Feeling blue

[Jodalena]

Just feeling down this evening thinking about what lies ahead, the daunting search for a new (used) kidney. It feels like such an unnatural situation to have to find someone to donate, like being told if you have an infection that you have to beg a pharmaceutical company for an antibiotic. It's hard to keep up the energy to fight to save my own life and not spiral into all kinds of bad thoughts.

[Hidden]

"... like being told if you have an infection that you have to beg a pharmaceutical company for an antibiotic."

I think I like your chances of finding a kidney better than your chance of getting something from the big drug companies. From when you posted this you've already put 5 hours behind you. Just 19 more and you've made it to one day. Take them one at a time.

Keep in touch.

[Jodalena in reply to Hidden]

Yes, you're right about big Parma and I like the one-hour-at-a-time sentiment. Thanks so much for your support.

[Zazzel]

Sending you thoughts of strength and encouragement. Maybe this little meditation on YouTube will help ease your worries. You can listen while you sleep. youtu.be/nysSZ6UCOYg(Not working as expected?)

Thomas Hall has many others. His videos have helped me me when I'm worried or anxious.

[Jodalena in reply to Zazzel]

Thank you Zazzel. It feels good to have your support. We've all got to stick together. The meditation isn't quite my thing, but I appreciate your sending it.

[Kathryn471 in reply to Jodalena]

It works and so does hypnosis. RNS has a hypnosis person who sells who cd on Amazon. She is a transplant. Her Name is Rubino last name

I suggest you use all tools to get through this..

[Dustypye]

I've been there...heck, I AM there. You have to keep fighting. You'll have to fight the doctors and dietitians and social workers and hospitals. But you have to fight.

[ddwebangel]

Jodalena Hi. I have to ask why do you feel like you have to do all the work? Have you been to the hospital and met with the whole transplant team and to be put on the list? I have had 2 kidney transplants and since my last one from 2001 a lot has changed. Besides going on the UNOS list there are other ways to also find a living donor. Does your hospital have the share program? I don't know much about it but my sister & I are going to the course next month and I need to read the info given to us. There is also a person who started a FB page to help people find a living donor. Type this: Our Daddy Needs a Kidney-Team Callaway into the search on FB. The person Kristi Callaway started this to find a kidney for her dad. With all the social media now a days you have more of a chance getting the word out you need a kidney. There are still a lot of nice, wonderful people out there and to donate a kidney is even less intrusive.

Having CKD is very challenging. Between doctors, diet, medicines and just trying to live one day at a time is a lot. Like others have said take it one day at a time. Hope I was of some help. You are not alone. We all have CKD in some form and we need each other to lean on for support. You are in my prayers. You can always contact me.

[Jodalena in reply to ddwebangel]

Thank you so much ddwebangel. I'm not down to GFR of 20 yet, probably have another 4 or 5 years, so I'm not on the list yet. Where I am the wait is 6-8 years, so I'm really hoping for a preemptive living donation. I'm also not on Facebook and really don't want to be, although I know it will help. It's just hard knowing I need to really promote myself and cast a very wide net to find what I'll need down the road. As I'm sure yoy know from your experience, waiting to get sicker before you can get help really sucks. I'm glad I have your support and example. One day at a time.

[ddwebangel]

Hi Jodalena. You can contact me anytime even if it is to just vent. I am not an expert and everyone is different as I'm sure you know. I have to tell you even since my last kidney transplant in 2001 so much has changed. I am very confused. Both my kidneys were cadavers because no one in my family matched so I waited when I was on the list. Honestly I joined here because 1) a hospital refused to put me on the list so my hopes were dashed and it made me very depressed on top of other things. And 2) There is nothing out there to help CKD people if they get denied to be put on the list. All hospital, nkf and other sites make kidney transplant a positive, but in reality a transplant is not a cure all. Other problems develop and come with it. That's why I joined. But a lot of people here are not on dialysis for whatever reason and doctors are saying lets try to get a transplant before dialysis which isn't always possible. Honestly I didn't think I would still be on this earth. And there are days I wish I wasn't here. My main support was my cat Sophie. She was my rock and I had to put her down because of old age. I can''t get another cat because of a clause in my lease. And I wish I had a magic pill I could give to everyone who has kidney problems. But with the internet and social media finding a kidney can be easier. I read a lot of people saying they don't like to put themselves out there like a needy person, but there are still good people in this world who want to help. Plus the surgery for the donor is so much less invasive??(did I use that word right). Sorry I went on. I don't want to break rules here but I started a blog and I am going to put all info I know & learn on there then share it so people can see maybe other options. I never wanted to be an advocate but I think God said OK now you are going on this journey. I did a lot at my church before I got sick and what makes me happy is helping others. I have been that way all my life. Again sorry for going on. You will be in my prayers and keep in touch. We all need to help each other stay strong and know we can get through this one day at a time. Take care.

[Zazzel in reply to ddwebangel]

DD, not sure if I sent this article to you before about artificial kidneys they are working on so people won't have to wait for human donors. They are doing trial studies right now. I think they are taking on people to test it. Here's the article. There are several articles out there regarding this. meddeviceonline.com/doc/wor...

Sounds scary, but hopeful.

[Jodalena in reply to Zazzel]

Thanks. Sign me up.

[ddwebangel in reply to Zazzel]

Hi Zazzel. I have a friend who graduated with me who is on dialysis and has been refused twice to be put on the transplant list. He herd about the bionic kidney and put himself on the list. He told me about it and I have done some research on it. As far as I know they have tried it in a pig and it worked great. They are working on trying to get more grants and businesses to take a risk and donate money to try it out in a human. I think it is a wonderful thing and hoping they will start human trials end of this year 2017 or the beginning of 2018. My brain goes into overdrive lots of times on stuff and right now it is in overdrive trying to think of a new way to do dialysis or clean the blood before receiving a new kidney. And I don't think there is any other way. My hope is that this bionic kidney will be Gods saving grace for people who come down with CKD and all they would have to do is have the bionic kidney transplant and won't need dialysis at all. That would be a wonderful accomplishment in the medical world. Then someone create a pill that will cure ALL cancers and so on with other medical diseases.

Thank you for reading my posts. I'm here if you ever need to vent or have a question that I will do my best to answer. I may have been sick all my life and had 2 kidney transplants and now on dialysis for my third time, but a lot has changed and I need to read up on CKD. I'm how they say still thinking the old way. But I am learning from people like you and the others here on this site. So Thank You. Take care.

[Zazzel in reply to ddwebangel]

The new technologies are amazing indeed! I even heard that someone printed a working heart on a 3-d printer. Wouldn't it be wonderful to be able to print organs and limbs as needed. Stranger things have happened. Who would have thought when I was a kid that we would all be walking around talking to people all over the world on a tiny hand held device that more people than not owned? That was only in sci-fi movies.

I hope your friend gets on the trial and it works for him, then I hope you can too

Sending blessings your way!

[Dustypye]

I completely understand. I explained it to my best friend like this: I can either hope my wife's a match, in which case she gives up a vital organ and undergoes a surgery. Or, I can hope I'm matched on the transplant list, in which case, someone lost the person they love and I'm benefiting from it. He had never thought about it. The idea stunned him. He had no idea about the emotional side of this. The guilt you feel.

I've found comfort in reading and posting on this message board. Just knowing that you're not the only one (you're not). And that you're not alone (you're not). This too shall pass. There will be a day when you'll look back on this and remember how you felt, and you'll be so glad you kept fighting.

Also, find a good therapist. I did and it has been a huge help! And keep posting and reading. You're not alone.