Hi, I'm Katherine

[Rainsbury]

I've been kicking around this site for several years now. I was first diagnosed with chronic kidney disease, about 5 years ago. The docs assume it was from longtime lithium use, although I haven't taken that medication for a decade. I'm 55, single and have little family support. Since being diagnosed I've felt my health could plummet any day. Its been stressful, but I've been hanging in there. I think that doing my best to adhere to a ckd-friendly diet has helped. For so long I stopped working and making plans, assuming Doomsday was around the corner. I've since adopted a more hopeful attitude and have started working full-time again.
My nephrologist referred me for an evaluation, but because I suffered a serious bout of depression, and smoked pot for fibromyalgia, I was denied evaluation by the transplant team. I've seen a counselor, and have stopped the use of marijuana, but I'm not sure I'll have another opportunity for an evaluation. I feel alone and afraid, but the more I learn from people actually doing dialysis, the less barbaric it seems, and the more courageous I feel.

[cassandra]

Welcome to the site Katherine

   


Keep taking good care of yourself, Cas

[kickingandscreaming]

Welcome, Katherine.  I recognize all the feelings you mention.  I've been on PD for about a year and a half now.  I wish you a long road before you have to begin.

[Jean]

Hi Katherine:
I have been hanging around waiting to get to the ugly low percenters for 10 years now. I wish you the same and then some. Welcome to the site.   

[Charlie B53]

Hi Katherine,  Welcome to IHD!

I'm 4 years in already.  I like to think I am very fortunate that I started Dialysis as early as I did, long before I began to feel kidney 'sick'.  I started early to reduce the swelling and infections in my legs that kept trying to kill me.  It didn't slow the degeneration of my kidneys, just kept me from the usual sickness associated with kidney failure.

Needle-phobic I elected the PD route.  I was fine for 3 1/2 years until I must have become a little to quick making my connections and touched a fitting, causing a terrible infection that eventually forced my switching to Hemo.  Still, dialysis is working very well as long as I watch my diet and fluid intake.

Study everything, it sure helps to understand the what's and why's of treatment.

You should continue to do well.

Ask your Neph about having that TX Eval again.  Nothing much will happen unless you keep pushing for it.

Praying for your continued best.

Take Care,

Charlie B53






sp mod Cas

[Michelle2016]

Hi, Katherine:

I was 30' when I found out I have chronic kidney disease. I was panic and depressed because there was not much information out there. I'm almost 60' now. I'm still working full time, do exercises as much as I can.

Recently I picked up some books of depression treatment for helping my younger sister. Instead, It helped me a lot. My sleeping is getting much better. The key of curing depression is stoping rumination. Most of our rumination, anxiety and worries are based on non-facts.

I find out that 30% of ER patients who have mental health problems such as ETOH, drug, depression and anxiety from all ages. They couldn't have normal life or hold jobs due to mental issues. Physically, they are healthy. That's why I realize the mental health is very important.

Take care.

[Rainsbury]

Hi Michelle, thanks for your note. Exercise helps. I should make it a point to do more. I'm sure you are right about ruminating about things. Its hard not to do.

[Rainsbury]

...I'm not sure how to navigate this site yet, but want to thank you all for your welcome and support. Cas, Charlie, Jean, kickingandscreaming and Michelle - I'm encouraged. Thanks!
 

[iolaire]

Welcome I'm glad you found the site and decided it was worth joining.

My nephrologist referred me for an evaluation, but because I suffered a serious bout of depression, and smoked pot for fibromyalgia, I was denied evaluation by the transplant team. I've seen a counselor, and have stopped the use of marijuana, but I'm not sure I'll have another opportunity for an evaluation.

Ask your Neph about having that TX Eval again.  Nothing much will happen unless you keep pushing for it.

We see a few people with marijuana versus transplant concerns.  I have to believe that you will see more acceptance of the use in the future (years down the line) and strategies to minimize the concerns related to transplant.  The transplants centers have to be rushing to come up with standards and guidelines on transplants and marijuana as we are seeing huge increases in the legal use and the methods of consumption. I'm sure smart people at transplant centers in CA, WA and CO, plus the numerous other medical marijuana states are thinking about the risks and how they can help their patients minimize the risks.  We see people on this forum promoting oils and other non smoked treatments.  I would have to hope some of those methods do not pose a risk to transplants.

[Charlie B53]

For supposedly being one of the smartest Countries on this planet we can still be pretty stupid.

[smartcookie]

Hi, Katherine!     I am so sorry you are going through this, but I hope we can help you and offer insight into the journey!  You can always be referred to multiple hospitals for transplant, so please don't think you have lost your shot at one.  I would have your counselor write a letter to go with your transplant referral to show that you have done that work.  Add a list of the medications you take for depression (if you take any) and let them know you are stable.  I have a couple patients who suffer from mental illness and that is what I have done for them.  It makes a huge difference.  I would continue to see a counselor or psychologist biweekly to show that you are committed to the process and have someone to lean on while going through the transplant process.  Please don't give up hope on transplants!  Transplant is a wonderful treatment option and would hate for you to miss out!

[Rainsbury]

Thanks all, for your comments. My counselor wrote a letter to the TX team, and I've submitted to urine tests in the last 6 months affirming that I've stopped smoking marijuana.

As I hesitated to take prescription meds for fibromyalgia flare-ups because of ckd, pot was truly a lifesaver. Other than being federally prohibited, I've never gotten any clear reason as to why its contraindicated. I do understand the concern when I think about how complicated doing peritoneal dialysis will be, and I certainly don't need to be making any clumsy mistakes. I've had a painful fibromyalgia flare-up lately and was prescribed flexoril. It was hard for me to take it, as marijuana is natural and much more effective as a muscle relaxer and pain reliever, but I will not let marijuana use interfere with my treatment options. It is legal here in Oregon. I feel I may somehow now be 'blacklisted'.

If I applied to another transplant hospital (I live in Oregon - there s OHSU and Good Samaritan Hospital), I'm assuming the answer would be the same as it would be my nephrologist referring me both places, right?

I don't have insurance through my new job yet, and have been on Medicaid. I'm wondering how much that fact influenced my ability to be evaluated, too.

Just not sure how confident I am in my nephrologist, but am afraid to ask him pointed questions and alienate myself further, as I may not have another choice of doctors. Seeing him for an 8 minute office visit every three months seems so dismissive.

[iolaire]

Other than being federally prohibited, I've never gotten any clear reason as to why its contraindicated.

Just not sure how confident I am in my nephrologist, but am afraid to ask him pointed questions and alienate myself further, as I may not have another choice of doctors. Seeing him for an 8 minute office visit every three months seems so dismissive.

This article has some background on the concerns.
http://www.cnn.com/2017/03/31/health/medical-marijuana-organ-transplants-explainer/

Re trusting your nephrologist - it might be worth it now well you sort of have a bit of time to shop around and see if you can find another nephrologist  that you do trust.  One thing you will find once you go onto dialysis is each nephrologist practice has specific dialysis centers that they work in, so you might consider shopping for nephrologists based on the dialysis center you want to be placed in once you start dialysis (i.e. the most conveniently located or one you trust) and speak to the social worker at that center to figure out which nephrologists work there and maybe get some insights on them.  For example in my center we have two doctors that work my sift, a partner of my old nephrologist who I trusted and I do trust this guy a bit, and then a Spanish speaking doctor from another practice - obviously if I was a Spanish speaker I'd prefer the other doctor.

[smartcookie]

Medicaid is great for transplant, because the team knows you can get your transplant medicines at an affordable rate.  I know here in SC, our nephrologist has nothing to do with transplant teams evaluation, except for the referral part.  He does mark whether he thinks the patient is an excellent, good or marginal candidate. 

[Simon Dog]

Seeing him for an 8 minute office visit every three months seems so dismissive.

CMS requires one in-person MD visit every month for dialysis patients (and this standard is generally applied to private insurance patients as well).    Something is amiss if you are being seen once every three months.

Neph quality varies greatly.  When I slipped on the ice, I emailed my Neph and he was on the phone to me (10PMish) within 5 minutes arranging for an X-Ray and saving me an ER visit.

[Tora66]

Hi Katherine, stay positive. 

[MooseMom]

Hi Katherine!  I remember you from your last spell here at IHD.  I hope that returning to the site will give you some renewed hope.  Welcome back!

[Rainsbury]

Thanks, Moosemom. Our earlier communications have helped me to emotionally navigate the prospect of dialysis. I've really appreciated what you told me. Thanks again for your support!

[SuperHuman]

You are still here Katherine! So that gives you plenty of opportunity to take control of your health! Dialysis and the treatments, are never Doomsday! You might end up at a bad facility, that makes it feel this way,.. but there's always another one around you can transfer too if that's the case. Depression is hard, I deal with it too despite all my strengths, but without drugs, or medications. It's not an easy task. You do feel alone, and sometimes life doesn't feel like it's worth living because of all this. But if you still have things you love to do on this Earth, passions and just enjoyments here...then life is still worth living! We can be alone, but we really don't have to be alone, sometimes we choose to be alone, it just feels safer that way. There are good people out there, you just have to explore them. I'm happy to hear you are off the marijuana. No matter what anyone foolishly tells you, it's no better than smoking and it has the same cancer causing carcinogens.
That's a huge positive step in the right direction! You should have no problem getting another evaluation one day, as they see you are focusing in the right direction! Keep up the great work! Everyone can get depressed, it's not a Disease, it's a normal human emotion,..sometimes drugs, medications, bad foods, or lack of certain foods will keep you depressed! Learn as much as you can, and keep on the good fight!

[Quimby]

Hello Katherine,

I have done research. Long after lithium is stopped you can end up with kidney failure. Statistically, among patients who took lithium over 10 years, even if they stop, 1/3 get kidney failure. This drug should be taken off the market.

I am wondering why you were refused the eval for the transplant. I hear discrimination plays a part, though I am not saying that's part of it. If they know you have a mental illness history I bet they might refuse you, since bigotry against people with such diagnoses runs very high around the world. That happened to a friend of a friend. She is no longer with us.

[tigtink]

So sorry to hear you are going through all of this. I am in a similar situation: I took lithium for 22 years, and even though I stopped taking it 18 years ago I still progressed to stage 4. From my research, the chances of progressing to end-stage from lithium use are less than 5% UNLESS you were on it for more than 10 years or had at least one acute overdose. If you took it during the 70's or early 80's your risk is even higher because they gave higher dosages than are allowed these days. The good news is it tends to be a slow progressing form of kidney disease and there is much you can do to delay dialysis. I have sought good medical help and with some luck and hard work have managed to stay off dialysis after spending 9 years in stage 4. I have accumulated 5 1/2 years on the list and hope for a preemptive transplant in the next year or so. I prepared by getting a fistula 6 years ago and it is still going strong.

I was glad you see you mention exercise. By far, the one thing that has helped me ward off dialysis is exercise. I joined the YMCA 5 years ago, became a regular at water aerobics class, and worked with a personal trainer to learn exercises that are more aerobic to add to my water workouts. I try to go five or six days a week as much as possible. The pool is best for me because I have arthritis in my feet and knees. I have met some wonderful people, most with their own health issues. They have become an indispensable support system (I don't dare miss a class without letting someone know why!) and a part of my social life. We go to lunch together every Friday. Sure beats sitting in a dialysis chair three or four days a week.

It is critical to have support from a good nephrologist and develop a good team of doctors available to address any medical issues that arise. Controlling blood pressure, taking ACE inhibitors or ARBs to reduce protein in the urine, and minimizing potassium and phosphorus in your diet are also keys to preserving kidney function and forestalling dialysis. One of my big issues was anemia. It made exercise so much harder. They were only testing my hemoglobin every three months and I had a hard time managing the Procrit until I insisted on monthly blood tests. The added advantage of monthly testing for me is reducing my anxiety levels and helping me adjust my diet. Sticking to a renal diet and minimizing protein intake are also important, but I struggle with keeping my weight down, so I do a bit more protein and limit carbs. I try to stay away from red meat and pork. I adjust my daily protein based on my BUN level. I suffered from low CO2 level for a long time, leading to metabolic acidosis until I got those levels up with sodium bicarbonate. My nephrologist recommends I maintain my CO2 around 28. As you can see, there are many things you can do to prolong staying off dialysis if you are proactive and get good medical care.

As for the transplant prospects, never apply to only one center! I have worked with three transplant centers over the years and they each have dramatically different requirements for making the list. Some will even add you to the list and keep you on hold while you address outstanding issues. You will accrue time while you work on things. If you have a psychiatrist, get him or her to write a letter of clearance to the transplant center--it will carry more weight than a letter from a counselor. If you are not currently seeing a psychiatrist, find a good one, go every three months for a year to establish good compliance, and try again with the transplant centers. Having a psychiatrist willing to advocate for you will go a long way with the coordinators. Persistence pays with the transplant process. Show them you are willing to work hard at staying  healthy and your chances of getting a preemptive transplant will go up significantly, even without a living donor.

One more thing that is so important: if you make on the list, make sure you understand the ongoing testing requirements and be proactive about making the appointments for testing. Be proactive about making sure the results actually make it to the transplant coordinators. Somehow, they routinely get lost in cyberspace between the various doctor offices and the coordinators desks. Make your coordinator's job as easy as possible and always keep them updated.

Sorry to throw so much information and advice at you all at once, but I learned so many of these things the hard way.  Hopefully sharing my experiences will help you avoid some of the same pitfalls. Keep reading and posting here. It really helps and you will learn a lot while helping others at the same time.  Good luck and we will all be rooting for you to stay off of dialysis long enough to get a transplant!