What it’s REALLY like trying to get a kidney transplant

The first thing I did when I was told I needed a kidney transplant was start to research all about the process. Online they make it seem so peachy and easy. My experience has been anything but. The first and most valuable piece of advice I got my my nephrologist at the hospital was you call and you don’t stop calling until you get an appointment.

Unfortunately, this process is not something you can do all on your own and it requires a lot of back and forth.

I am currently on the waiting list at Wake Forest Baptist Hospital, and I have been working with them for my living donors. According to their website they’re supposed to have an “expedited process” for people with living donors; and they give a general timeframe of three months waiting for those without living donors. (Here’s the link for those of you who want to see for themselves: http://www.wakehealth.edu/General-Surgery/Abdominal-Transplant/Transplant-Surgery.htm )Let me tell you right now this is INCREDIBLY inaccurate. First of all my paperwork was sent in on February 8th, (I remember this date specifically because it is my moms birthday) my dialysis center received a notification back that it was received and that I had been “accepted” to be a patient. Well after a few weeks of calling around to see what the next steps were I finally found out that my application had been “lost” and I would have to re-apply and be approved by a surgeon again.

So finally after re-applying I as well as my dialysis clinic got a second letter confirming my acceptance and in that letter they stated they would be in contact with a date for my education class shortly. Well after waiting weeks I called and called and called, and finally after waiting MONTHS (yes months) I called and threw fit because my most likely living donor (my sister) needed to have the surgery over the summer, as she works at a university and it was already April. Finally they rushed to get me into to the education class, which they acted like a big deal.

We received a packet in the mail which detailed all the information you need to bring with you to the class, all the appointments you need before you get a transplant, as well as some forms you need to fill out and bring with you. So I went around collecting all my medical records (getting my blood type was ironically the hardest information to find, although I had received a blood transfusion months earlier and I have had multiple surgeries) and showed up to my education course with everything ready and 4 living donors.

When I arrived at the education course I was shocked. Not only did most people not fill out the forms that were mailed to us, only 8 out 20 people showed up for the course. YES you read correctly 8/20…. for those of you bad with fractions that is 40% as in less than half. So 12 people didn’t care to come to an appointment for a literal life saving surgery. The best part of all is they didn’t even attempt to call people in to take up the vacant spots, and it makes me wonder how many times could I have been in this “always full” education course in the prior weeks when they lost my paperwork and I was waiting for a spot to open up in a course.

Well on the day of the education course a very nice nurse saw that I had all my stuff together and came in halfway through the course and said “we had an appointment open this afternoon would you mind staying after so we can test you” obviously I was like DUH ILL STAY OBVI IM TRYING TO GET THIS SURGERY LIKE YESTERDAY. So we stayed and I got all my testing done except for the stress test which I had to go over to the hospital to get, and they scheduled that for me before I left and gave me instructions, and directions so we could return in 2 weeks for that.

After I completed that testing for my living donors began, and if I thought the initial application and education process was a mess little did I know what I was about to face. First of all as the recipient they don’t tell you ANYTHING. Literally you don’t know who they’re testing, or if they’re testing anyone, and the living donor coordinator literally won’t even talk to you. I slightly understand this, they’re the advocate for the donor, but they should at least be able to tell your coordinator what the heck is going on without revealing any medical information. Like hey, one of your donors was ruled out but you have X more on your list.

As the living donor, they will completely forget about you if you’re not right on top of it. Luckily for me, I have known all my living donors and they are pretty good about keeping me in the loop as to what is going on. Multiple times I have had to call, as well as my living donor, to complain that nothing has gotten done or nobody knows what’s going on at all. Three to six weeks go by and nothing has been done and they offer no explanation as to why.

So slowly donors get ruled out and three months turns into 11 months with no end in sight.

Keep in mind during this whole process they wanted me to go inactive on the waiting list for a deceased donor, which I did initially but after dealing with them and seeing how incompetent and slow they were I decided to go back active as I am fairly certain I would never get an update to go back active on the list, and therefore never would be active.

So if you’re waiting to get a transplant, strap in it’s a bumpy ride, and make sure you’re ready to annoy the transplant center (I literally recommend calling once a week so you know they’re working on it).

Also, if anyone who has any pull is reading this PLEASE change your policies so recipients can know something and we aren’t just sitting here in limbo waiting, also Wake forest needs to consider firing all of their administrative staff, or hiring more if they’re seriously that bogged down that they continually lose people’s medical records.

Lastly, if you want to donate me a Kidney, or are willing to be a paired match (basically you donate someone else a kidney and their donor gives me a kidney… more information here: https://www.unos.org/donation/kidney-paired-donation/ ) please contact Colleen Sheehan at (336)713 – 5675 or csheeha@wakehealth.edu and say you are interested in being a living donor for me, Tracy Self, birthday 4/2/91.

Going Au Natural: My Slow Switch to Natural Products

So, with all the time I have had on my hands I’ve been reading a lot on the benefits of switching to natural and organic products. Also, I believe, although this is not backed by science in any way shape or form my toxic environment (mentally, physically, spiritually and all that jazz) helped to accelerate my kidney failure. So, I have made the decision to lessen the amount of chemicals I am willingly putting in, or on (and therefore by default in) my body.

Notice I say lessen. I say lessen, because I am not going on a Kourtney Kardashian style gluten free, dairy free, soy free only organic diet. FORGET THAT. I love gluten, I love cheese, and at this time I plan on keeping both of them around. I also say lessen because I literally have an addiction to makeup (although, ironically, I probably only wear it like once a week because I’m lazy) and 98% of makeup, and 100% of the makeup that I own is not organic or natural and I’m not giving up Urban Decay anytime soon. Actually I take that back, I own one lipstick and 4 lip crayons, and one lip primer by Bite beauty, which if you didn’t know is a company that makes their cosmetics out of all edible grade ingredients, however, their formulas are not my favorite at all. Basically, overall I have found that natural and organic make up just isn’t on the level that chemical packed makeup is on, and I’ll keep exploring it, but the chance of me giving up all those pretty potentially toxic beauties are slim to none.

So I started my transition to natural products by going to the first store that came to mind for natural products, LUSH. If you don’t know, LUSH is a potentially overpriced shop that has recently become higher on the radar because of  their vast selection of bath bombs that are in an array of colors and scents, and yes, some even have glitter! Ever dream of taking a pink bubble gum scented sparkly bath? Well this is the store you go to do just that. BTW that bath is going to cost you $8 plus whatever the water costs but it will be fun for the 20ish minutes you’re in there until the water gets cold. Now I have used some lush products on and off from about 2012, so I was not unfamiliar with their offerings, however I’ve never made the complete switch. So I went to the lush store, and mentally prepared myself for coming out with a painfully expensive tiny bag of delicious smelling products.

I ended up buying the following products: Coalface (a bar soap facial cleanser), Imperials (moisturizer), Respect Your Elders (soap), American Cream (conditioner), Jersey Bounce (shampoo), and Tender is the Night (massage bar – to be used as lotion). I actually am not unhappy with any of the products performance. I am, however, unhappy with the price. I figured though this would be a good an investment, and easy way to wean off of my formal chemical heavy products, so I don’t loose to much sleep over it.

Products that I am highly considering not switching: Coalface, and Imperials. I think my bar of coalface cost $9 and I feel like I have barely made a dent in it. I have pretty amazing skin (thanks genetics) and I’m pretty sure I could basically just throw water on my face and have minimal breakouts, but this leaves my face feeling super clean. I thought I wouldn’t like it because it was a bar not like a liquid/gel that I have traditionally been using but it still lathers really nicely, and has a nice gentle exfoliation. Imperials was $25 for 1.5oz which I know is steep, but this stuff is so thick I use such a little amount. My skin is normal to dry and I feel like this offers plenty of hydration without making me oily. Also, for what its worth my sister also likes it, but she has the same skin type as me.

Products that were good but I will not be repurchasing: Jersey bounce, American Cream, and Respect your Elders. Okay lets be honest, there are 1000 other natural soaps out there, and I didn’t really find that Respect your elders lathered super well, and it smells okay but not so good that I’m going to be buying it again. Jersey bounce was good shampoo I just HATE the packaging. It comes in their traditional black tubs (which if you save 5 of them you can return them for a free face mask) but it means I was scooping out WAY too much product. I thought at first it didn’t really lather, but once you add a lot, not a little of water this stuff LATHERS. Anyway, it was good, but I use it way too fast and it costs $10 for like 10 uses so like NO bye Felicia, I’m over it, trying something else. The American Cream Conditioner was good but nothing to write home about. It smells delicious, but doesn’t leave my hair exceptionally soft or anything. I did use this way less than I used the Jersey Bounce so I still have some left, which I will be using up.

Undecided product,Tender is The Night. I love the way this smells. It’s also pretty affordable, but you literally can only wear this if you’re completely okay with being greasy feeling, which I don’t like to go out in public feeling greasy, so this is a night only product for me. So I guess I will decide later if I’m using this still.

In the meantime, I have purchased The Honest Company products to try and see if I like better, because they free of harsh chemicals, cruelty free, and many other things, and WAY cheaper, also if you’re buying 5 products over the price of $7.19 you can save money by creating a bundle. I’ll write more on this in another post because we will be here all week if include it, and this post is already too long.

I also decided to switch my deodorant. If you’ve not been living under a rock, you should have heard by now that the aluminum in traditional deodorants have been linked to breast cancer among other things. If you haven’t just google search “aluminum in deodorant” and decide for yourself. I decided to purchase the LAVANILA Sport Luxe Deodorant because YouTube made me do it. I’ve heard about this “Healthy Deodorant” everywhere and the YouTubers supposedly love it. Well let me tell you something, this stuff does NOT work for me.  I think something in this product makes me sweat more, because I literally smelled WORSE using this than using no deodorant at all (yes, I tested this theory). I read a lot on switching to natural deodorants and how its rough for a couple of weeks because your armpits are detoxing from all the years of using your choice of poison was (mine was pH balanced Secret) so at first I thought it was just that, then I decided one day to experiment and wear no D.O. (I know I’m a gross human being come at me; but in my defense I’m dying, and I was just laying around the house that day anyway) and magically I didn’t stink. I also started doing more research and found a couple of studies that suggested the less you wear antiperspirant the less you sweat and stink. Which I think is true, because The Healthy Deodorant isn’t antiperspirant just deodorant, but I think the film of goop under my arms just blocked airflow and increased sweat. So now I’m trying a spray on formulation also by the Honest Company.

So I literally cannot believe you read all this about the stuff I’m putting on my body, but I hope this inspires you to do your own research and start to remove toxic things in your life, be it products, humans, or other things.

About Me

Hello! I’mYouTubeImage Tracy and up until January 2016 I was your average, early to mid-twenty’s American white girl. January 8, 2016 I was hospitalized for kidney failure, and shortly after I was diagnosed with end stage kidney disease.

I started this blog a while a go, and like most people, didn’t keep up with it. With my newfound free-time, I have decided to resurrect this blog to, A) give me something to do, and B) keep everyone updated on my treatment process.

I love to read, love fashion, and beauty products, so I will be making a variety of different posts, if you’re here for one type of post only, please look for the post type under the categories menu.