Please visit http://www.facebook.com/hopeforheather for updates!
Please visit http://www.facebook.com/hopeforheather for updates!
A match has been found! I am so excited I can barely contain it! I can’t beleive it,this is so amazing! I am still getting details but for right now surgery is set for Sept 17th!
First I want to say thank you again for the donations. We’ve raised around $800 since starting this page last summer,which I will hopefully soon be transferring to a new fundraising account. I have applied to have an account with HelpHOPELive,(formerly National Transplant Assistance Fund) where I can raise money for transplant expenses,and they will help me fund raise and come up with ideas for better fundraising. Also future donations to my fund (if I am approved *fingers crossed*) will be tax deductible for the donors. Very cool! I will update as soon as I know my status.
Now for a little more serious topic.
I am very very grateful for the offer of a kidney when you first hear I need one,but if you have no intentions of following through with calling and getting tested,PLEASE don’t get my hopes up by telling me you would like to donate. I am OK with you not offering! Really I am. It is a HUGE deal to give up a working part of your body,I am not going to look down on you or stop talking to you if you don’t offer me your kidney. I totally understand whatever your reason is for not wanting to donate,really! And you don’t need to explain yourself,I’m not looking for your excuse to weed out if you really can’t hand over that kidney,it is yours for goodness sakes I am not entitled to the silly thing! Just please do not offer if you truly deep down in your heart know you would never be able to go through with it. Because that is perfectly OK to not want to donate. Donation is SCARY. It doesn’t make you a bad person to not want to give me your kidney,but it really hurts to have people offer knowing they really are just talking nice to maybe cheer me up or because they don’t want to look bad for not offering or they spoke too fast without looking into the (sometimes harsh) reality of donating. I am completely OK with you not offering,and would really prefer “Oh wow Heather that really sucks,I hope you find a donor soon” than “You can have my kidney!”when you don’t really have any intention of doing that.
The best thing you can do for me if you can not or do not want to get tested,is spread the word about me! Talk about me to people you know,to anyone really,get the word out that I am looking for a kidney and where to go online to find out more. You never know where you are going to find your match,what if it is your cousin’s dog-sitter’s hair-dresser’s landscaping guy?
Looking for a donor is hard,and thankfully I have a good amount of support cheering me on in the search. I am grateful for everyone’s kind words,and I hope you can understand I’m not trying to be rude or mean,I’m just trying to avoid heartbreak. Thank you all so much for all the support.
I hope everyone is having a nice summer. The lovely fundraiser put on by my brother in law a local comic book artist raised $160! I was so happy and felt blessed to have received the donations. This puts our total donations to $760!
Things are going alright at dialysis. I finally have my medical insurance mostly sorted out and I need call the transplant office and let them know that I am covered by medicare now and hopefully we can start testing donors again soon! I am so ready to get the ball rolling again.
I have a friend who is writing about me and organ donation for a college speech. I am hoping to post her speech here when she is finished. Anything to spread the word about organ donation!
I’m also working on a post about being offered an organ,and maybe a little guide to people who are dealing with a loved one who is in need of an organ. There is a lot to deal with and a lot of emotions and it can be a little overwhelming.
Well I’m off to dialysis! Stay healthy everyone!
edit:2 pages in the comic have already sold! Thank you David and Dale for your generous donations!
A local comic book artist has offered to do a fundraiser to help raise money for my transplant. Please visit his page here for more details.
Thank you so much for all of your support!
I really need to work on updating more. Sometimes I just can’t think of anything to say,but I realize I may need to just say anything as opposed to nothing at all.
I’ve been going to dialysis for almost 3 months now. I’m still getting used to my weird sleep schedule as I don’t get to bed on dialysis days until 4am. Things are getting better though. I have my own little routine at dialysis and although the internet filter blocks just about everything I want to look at on the internet (no Facebook or Netflix,boo ) I still have my own little TV to watch. The only thing on late at night is reality TV,but I’ve found some amusing shows and that helps.
I am looking into a non-profit that collects money for me to use after my transplant. All donations towards my fund would be tax-deductible and if I earn certain amounts in donations the non-profit gives my fund a donation as a gift for fund-raising. I really like this idea because it helps people feel safe donating and they can be sure it only gets spent on my kidney transplant costs and not anything else.
I’ve started going to my Krav Maga class 3 times a week instead of 2 and I am enjoying it. I found out I need to work on gaining more muscle mass to help prevent muscle wasting from dialysis. I’ve also had to change-up my diet a bit to include more protein as dialysis strips that out of me.
I haven’t heard much from the transplant office. It can be really frustrating but I know things take time. Testing and all that and making sure people are really willing to donate or if they didn’t realize how big of a thing it is to donate and may have backed out. Which is completely understandable really,donating an organ is a BIG thing and can seem scary,so I have no hard feelings towards people who may have backed out. I just wish I knew if anyone was still being tested.
I hope everyone is doing well,spring is finally in full swing around here and my herb garden is growing like mad. My husband is still looking for a job unfortunately. Things have been kind of rough around here lately. Our savings is dwindling fast and if he doesn’t get a job by the end of June we may have to move into my mother’s spare bedroom. Fingers crossed and prayers needed for a job soon.
Week 2 of Dialysis AKA “Oww my arm!”
My first week of dialysis went well. Monday Wednesday and Friday my sessions completed fairly easily. Wednesday my vein kept spasming so I had to hold my arm really still and in one specific position. Otherwise there were no problems, and I was acclimating to 4 hours in a chair in the wee hours of the night.
This Monday though, that’s a whole ‘nother story.
Monday was a rough day for me. My husband is still looking for a job and I was stressed about that. I was going to have to find someone to drive me home from dialysis because we thought we had lost our babysitter, Monday was just not a good day. We leave the house and drive to the dialysis center, I leave my husband in the waiting room and wash my arm in preparation for the night’s treatment. I find my chair,sit down, get my blood pressure taken and wait for the needle sticks. The tech puts a tourniquet on my arm and then inserts the first needle into my vein. Things look OK,but he has to pull it out a little to get it to show my blood. This was the first problem,but I didn’t realize it at the time, and wouldn’t until the next day. On to the second needle. He gets the needle in, but it feels a little off, I thought “that looks a little close to the bend in my fistula…”. He opens the end of the tubing so my blood flows down the line, puts the syringe full of heparin (a blood thinner) on the tubing and pushes the fluids into my arm. “OWW!” The vein (my fistula) swelled up HUGE and looked like one of those balloons clowns use to make balloon animals! It hurt so bad. He had infiltrated my arm, the needle went through one side of my vein and right out the other, and he just pumped a syringe full of heparin into my arm. My vein is now bleeding into my arm. It takes a couple of minutes to get the needle out, and put pressure and ice on my arm. At this point they are thinking we may continue, so they leave the first needle in. After about 10 minutes the head nurse calls the on call doctor and he said to send me home and to come back as soon as possible (which turned out to be Wednesday morning at 6:30am). The second needle is removed and I have to sit there holding my wounds for longer than normal because I was just given the full dose of blood thinner. My poor husband has no idea what is going on and by now it is 20 minutes past when he was supposed to be able to come in and see me. I asked the nurse to go tell him what was going on so he wouldn’t start to panic. After another 10 minutes I am OK to go and we head home with instructions to ice my arm in intervals of 15 minutes on, 15 minutes off. My arm hurt badly for about 3 days and today is just sore and swollen.
The next morning when I wake up my arm looks horrible,black and blue and just gross. This is when I realize the first needle must have infiltrated as well because the area around where it was placed is also black and blue indicating blood loss into my arm. I was traumatized. It was so scary I thought my fistula was going to tear apart and I was going to bleed to death right there in the chair.
Going to dialysis Wednesday morning was scary. I was so nervous I barely slept the night before. Thankfully I had someone cannulate me who was an old pro. She did a fantastic job and really eased my mind about it all. My session on Wednesday went well and had no problems. YAY
I head back in tonight and I am going to be very protective about who I allow to stick me. My fistula has been feeling weaker since the incident and I want the nurse to look at it and listen to it with her stethoscope. I can’t be too careful and I have to remind myself I have the right to ask for these things!
I didn’t get ANY rest all day Monday because I was out-of-town for the holiday weekend and had to ride home most of the day. I was exhausted at 9pm when I went in to do paperwork for being treated. I got a patient handbook and filled out all kinds of papers about promising to pay, that I understood what was going on, that I received the handbook etc. I got a tour of the facility and talked about hopefully getting moved to the center closer to my house, and then maybe changing my time once I get over there. By the time we got done with the paperwork it was 10:05pm and I needed to be back at 10:45pm to get on the machine.
I came back at 10:45pm. I had to wash where my access is located on my upper left arm on the inside, and then weigh myself. I was shown to my chair and then get my stuff set up. I brought my tablet however using it one-handed proved to be difficult.
UPDATE:I received a call today and was informed they found me a dialysis spot. My first dialysis session will be on Monday the 20th at 11p.m. And there after at 11p.m. on M/W/F. Hopefully something earlier in the day opens up soon.
I want to first say thank you to everyone who has been spreading the word and talking/praying about me. I am so very thankful to have such wonderful people by my side and supporting me.
I met with my nephrologist today and we talked about dialysis. She said the process to start dialysis takes a few days to set up,so I will most likely start dialysis next week or the week after. I was told the morning and afternoon slots are always full so I will most likely start on the 4th shift which she thinks starts at 8pm and ends around midnight. Seeing as it is 4 hours to dialyize if you add in prep time I’m guessing I would get out around 12:30-12:45 midnight. Once I start she said I can apply for earlier times after I get into the swing of things and more accustomed to the dialysis. I would be going 3 days a week for 4 hours a session.
I am both nervous and excited. The idea of dialysis is pretty straight forward,they take my blood out and filter it with this huge machine and then put it back. And then I think “zomg they are doing what with my what”. I know it is all very controlled and very clean etc,and thankfully I don’t have a fear of needles,but this is all very new to me and who knows how I’m going to handle it when it really happens. I was advised to get a numbing cream for my access site because it can be pretty painful.
I plan on bringing my tablet because I want to blog about it and I want to take pictures! I hope they let me use it. I know I can bring a book,and they are supposed to have a little TV set up at each chair,so I could always zone out I guess. I’m not exactly sure how I’m going to do sitting in one spot for 4 hours,my bottom is going to be crazy uncomfortable. We’ll see I guess.
Now I just wait for the nurse at the dialysis center to call me and set up my first appointment.
Oh my goodness what a whirlwind the last 48 hours has been. I received a call on Wednesday evening asking if I would do an interview for a local news station about turning to the internet to find a kidney donor. A half hour later a crew was in my house and filming! The segment aired last night and then again this morning. I feel so lucky to have been interviewed to share my story!
Here is a link to the video.