Hi Sweet Friends.... hope everyone is hanging in there and doing well. I was approved for transplant at Mayo and am so grateful. My dear husbandand wanted to give me on of his kidneys but during his testing they found dangerously low platelets and found he has idiopathic ITP. After 2 hospitalizations he is no longer a candidate to donate. He is such a healthy man otherwise but this condition changes everything. I would never put my sweetheart at risk. SO... now I need to get my story out there and go on the waiting list. I am O positive so my wait could be a very long time. My gfr stays around 12-13 and I have one kidney. I feel really good but know what the inevitable will be if I cannot get my gfr to come up some. I am so scared about hemo that I almost don't want to even do it at all. I know that sounds crazy, but for some reason it scares me. Will I be ok doing it, will it make me so sick it's not worth it, can I take care of a port, will I be a burden on others, will I get infections or heart problems, etc. Many of you have answered my questions on this wonderful site and have offered so much encouragement. Please forgive me for sounding so weak but this is just something I thought would get better....thought the hemo day could be avoided. Can I do it. Do you ever think it is better to just live as long as you can and when the kidney stops working, that's it? Don't want to think like this....life is so precious.... why am I in such fear. It is stupid. How to move past this feeling of dread.... so open for suggestions. The Lord has always been with me and has done so many miracle in my life all these years. There has got to be a way to overcome this. So very sorry to sound so "I" in all this but it is the truth. How have so many of you over ome this fear and how do you cope and manage what hemo does to you???? ALL comments are so very appreciated. Thank you for understanding. ❤️
APPROVED FOR KIDNEY TRANSPLANT BUT NEED A D... - Kidney Disease
APPROVED FOR KIDNEY TRANSPLANT BUT NEED A DONOR...HOW DO I GET MY STORY OUT? So scared about dialysis before getting a kidney.
Don't feel guilty about the way you feel AT ALL. I am right there with you and I am sure there are others who feel the same. Here is some information about asking people
kidney.org/transplantation/...
This is a wonderful link! I learned a lot. I am 31/2 years out from breast cancer surgery before I can apply for a transplant.
Hi Bassetmommer!!! Thank you so much for your kind understanding. I will check out the link and greatly appreciate you guiding me in the right direction. Hope you are doing well and you have a blessed and wonderful Thanksgiving. God bless you as you help so many!!! ❤️🙏
Good morning. The way that you are feeling is totally normal, so dont feel bad about that. When i was told i needed to prepare for RRT in some form I was scared out of my mind. Ive known since i was a teenager that this would be the inevitable outcome (im 52 now) and have always dreaded having to go on dialysis. Anyway, in 2019 the time came and i went to visit the dialysis center and to brigham and womens hospital for a transplant assessment and all that goes with that. My parents were too old to donate and my brother had already lost one kidney to cancer. My nieces were either unable or unwilling to donate, which was understandable. I was beside myself with worry. Then out of the blue an uncle and a 1st cousin contacted me with the news that they were willing to come forward. In the end my cousin, who has an incompatible blood type, donated her kidney to a stranger so that I could receive a live kidney when I was ready. I have never been so grateful and relieved in my life. So dont worry ...something will come up eventually once you get the word out there. People are better than youd think and there are always good ones out there willing to help.
Hi Wheezoids21....Thank you so very much for sharing your story and for your encouraging words. They truly help and are so appreciated. It is awesome that the donor came through. You are a miracle!!!! ***How are you doing with the kidney and did you adjust well to the meds? I am going to work on keeping a positive attitude through all this and believing God for a miracle. Nothing is too hard for God. ❤️🙏
Hi highgfr, my cousin donated her kidney in advance because she wanted to get it over with. With the voucher system you can do that if you know that you are not a match with the person you intended to donate to, or if you are concerned that you will be too old once the kidney is needed by that person etc. Even if you know the intended recipient wont need the kidney for another 20 years. I am given a voucher for a guaranteed donor once i am ready. I was approved for transplant earlier this year with a gfr of 20. It is now 15 and my dr thinks they will go ahead with the pre emptive transplant soon. Once she has decided i am ready, a kidney is found within 2-3 months, in advance of the need for dialysis. I expect it will be sometime this year and am excited to get it done and dusted. My next challenge is to keep a positive attitude that the operation will go well and that i will adjust well to my new regime. It's a lot to take on, but i am luckier than most in that i have a kidney waiting and that my ckd hasnt come on fast and furious.
Hello Highgfr, I'm sorry that you have to go through this. It can be a scary and rough road. My CKD was brought on suddenly by an autoimmune disease so I did not have time to think about dialysis. I was given a port during my hospital stay and used that for hemo for 3 months. After that, I had a PD catheter placed and did that for 6 more months. I was very fortunate that my kidneys recovered enough to come off dialysis and my creatinine has been stable in the low 2s for several years. BUT! I dread the thought of my kidneys deteriorating over time and me having to go on dialysis again. I have mentally toyed with the thought of not doing it but as you said, life is so precious and I want to spend as much time with my family as I can. I don't know if I would be able to do PD at home again again and I did not like going to the dialysis center so I would just have to suck it up and do what is needed to stay alive. Stay strong warrior!!!
I'm in your place. My brother tried but he has high blood pressure so they said no. There's no one else that could so I'm just waiting for a deceased donor. It's a race between when I might have to do dialysis and when I might get a transplant. I plan on doing home PD when dialysis becomes necessary. I'd rather not die.
There is a book about dialysis that I think is helpful— not sure if I am supposed to name it since there is no promotion allowed on this website, but the name is Help I Need Dialysis.
I donated to a friend I had known for many years, but with whom I have lost touch, and renewed acquaintance after we both retired . I think it is easier to find a friend who will donate than to solicit the public. So I would let your friend circles know as widely as you can that you are facing kidney failure and need a donor. Church networks are good— if you don’t have a church, try enlisting friends who do.
Finally, don’t panic now! My recipient went for years with a gfr of 12-13 before actually needing dialysis.
WOW....thank you so much for your response. We will find the book. Sounds like such a help. I will try my best to get it out there but it seems so strange to ask for such a personal thing. A KIDNEY. Others are encouraging and it seems to be a neccesary thing so I will do my best. It is such a blessing to hear from you and others on this site who are sharing info/stories and encouragement. WHAT a difference it makes. It is not taken for granted. Thank you for pointing out how long your recipient went with a gfr like mine. I pray our Mighty God will be gracious to give me that kind of time. I have one kidney and pray so hard for my gfr to go up just a few points to make it last even longer...so I can get a kidney. Between BP and diabetes it is so challenging. But with God ALL things are possible. So...like you said... no panic...no panic. It's got to be ok. Again...thank you so much and I hope you have a blessed and memorable Thanksgiving holiday. ❤️ You must have a mighty big heart, full of compassion, to have given such an amazing gift. God bless you always!
As Bassetmommer said, the NKF on their website have some great info and tips on "BIG ASK, BIG GIVE." asking for a living donor.
Before my transplant, I was looking for a living donor. I told everyone my story and need for a kidney - family, my church family, my work, friends... My pastor put an article in our weekly bulletin. I had a cousin that was a match, but with more testing they ruled him out due to high BP. My brother was ruled out too, because of high BP. 3 people from my church came forward but they were not a match. I had a friend that was going to be my living donor. She was going to have more comprehensive tests done, when I got a call from my transplant center that they had a kidney for me. So my donor was a deceased 16-year-old. His kidney was a 4/6 match. It was a fantastic transplant since I am now 23 years post transplant.
Share your story to everyone! I firmly believe that God and both of my parents in Heaven orchestrated this transplant! I also believe that this was successful because I am now a volunteer and public speaker with the WY Donor Alliance and NKF. So, even after my transplant, I continue to tell my story.
Best of luck to you! Be outspoken and tell everyone your story!!
Thank you SO much for your response. What an amazing story...thank you for sharing!! Since my husband did not pass the testing I have no other donor except for my granddaughter and since she is under 18, that is not an option, bless her heart. So I will try to get my story out there like you have said and wait on the Lord. 23 YEARS??? WOW. Praise the Lord. That is incredible. Congratulations. Thank you for being such an advocate and sharing your experience. It is so encouraging. It just seems so hard to ask others for an actual kidney. It's so personal. But, God knows best and I have got to trust HIM! He is always faithful. Again, thank you so much. Have a wonderful and blessed Thanksgiving and keep on encouraging others. ❤️🙏
I understand how thing can be scary I’m at 9.4 percent not on dialysis yet . But doc said
I’d probably in January need to put a pd catheter in. Have you thought about pd instead of hemo since you are so scarves of hemo? Some people find it a lot easier. To get your story out there do an email blast to all your contact . If you have Facebook or Instagram out your story on there. I have a web site my transplant center uses see if your transplant center has it. I can send you a link I can’t put it on here but I can private message you if you want it. If you go to church put it on your church Facebook .
I could have written exactly the same post 6 months ago. I was so bloody determined I was not going on dialysis. I was going to prove my consultant wrong and miraculously improve my kidney function. I was feeling fine even though my gfr was down to 9. Then one day I woke up and felt awful. Coincidentally it was the day I had to see my consultant. I finally surrendered and said..do what you have to do My husband unfortunately has issues with clotting, so he has been ruled out. I do not feel comfortable asking anyone else. I wont lie. Haemodialysis is a huge pain in the backside. I have no social life now. Im either at home work or hospital. However you just get in with it. You mourn for your previous life but you soon adapt to your new "normal". It is keeping you alive. Also you learn, that many patients are living with a lot worse ailments. At least we have hope of a better life, if we receive a kidney. I hope you don't have to go on dialysis. However if you do, its not the end of the world. You have came this far. You can do the last hurdle xx
WOW. Thank you so very much for your response. SO grateful. And you are so right...so many people have it much worse. I am trying to avoid hemo as well but do not. know what to look for to tell me when I am at that point. Will I feel sicker or flat out. I have no clue. How will I feel if my function drops lower? Thank you
How are you doing with dialysis and how long have you been on it? Did it hurt and do you handle the sessions pretty well? I have heard so many stories and that some do great while others truly suffer. Does it go well for you? It seems so confusing and scary. Praying you get a kidney quickly. 🙏
I was fine, just tired. I had covid back in March and as a result, my kidney function dropped to 9 . I still work and was working all my shifts. Looking back I actually think sheer bloody mindedness played a big part too 😳😳. Then as I say I woke up one morning exhausted. I felt shivery and feeling very down. I can only describe it as a toy whose batteries were about to go. I actually wanted to be attached to some sort of power supply 😳😳😳. It sounds daft but its the only way i can describe it. Believe me you will know!!!Dialysis is like everything else..one step forward two back..good days and bad days. You will feel a mixture of emotions etc. However it might not happen to you. Just concentrate on staying healthy and enjoying life. Appreciate the freedom you have just now. Take care and keep us updated x
Hi Ziggydoodah!! Thanks again for taking the time to share what you went through. It helps to have some kind of idea of what to expect and when to get help. Bless you. Praying you have only good days with dialysis. Yes, I do appreciate the freedom right now but I am trying to be so careful not to pick up anything that will make me sick/ill. I have stayed pretty well on the kidney diet but now and then I mess up and eat wrong. Still working on that. But, again, thank you so much and I will keep you updated. Please do the same. God bless you always!! xoxo
Are you on the list at Mayo in Minnesota? I'm on the list at HCMC. They told me 6 years wait. I'm very worried I won't make it. I got my fistula last summer, but have stayed high enough and haven't started hemo. I can't do pd. I don't have anyone to donate to me.
Thank you for your kind response. I'm so sorry to hear you are also on a list. I cannot do PD either because I am cut in the middle from side to side from when they had to remove kidney cancer many years ago. So it has to be hemo. I keep putting off my fistula but now it is staring me right in the face. I just hate it. I will begin praying for a kidney for you and pray you do well when it comes. All of it is challenging so we have to find a way to think positive about al this... somehow. God is able and He is with us so we have to trust Him to work it all out as things happen. That is the ony way I can face all of this. Without Him I am lost. Doctors and everyone are very nice but they cant do this for me. Hang in there and I promise to be praying for yours and my kidney donorsto pop up and be a match. God bless you !!❤️🙏
Thanks. Getting my fistula wasn't as hard as I thought. I had to get it in my upper arm because my veins are too tiny. They thought it was going to take two operations, but it didn't. It was just day surgery. You can do it.
That's great. Glad it went so well for you!! Lord willing a donor will be found before you need dialysis!! Continuing to pray!🙏
Your feelings are completely understandable. I am at ckd stage 4 with O positive blood. The donor wait lists for O positive are the longest. When my time comes I would prefer to get a transplant to prevent dialysis but the reality is that undergoing dialysis while waiting for a transplant that might never come is very likely. I am dreading dialysis but watched my father do hemodialysis for five years while waiting for his transplant and it seems less scary the more you are exposed to it I heard that Mayo is active regarding live donor exchange programs so that if a live donor isn’t a match for you, they can give it to someone else in exchange for you receiving a kidney from a different donor. Sometimes the donor exchange involves multiple donors. Maybe someone at Mayo can help you with seeking a donor. Like you, I have had thoughts about just doing palliative care and letting nature take its course, because dialysis and transplants all seem so exhausting and overwhelming. But I plan to try for home dialysis first before giving up. If you are approved at Mayo that’s a huge positive. Sending you strength!
Bless you for your encouraging words and for sharing with me. It helps more than I can express. It is our prayer that someone will step forward that will donate a kidney and it be a match in every way but until then it makes sense to try to get a handle on what may have to happen. I have met the denial phase of end stage renal disease head on and now need to get ahead of all these feelings about dialysis. Please God give me strength and peace. And you hang in there and may your gfr improve so you never need dialysis or a transplant. God bless you and thank you for being so supportive. ❤️
Hi Highgfr,
reading your post, I realized I could’ve written this! I feel exactly the same way! I feel like we’re on the game show let’s make a deal. We have door number one-dialysis. Door number two-a transplant, and door number three- let nature run its course and leave this earth. Ugh!! I don’t like any of these choices none the less I am forced to make a decision. I like to do a list of pros and cons to help me decide when I’m at a crossroad. Right away, door number three gets crossed off the list, although it’s the option that seems less scary and gives me complete control over my remaining days, life here is a precious gift and not being here for my kids, for my (hopefully)future grandkids, my husband etc and putting my family through grief is just not an option I can find peace with. Door number 2 transplant as a long term solution seems to win out over door number 1, dialysis but transplant isn’t always an option because I keep getting put on hold for various health issues that pop up. I understand that dialysis may feel like the consolation prize but really many people are not only existing on dialysis, but living a fairly full life once it is accepted and embraced as the life saving therapy that it is. And I also think about the fact that other doors are opening up. Mechanical kidneys that fit inside our bodies, genetically altered pig kidneys and better ways to prevent kidney rejection with less side effects. Another factor for me is that my condition is genetic, and one of my daughters has the gene so I have to lay the positive groundwork for what she must face someday. Like you, I do trust God, and lately, I had an epiphany that if I’m truly trusting Him, I have to start living a life that shows I trust Him. I have to silence that worried little “What if…?” Voice that’s inside my head and replace it with “Be still and know that I am God. Fear not for ALL IS WELL.” I repeat all is well like a mantra. God’s got this, if God is for me who can be against? Trust is really hard when everything around you seems to be against you. When you hit roadblock after roadblock it really tests your faith still, I have to remember like you said many miracles have happened in my life. I’ve been in tough places before, and God has always come through. I guess the very worst thing that could happen is I pass away from CKD or one of its treatments and I go to heaven and that’s not a bad thing after all. I don’t have control over any of that so I do what I can and give the rest to God.
Hi Jamok... thank you SO very much for your response. How gracious of you to be open and so encouraging. We have a lot in common and you said it all so well. The "what if's" are such a pain and do cloud my mind so many days. Letting go and letting GOD is the entirety of this whole situation. I just want to have a say in the matter but that is not always the case. Thank you so much for reminding me of the wonderful scripture: "Be Still and KNOW that I AM GOD". Yes...AMEN. I need to move out of the way and trust HIM wholeheartedly. I have to be tough, strong and of sound mind to handle whatever comes my way. We are not in these times alone and it's time to deal with this fear. Thank you sooooo much. It is exciting to hear about what may be possible in the near future. Sounds like you have a solid grip on all this and I will try to do the same. Thank you fo your example and input.....Bless you!! ❤️🙏
Hi guys...I never found out about my low GFR until I was at 50% GFR. No Doctor ever told me anything. Since then, I am below 10 GFR. I am a stickler about sticking to the regimen of what to eat and what not to eat. Low Potassium, Low Sodium, Fresh Salads, No fast foods, no Dairy, little sugar, Vegetarian and a lil Chicken now and then, Vitamin Therapy, Daily Stretching and exercise, Walking, Meditation, watching Comedy, seeing an Acupuncturist twice a month, Yoga and Tai Chi, lots of non Dairy yogurt and Fresh Fruit, Seeing a therapist once a month, Drinking Water, listening to Positive words like Louise Hay, Pets and Plants, Joe Dispenza guided Meditations, Deepak Chopra, Moooji, Donna Eden and Energy, Healing Scriptures, Helping others in need, Creative Projects, Karaoke, Dancing, Lay in the Sun, Reciting Mantras and Affirmations, but, my GFR says different. I take Medicines for Manic Depression. Could this be the cause? What am I missing? I feel like Why this? I don't drink of do drugs. I don't smoke. So what am I suppose to learn from this? Now the Doctor is saying " Dialysis" or later a Transplant. I can relate with the feeling of fear about it all. Prayer does help...I get big support from my mate who I am thankful for. Love is a great Healer...
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