Need Some Courage.....

[MatisseT]

Good day - I have very much appreciated reading everyone's postings over the past couple months - inspiring! May I ask advice? After evaluation for kidney transplant, my local hospital system indicates that I am not a good candidate for transplant due to peripheral arterial disease (PAD). I am so confused - I have been visiting this same hospital for the last 3 years for the PAD issue; my last appt. in July was that all was steady, no deterioration and to come back in a year. Now I'm told it's too bad for a transplant but that I should visit University of Wisconsin or Mayo for a second opinion about transplant. I am not sure what to do. I am low Stage 4 and my kidneys have been declining since I was a child..... and - 60 years later, still no answers as to why.....I am just reeling today....Thank you so much...

[SN23]

Hi MatisseT,

Can feel your pain. This is so frustrating. While you decide on the next steps, I would recommend you check out this amazing group called Natural Kidney Journey that has shown the light to so many people. Their protocol is basically Whole Foods plant based diet that you eat to your labs. And yes it is possible to improve as is borne out by lab postings of real people in the group that has over six thousand members.

My very best wishes. Remember you are not alone. You have everyone’s support here🙏🌺

[MatisseT in reply to SN23]

Dear SN23, Thank you so much for your good encouragement. I engaged with Natural Kidney Journey a couple of months ago and appreciate the good direction. Most part, my diet is plant based - and it's been easy over the summertime in Wisconsin with a prolific vegetable garden and Farmer's Markets. I do love introducing my family to plant based meals that, surprising to me, they find delicious It will be a little more challenging over the winter to find such good, fresh food. I need to hold on to hope and positive action....

[MarBea]

Hello Matisse,

I read your post, and my heart goes out to you.

I am newly diagnosed, and navigating, and I don't know much about transplants.

I do understand reeling.

As hard as it is, take some deep breaths, being stressed is a normal reaction.

Try to not let being stressed add to the physical challenges you are facing.

Channel your energy into finding answers and options.

Get those second opinions, and please keep us posted.

Sending you a virtual hug, and positive energy.

[MatisseT in reply to MarBea]

Dear MarBea, Thank you so much for your help to calm down. Stress is a big battle for me, and I know that it does not help my health situation. You are right - to direct energy where it can help me rather than the negative thoughts and feelings. Mostly, I just felt very abandoned by the health system. I know that feeling is not right and try to overcome it....Calls went out for the second opinions yesterday and waiting for return calls.....Hug back to you, MarBea. I wish you the best as you move forward with your new diagnosis....it is challenging but there is always hope.....

[rabbit01]

Hello my kidneys just failed without high BP or anything else that the doctors could find. I was 48 years old and diagnosed at stage 4 with 17% left. I suspect like you my kidneys had been failing all of my life and that would certainly account for how I seemed to get more tired that all of my peers.

Five years on from that devastating diagnosis I am just starting dialysis. Next Monday is my first session. You have not said what your diet is like. What I will say is that following a renal friendly diet is really important to slow down progression. Doctors just seem to dismiss it and one even told me just to eat normally when I was diagnosed. However I made a number of changes to my lifestyle and I believe that this certainly helped slow it down. I think if I knew then what I know now then I could have kept going for another couple of years. As another person said there is a facebook group called the Natural Kidney Journey and I followed their diet for a while and was amazed to see my potassium and phosphate and indeed urea all return to nearly normal levels. My doctors could not explain it although to be honest they were not that interested in any level aside from creatinine.

Despite what I ate or didn't eat I could not lower creatinine whatever I did and was nearly at 7% kidney function so I decided it was wise to go on dialysis. I hope you can delay it for many years through diet improvements. Obviously before making big diet changes you need to consult your doctor as there may be other things that exclude you from following a whole food plant based diet. Also make sure you get a good doctor. My nephrologist was hopeless and never offered me a single thing to slow it down so again with the right medical team onboard I thing that would really help you get the most out of your kidneys, Good luck,

[Oldearkie_83]

My best advise is for you to use the advise you have been given: get a second opinion from your medical provider. My kidneys have been failing since I was born: I have Autosomal Dominant Polycystic kidney Disease (ADPKD). I picked the wrong parents, but 83 years later, I'm still with it and NOT on dialysis, but I"m getting closer with a 23% kidney function. Is that what you have? What is your GFR and your urine pH?

[MatisseT in reply to Oldearkie_83]

Dear Oldearkie_83, You are an inspiration, and I have followed your posts along the last few months. You always have good attitude I made my calls yesterday to seek second opinions and waiting for return calls. My kidney function is between 15-18 as of late, not sure if I have ever seen a pH - will have to inquire. Mostly, I worry for my family that I can care for them yet care for myself. It seems a lot sometimes. But I hope....

[MatisseT]

Dear Rabbit01, I feel for you and wish you the very best as you start dialysis. I know it will go well for you; you are young and strong and it's amazing how you have been able to sustain with the right diet. It is challenging to find the right doctors - sometimes, in a big health system, I just feel like a number.... gotta keep trying to find the right team to help....The hard part is doing everything right but unable to right the ship despite that effort....Nontheless, continue to hope and pray. I will be thinking about you....

[Jayhawker]

Please do exhaust all avenues for transplant eligibility testing. You will want to give yourself every chance possible.

I’m currently undergoing transplant eligibility testing as well. It does add additional stress. I keep telling myself to look at it as a good thing as it will identify anything I’ve got going on medically. I am also trying to manage my expectations; that’s easier said than done🐶

The bottom line? I’ll need to deal with whatever the transplant team has to tell me as well.

I am prepared to start dialysis. I’ll start with PD dialysis. I grew up with a father who had CKD. He managed it very effectively but was ultimately placed on in home hemodialysis. I was one of his care providers. That was close to 35 years ago.

Nevertheless, I watched him navigate all of this very effectively. I often say that my dad taught me how to live well with a serious chronic medical condition. I know he would be telling me that PD dialysis will be a good situation; I’ll feel well and function well while on PD. He’d also tell me to do what my medical team says, ie, work with them. But then to get on with my life—not let dialysis take my life over.

What an incredible gift to give your children—teaching them how to live well with a serious chronic medical condition.

You’ve got your action plan. Definitely let us know how it goes. And, in the meantime, try to enjoy life on a daily basis.

Jayhawker

[MatisseT in reply to Jayhawker]

Dear Jayhawker, I so appreciate your sharing about your dear father and what a good model he was for managing chronic illness. It is so clear how much you loved him. Such good advice that illness cannot dominate one's life - to keep all in perspective and faith in the grand scheme. I want to wish you the best with your current evaluation and hope all goes well for you. Thank you for giving me courage....

[Dustypye]

Hello,

I'm not familiar with PAD, but, I had a bump or two on my road to a transplant. The original hospital I was using had approved me for the transplant list, but, they were cold and uncaring, so, I went to a different hospital across the state. They told me I had to lose three inches off my waste or something like that. I unloaded on them and got myself on that list within a few weeks of being denied. I say go to another hospital and be your own advocate. I know it's difficult when you feel awful all the time, but, I've found that some hospitals only care about their numbers while others care about their patients. This is your life and when it's all said and done, you're going to be the one that saves it. I know there were times when my hospital just hated my guts, but, I was never afraid to file a complaint or go over anyone's head. And, here I sit just a few months away from the two year anniversary of my transplant. Also, this online community helped me so very much. And, don't forget that there are therapists out there that specialize in helping people with chronic illnesses. I saw a therapist leading up to my transplant and it helped a lot.

Dustin

[MatisseT]

Dear Dustypye, Thank you so much for your good reply. You have given me further strength to be my own advocate and to fight through the obstacles along the way. I am so glad that your transplant happened and has been successful. Appreciate greatly.....