad days and good and like I said only 2 days of not crying. Its going to be an adjustment but hopefully we will get me back to me and I will then start the journey for my transplant. Today I had my week check up following the visit when they dropped my blood pressure too low. I’m 118 lb. my blood pressure was perfect and they cleared me to wear pull over shirts which was nice because I’ve been living in button up PJS. As far as dialysis goes for those of you who have this disease and are reading or know someone going through it or for those of my friends and family that would like to know it is hard. Afterwards you have the worst head ache, are so dizzy and drained you feel like you could sleep for 100 years and it takes some getting use too. The first sessions were scary I couldn't get myself to look down at the tubes of blood or look at my catheter in the mirror or on me, it was too much too fast and I needed to take my time to process everything. Now that I’m a week in, I can look at my catheter in the mirror I can touch it I can look at the tubes of blood and touch them during dialysis and it isn’t too scary for me anymore, whats more scary is the unknown of what is next for me. This disease is an incurable disease and the only thing that will save me and give me a chance at a somewhat normal life now is if someone donates a kidney and I have a transplant. Even then I will have to go through that surgery and anti-rejection medicine regimen and I realized I will be on a handful of pills for forever if I’m lucky. Its very hard to accept and take in that this is now my life and will be for the rest of my life. I guess being young with this disease I coped by keeping myself a little in denial, I never thought I would end up here and nothing can mentally prepare you for the change and the adjustment you must make in your life to survive. I’m taking baby steps and putting my faith in God that this is all for a purpose what that is I’m not sure but I’m hoping he will keep me safe on this journey he’s embarked me on. Now that I’ve removed most of the fluid we are starting to suck less from me because its a give and take of fluids a balance to filter my body. My body does in 3 1/2 hours what yours does in 24 so you can imagine the stress dialysis days puts on me. I’ve had nothing but good experiences since I started beside yesterday in the last two minutes. Since we are getting close to my dry weight they are taking less fluid this time 1.5kg and I thought this was going to be a breeze only to have the machine feel like it was slurping blood from my heart like someone was sucking on a straw is the best way to describe it but they lowered the pull and it went away and then the last 2 minutes I felt like a 500 lb. man was sitting on me and it became very hard to breathe. When anything like this happens you are suppose to let a technician know right away there is more than one on the floor for outpatient and I did. I then needed oxygen and to stay later because I started getting little flutters of cramping in my chest, which they say you will in your hands legs chest, head aches and as we get closer to my regular weight because its a constant take and give I will feel more cramping until we find exactly where I need to be as far as taking every time I come in to maintain my weight and weight gain because you do gain weight which my body now can’t lose on its own so it is in turned sucked out at dialysis. I just wanted to say thank you to everyone for all the prayers and out reach that you have done for me in this time it doesn’t go unnoticed or unappreciated. If you reached out while I was in the hospital and I haven't or hadn’t gotten back to you I apologize I’m just now starting to come back into the social outlets of the world and use my phone again and feel like myself so hopefully I will only continue to get better. For those of you wondering about the emergency catheter in my neck it is connect to the vein and artery directly in my heart. When I go to dialysis one tube pulls the blood and it goes through a fake kidney or dialyzer and cleans it and then returns it via the other line. I’ve decided that my blogging is going to be a healthy outlet for me so for those of you who have been following my sickness, are just starting to read or what to keep following me I’m going to be blogging the good the bad and the ugly of this SILENT ILLNESS. My disease isn’t silent anymore, I’m officially handicapped and in end stage renal failure and making the best of a bad situation. To end on a good note and not a sick one some good things that happened to me while I hadn’t updated is I got engaged in November to the most amazing man I could have ever hoped to meet. He has stuck by my side through this whole experience and isn’t going anywhere. I cannot stress how lucky I am to have someone so caring and selfless, loving and supportive in this time that would stay with someone going through this kid of sickness and disease. It is more than a lot to handle and I am beyond blessed to have him in my corner to keep me calm, strong, motivated and pushing on. I also got a fur child before I was sick, who I now miss who heartedly everyday and hope within a month I can get back to where I once was and only be away from them on my dialysis days. We got her at 8 weeks and she is now almost 5 months old, a sassy little beagle baby that takes after her mother in every bad way possible. I was planning for an October wedding but due to the circumstances the big celebration will be on hold till I get better (positive thinking). And so far thats about it on this journey that I have been on. So that’s what I have been doing the past 6 months trying to fight for my life and adjusting to all the changes, I’m still me but I really see what life is all about. It puts into perspective the things that we worry about on a daily basis are so unimportant if you have your health, and the people you love. I harbor no more hate in my heart and forgive people for their wrong doings to me even without apologizes. It has taught me patience and humbled me in every way and I just hope that at the end of the day everyone realizes we are all the same, we are all human. Every one goes through their own troubles trials and tribulations, we all make mistakes on a daily basis but I think that if we all start having more compassion for others we will ultimately live much happier lives and really appreciate what we have instead of wanting more and will also be able to be open and relate more to strangers and new people. If you took the time to read this thank you so much! You guys are the best support system and I am so blessed to be able to share my story with people that actually care. Until my next update, Thanks for stopping by

XOXO

Tashara