Updates!

 Last week I met with the nephrologist (kidney doctor).  My numbers while still not good are holding steady at the moment.   She said as long as I'm still feeling ok and numbers don't get horrible on some tests, our goal is still transplant first.  What this means is I don't have to start dialysis yet.   Honestly, I assumed I would be going in and begging to just push it off till spring break.  The training is 5 full days.

I was very happy with this news.    Overall I'm feeling pretty good for as bad as the kidneys are.  I'm always tired and there are days that I hurt some.   But I'm thankful- most days I don't feel to bad.  I will continue going weekly and getting my PD cath flushed.  We did figure out yesterday the tube is what is causing massive pain in my right side some days so I may end up having to go back to surgeon to have it checked.  We will see.

In other news- I purchased a car yesterday- I was able to put down the money from insurance and kept my payments very close to what I was already paying.   Hopefully the insurance check gets to the bank asap and pays off the old loan.  Bad news...car is not available for a few weeks, but I'm really excited.   

Thanks for following along in my journey.   Hoping it stays pretty steady for awhile!

Types of Organ donors

So now that I am officially on the Transplant waiting list, let's take a moment and delve into what that means. Being active on this list means that I am waiting for a deceased donor. There are a lot of factors that go into that as well on whether they would work or not for me. The approximate time frame I've been given for this list could be 3.5-5yrs before one becomes available. However, if this is the route I get one, the surgeon feels confident that I should get a good kidney as I'm mostly healthy. The longer I"m on the list the closer to being run through a data base more happens. A match is determined by my blood type (A) and by antibodys or lack of.

If a perfect match comes up they could skip ahead and call me up. It's a lot like adoption, the wait and see or the phone calls that may not happen. There are over 100,000 people on the waiting list for Kidneys. 

 I could also recieve a living donor kidney. Apparently we only need one kidney. There are 3 types of living donor donations. 1. non-directed donation- you don't have anyone in particular that you are wanting to donate your organs to. 2. Directed donation- you are being tested specifically for a person 3. paired exchange- Two or more pairs of living donors swapping to make a compatible match 

 While we don't need 2 kidneys, donating is a big decision. I could never repay that kindness. If you are interested in learning more, this website is a great place to learn more. It's the national registry for everything (the list I'm on- not the hospital I'm doing it through). According to it there were 6900 living donors last year. A living donor means we can plan when surgery happens a little more (you know summer). So if you are intested in learning more and possibly be tested the first step is to really research what it means and how it will affect you. I believe my insurance covers testing and donation. It also takes you out of commission for a week or so and have restrictions for longer. I do know if you donate a kidney and somewhere down the road something happens and your kidney goes bad, you get pushed to the top faster for a donation. 

 There are a lot of requirements to even be considered. Older than 18 or 21 (depending on hospital) and younger than 65. You must be relatively healthy, no personal cancer history, and women must be up on women appointments. After you call for information, they will ask you a bunch of medical questions to see if anything automatically disqualifies you. If not, then I believe the next step is basic testing- blood type and antibodies. I can get donations from A or O blood types. After that I'm sure you will have to go through some testing to make sure you are healthy enough to go through surgery, though not as extensive as I did. If it's a match and a go, surgery would be in Overland Park, so you would need to be there for the surgery. I know that the donor also has follow up appointments and check ins for a couple years. And if you start this process and change your mind you can at any step---well until after you have it taken out. 

 Please read over the information at https://transplantliving.org/living-donation/being-a-living-donor/   That website has a lot of information and good questions to ask yourself before even calling. If you want to continue, please call 

1. Call Tracey Dickey Living Donor Advocate 816-932-2214

                             Or

2. Go to the Living Donor Website below

 

 

https://www.saintlukeskc.org/form/saint-lukes-hospital-living-kidney-donor-screener

 Thank you to everyone who is supporting me in so many ways- good thoughts, donations, etc.

I'm on the List!!

Great News! I got the call that I was approved to be put on the kidney transplant list! That's a huge sigh of relief. What does that mean? It means I am now going to be in the database for a possible kidney. This could still take 3-5yrs and I'll have to redo testing yearly and blood tests monthly. That's of course a nonliving donor. A living donor could take place faster. In other health news, I have finally gotten through the most painful week of my life. That surgery was a 0/10 for recommendation. When I visited the surgeon, he wasn't sure why I was having pain where I was. He did give me a different pain med that helped and for the most part I'm off it now. I even made it through a 3 day festival (5 days for me) of very long hours. Thankfully I just keep a chair warm most of it and was able to move when needed. I'll be honest, I wasn't sure how that was going to go. It's a festival/conference with over 1800 people and I'm pretty involved in the planning/running of it - which I love doing. And thankfully I did not seem to come home with the illnesses that seemed to be rampant while there. I had my first flush of my new tube and will do that weekly till I start dialysis. I'm still hopeful we can push that off a little longer, but thinking it probably won't be long. My surgery site has to heal all the way so I should have a couple weeks. I know some people have asked about being tested/looking into donating a kidney. I can't even tell you how much that means. I will do a little blog about that in the next couple days about how to go about it. But I could never ask anyone to do that for me, so don't ever feel obligated or like you have to. It's a HUGE thing to do and I know I could never repay that kindness. BTW my car was totalled and I'm getting a nice sum for it that will cover the loan and a down payment. I basically wrote an email begging for communication and suddenly it got done by the end of that day. Now to wait for the funds to come through, which also seems very slow. That was a week ago I signed papers. Thankfully I have a real nice Dad that is willing to take me places and let me steal the car next week when I start driving again.