Communication with nephrologist

When my husband has a question for his nephrologist , he has to contact the nurse at the PD clinic, she relays the question/ issue to the nephrologist. The nurse then calls my husband back . He is not able to call the nephrologist at his office or speak to him directly because he is a PD patient. Once a month he has a meeting or zoom call to discuss the blood test results. My husband experienced back pain for 18 months, lower back pain, middle back, shoulder, and kidney area
. The nephrologist told him this was not kidney ralated The pain started about 5 months after he started dialysis. He recently found an article about end stage kidney disease and back pain . He forwarded it to the nurse, requested she forward it to the nephrologist. The nurse responded via test stating she didn’t see how the article related to kidney disease. We have not had a response from the nephrologist yesterday. It has been 5 days.
His primary doctor read the article and based on the information prescribed a medication that has provide relief. It is not an opiate

I’m glad that your husband’s primary care doctor prescribed a drug that has helped with his pain. However, if your husband hasn’t had an x-ray or a scan to assess the cause of his pain, I’d suggest asking his primary physician if s/he would consider ordering this. I noticed that you posted in December 2020 that he was having excruciating back pain. Pain may be caused by many different things other than dialysis. Some causes of pain may just require pain meds, but other causes of pain may require different types of treatment.

If you and your husband do not feel well served by his dialysis clinic, PD nurse, and nephrologist, there may be other nephrologists and clinics that offer PD in your area. I’ve known patients to switch clinics for less. You might want to check out the Find a clinic database on Home Dialysis Central at Clinic Search - Find a Clinic - Home Dialysis Central.

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thank you
My husband has had e-rays, scans and MRIs of his back, gallbladder, stomach, veins, everything. So far no problem was diagnosed. he was accepted d to Tampa as a kidney recipient so we are hopeful.The medication haas changed in life in 2 days, Garbpentin. He feels great. We have changed nephrologists. I wondered if they all operate with this only talk to the nurse system or is it just Florida? We actually are quite pleased with the nurse. I just feel with such a serious disease, to would be good to have the dr. talk to my husband directly

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I agree that it’s best when the patient can talk directly to the doctor rather than having to go through an intermediary who may not ask the question exactly the way he would have asked it and might not provide the answer exactly as the doctor stated it. I remember the old “telephone game.” I would hope that all FL clinics and doctors do not operate that way, I have a friend who was taking Gabapentin for nerve pain, and it helped a lot. Did they look at where the tip of his PD catheter was? Might it be pressing on a nerve?

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Our experience has been with DaVida and Fresenius. They both operate with a nurse as a go between
We have not had a good experienceI. One nephrologist thought he was making up the pain
He had to stop fishing, bike. Riding and going for long walks. He tried to walk a bit a few times a day

Yes the catheter was checked
He has just experienced a few days without pain in over a year
Ganapentinhas been miraculous
He will continue with Tampa and Cleveland Clinic to find the cause, but now he can relax, walk, sleep, energy did some stretching today

I appreciate you time and response

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I would say 1st, I’m sorry you feel dismissed by the team. Your husbands complaints should be acknowledged. 2nd, PD back pain is typically related to the UF of the dialysis (how much he removes each exchange). If he puts in 2500 and removes 3700, that can cause stretching and back pain. How much is he filling? How much does he remove? Does the urinate still? How long has he been on PD?

Thank you

His pain is not during the dialysis process and his numbers have been consistently good. He is now on Gabapentin and it has made huge difference. He feels much better, has been able to go for longer walks, sleep and just overall feels much better

My father is with Fresenius as well. He is on home hemo and I am his care partner. I know what you mean about the environment being one in which the nurse is utilized as a “go-between”. I think that’s just sort of the culture. But I do not believe that this is a hard & fast rule set in stone. You should have open access to your Husband’s Nephrologist at all times when he is available. As I read and understand. It seems your Husband really has been tolerating this pain for far longer than has been necessary. And personally, if a nurse were to review medical literature that I had provided and he or she replied with “I don’t see how this has anything to do with…blah, blah, blah” I’d be more than slightly offended as you’re obviously not there to waste his or her time and he or she seems to think that writing off your concerns as irrelevant is a perfectly acceptable behavior. Well, it is not acceptable. My dad has been dialyzing since the last week of 2014 by every available method. Over the years since, he has been diagnosed with cardiac disease for which he had double valve replacement surgery, cirrhosis (NASH) due to iron overload (clinic not properly maintaining his ferritin levels) as they administer iron at every opportunity when his anemia shows up which is inevitable each lab draw, he has had a pace maker due to heart block and avascular necrosis for which he had a full left hip replacement. He also has experienced neurological issues throughout his legs. Then there’s the spleen, prostate and gallbladder concerns but I think my point gas been made… Aside from ESRD, my dad had no other issues. My point is that over time, dialysis patients deteriorate. That’s just how it is. Dialysis is great for extending life but in all reality, the dialysis machine has never and will never work with the same perfect efficiency as those of us whose kidneys operate 24/7. It would be great of medical science were to progress to that point but I doubt that this is a realistic goal.

It’s important that your Husband’s nurse validate his health reports and simply follow through with passing your literature on to his nephrologust. It is not the nurse’s decision to qualify or not qualify anything. Most assuredly, the nurse is not professionally qualified to make a qualification. He or she does not hold the appropriate credentials to make any medical judgment. As you can see from my father’s experience, because of the kidney patients body, which will deteriorate over time, it’s imperative that any complaint of pain be addressed because as evidenced here, any number of things could be going wrong. It may be the most unexpected of all things. And I’m not saying this will be your experience. I don’t think that it is for all dialysis patients. But once the body does what it can, dialysis does its part, over time, out of balance electrolytes, potassium, calcium and all the rest does take their toll. Much better to get an early start than to discover anything really bad in the future.

I would take the express lane right around the nurse and be knocking on the nephroligist’s office door. And if he or she feels threatened or isms offended by you doing this I might suggest that the nurse is on some power trip or has an unhealthy need to contr others. And that’s not healthy. Healthcare unfortunately over the past two years has been anything but transparent in so many ways but never a better time than the present to remind those in Healthcare that transparency is an absolutely mandatory expectation and that you will accept no less. The days of dancing nurses in empty hospital wards is over and it’s high time they make a return to their original callings to be nurses and to do so with the same drive that they did when they entered the field.

Those are my 2 cents worth…I hope you’re able to resolve your Husband’s situation.

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Thank you for all the information and verification of all of our concerns. My husband sent the literature to his primary dr. He prescribed Gabapentin , which has made a miraculous difference. He has been able to enjoy himself, walk and swim. He is on the Tampa waiting list for a transplant and can now be active until a transplant becomes available.
Your 2 cents was priceless to me.

I wish the best for your father and you

I can relate to The Nurse’s being the go between,at DaVita Dialysis they have been really not doing thier jobs, They got my Son’s Diagnosis Totally wrong and it has put my son 3 months out of not being able to be put on the transplant waiting list. I did everything in My power to correct them but no Results They are responsible for my son not getting in to the Transplant Center’ we just got a Referral 2 days ago.We are really Disappointed and Angry :rage::rage: They can’t hit the fistula access hook-up in his arm for Hemodialysis in center ,they hurt :face_with_head_bandage: My Son’s Arm and bruise him I wanted to Become a Tornado :tornado::tornado: in that Center So I researched how to File a Greavice Complaint AGAINST them. So MUCH more I could say but just talking about it My heart races :laughing: LOL BUT BE SAFE DONT TAKE NOTHING FROM ANYONE WHEN YOU KNOW WHAT’S RIGHT AND GOING ON WITH OUR FAMILY AND LOVED ONE’S.
GOD BLESS YOU AND YOUR FAMILY :pray::pray:

I can feel the frustration in your message. I don’t know the facts of the situation, but your clinic should have a poster that says how to file a grievance internally and through the ESRD Network and State Survey Agency.

Many patients don’t know this, but most transplant programs are happy to see patients who self-refer for education and transplant evaluation. If your son is on dialysis, even if it took a while for him to get a transplant workup, the waiting time clock starts counting from when he started dialysis. If he has anyone who is willing to be evaluated as a possible living kidney donor, that’s the fastest way to get a kidney transplant and living donor transplants usually last longer than deceased donor transplants from the national waiting list.

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Thank you for your Response I appreciate you taking the time out to write me.
I had done The research and found the information to File Greavice.
Thanks :pray:
My Son’ wants to do in Home PD Dialysis. I have lots of Concerns about Supplies , Storage Area like how big of a room and how big is the
Dialysis Machine and how do I fit it all in his Room and wondering about all the set ups.
.Still have questions about his medical Coverage and I am up for any advice and others experiences . Advice and experiences Kidney Transplant and
just would like to be apart of the community here. Does anyone know about the
Kidney Transplant Process?
I’m Researching all the time ,educating myself as much as possible .
I do feel like My Husband and I are Going through This alone.We are the only ones Supporting him and Being his Addvocates and his Voice Please is there Anyone else Going through something similar? Open to talk.

Another option for kidney Transplant is The Paired Kidney Exchange Program.
Researched and I have to share with other’s.
It’s for those who don’t have same blood match.
Please share with others some people don’t know of that option. Thanks :pray:My Son’ wants to do in Home PD Dialysis. I have lots of Concerns about Supplies , Storage Area like how big of a room and how big is the
Dialysis Machine and how do I fit it all in his Room and wondering about all the set ups.
.Still have questions about his medical Coverage and I am up for any advice and others experiences . Advice and experiences Kidney Transplant and
just would like to be apart of the community here. Does anyone know about the
Kidney Transplant Process?
I’m Researching all the time ,educating myself as much as possible .
I do feel like My Husband and I are Going through This alone.We are the only ones Supporting him and Being his Addvocates and his Voice Please is there Anyone else Going through something similar? Open to talk.

Another option for kidney Transplant is The Paired Kidney Exchange Program.
Researched and I have to share with other’s.
It’s for those who don’t have same blood match.
Please share with others some people don’t know of that option. Thanks :pray:

Peritoneal dialysis can be done two different ways – manual exchanges during the day and overnight exchanges using a PD cycler. The cyclers are relatively small. You can see a picture of the PD machines on the Home Dialysis Central site.

A new PD machine was just approved by the FDA this week. It’s made by Fresenius and is called the Versi. It is the smallest machine weighing just 12 lbs.

The supplies for manual exchanges and for the cycler will fit in a closet or along a wall. If space is limited, you could ask the dialysis clinic if deliveries can be made more often than monthly.

If you haven’t visited Kidney School, there are 18 education modules on different topics related to kidney disease, kidney failure, and treatment for it.

There are a number of support resources online and by phone. Here’s a list on the Life Options website, which is also administered by Medical Education Institute that administers this forum, Home Dialysis Central, and Kidney School.

Transplant living has a lot of information about the transplant process, including living donation. Paired exchange and donor chains are ways that people can get a living donor transplant when they don’t have a donor whose blood and tissue typing doesn’t match theirs. This site discusses the types of living donation.

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Wow :astonished: Thank you so much,I’m Going through it now I appreciate it a lot.:pray::innocent::grinning:

Hi I am HTRN,. Trainer. The alarm 38 is a pain in the but,. My hanging bag frangible was Don’t complete severed and my waste line was to high,. Moved to the tub,. There is a kink somewhere,. I hate when I get the alarm 38., check all your lines are open,. No kinks

try something new like self loving lifestyle.