What has your experience with the healthcare system been like?

[Vesa]

Happy Halloween to you all!

Today, our question is about how you and your child have experienced healthcare systems.

Is there generally a good understanding of childhood kidney disease and the symptoms impacting your child?

[melissamae_ia]

General doctor knew nothing...i did the research on her symptoms and brought it to his attention. The adult nephrologist didnt seem to know how to treat her. Once we got to a pediatric nephrologist, things seemed to get better. Doctors still dont think some symptoms are related even though I know they have to be because others with her condition say the same thing

[Alexsmom]

When the symptoms first started to appear (cola-colored urine), we took him to his primary care doctor who ran some tests and she looped in our son's nephrologist right away. At first, we were just hoping it was a urinary tract or kidney infection. After a month of more testing, ultrasounds and a kidney biopsy, we had our diagnosis (IGAN) and have been seeing the nephrologist pretty much on a monthly basis. She is very knowledgeable about the disease and has a plan of action on how to treat it, however when we bring some of his symptoms or side effects of either the disease itself or prednisone to her attention, she acts like it's unrelated, like so many others say. At some of our appointments, I pull up the blogs I'm on and share that others with this disease have the same side effects ... just so she's aware.

[JaMoMom]

We were diagnosed in the ER (we have a teaching hospital) so this is where where we found our Peds Neph. We definitely followed with the PCP but this was not her specialty. I feel we had good support from medical professionals all the way around

[ljackson]

Our healthcare is system has been amazing!! They care about the whole patient and not just the illness and they care about how the family is coping as well. They have recently built a children's building to house all of the pediatric specialties and departments that are needed to care for the children. We are able to have ultrasounds, xrays, lab work and infusions done in one building. Our doctors will come to us if we are having an infusion for our appointments. It makes the logistics of having multiple appointments and tests done so much easier. The staff is trained to be helpful, courteous, and empathetic to the needs of the patient and their families.

Our doctors are very knowledgeable and are very good to make sure we fully understand and answer any questions or concerns that we may have about his disease, care, and his treatment plan.

[sarahtar]

With the nephrology team, and among the other specialists who work with the nephrology team, yes. Outside of our transplant hospital, no. I've lost count of how many doctors - DOCTORS - have asked me if my son had both kidneys transplanted. Um.... no. "Oh, just the one? His other kidney works OK, then?" And...no. And I get it that not every doctor will know how kidney transplants work. But, come on. I knew that you only need one kidney and that transplants are only ever one kidney LONG before I had a baby who needed a kidney transplant. We've also had GI doctors who don't realize that renal failure in infants often impacts their appetite and ability to eat orally. Psychologists and developmental doctors who don't know that renal failure in infants has been associated with neurocognitive deficits. (Our nephrology team DID know this, but don't generally share that information with parents, which I think is a tragedy.) I don't think I've ever told a doctor that they can hit up Google for more info, but I've definitely thought it.

Immediately after his birth, the hospitalist and the pediatrician at the hospital where he was born (emergently, induced, because his renal failure resulted in no amniotic fluid) both insisted to us that since DS had peed after delivery that his kidneys must be fine. After all, you don't pee if your kidneys aren't working. They denied our repeated requests to notify the peds nephrologist (at a competing hospital). They insisted that prenatal ultrasounds performed by their own doctors must've been wrong and DS was perfectly fine. Once we were discharged, we saw the nephrologist and had a very sick baby in complete renal failure (as predicted) who needed to be rushed to the university hospital 2 hours away and started on dialysis. I, uh, still have some lingering resentment over the whole thing.

[Pinky4]

I am a little disappointed that this wasn’t caught sooner. A simple urine test could have shown our pediatrician that there was protein in the urine and she needed further testing. About 10 months before her diagnosis of Nephrotic Syndrome I called her prediatrician with my concern thinking that my daughter was just gaining weight. The doctor did lab work at my request but just checking cholesterol and triglycerides and her cholesterol was high. So the focus was on a weight issue. But I really think this was starting back then. After the diagnosis I have been pleased with our nephrologist he really does a good job at explaining things and from an academic perspective he is fabulous but from a bedside manner perspective he isn’t all that personable. I like his conservative approach and sometimes I feel things are moving too slow. We went to a nutritionist last week and that was a bit disappointing. She didn’t give me anymore or new information than what I already knew. I felt it was a waste of money. I love my daughters pediatrician and they have been so helpful through all of this and have called us to follow up and check in on how things are going. So overall, I guess it’s been just OK.

[3pigsny]

Initially, our pediatrician thought our daughter was having allergies. I brought her in for swollen eyes. He told me when they see swelling in the legs, arms, and groin area is when it becomes a concern. I came back in a few days remembering what he said and then doing a little research on my own. She was in full-blown edema at that point and that's when they referred me to the nephrologist for an emergency visit. I'm glad I was on top of it, because if I let if go any further it would have been even more serious. Thankfully, the doctors and care here in NY have been fantastic. Everyone has been so knowledgeable about this disease and how to treat it. The hospitals were wonderful, the nurses, and our new nephrologist. I did switch doctors, but this was just because it was for personal reasons.

[Bugslife]

Healthcare has been a nightmare. We have had to fight to get our sons catheters supply we went to our senator to get help because insurance wanted us to reuse our catheters. I feel insurance company dont have a full understanding about the disease and the urgency of some children needing their supplies. My son caths every 2 hours that is the only way he can go to the bathroom so if he doesn't get his supplies he would die. There needs to be more education and compassion about people with diseases. Sometimes I feel they dont care they get to go home at night and not to have to worry about a sick child.

[MCMom]

Our general doctor wanted to figure out what was going on with the swelling, but did all the wrong tests. I'm sure she would have figured it out eventually but I found it googling before she got the chance. We don't live near a pediatric nephrologist so we have to travel 2 hours to see his doctor. Our first doctor, while knowledgeable, didn't have the best bedside manner and english was her second language so we left with more questions than answers. We tried a new doctor and couldn't be happier with his willingness to walk us through everything, trying different medicines to keep him out of the hospital, and attentiveness. His nurse called to check on our progress daily and to adjust meds as needed until his swelling was down. He explained to us that they are still learning about this condition too and to bring him anything we have concerns or questions about and we can work on figuring it out.

[Samhan]

Pediatrician thought he had protein in his urine due to illness. When he consistently started showing proteinuria is when he decided to check blood pressures, which were higher than an adult and my son was only 4-5 months old. After seeing his nephrologist, things got better but we still didn't have answers. After several tests and finally a diagnosis, his disease is still very rare (only patient diagnosed with his kidney doctor) so answers are still very vague. Hopefully with more research and family history, we can get more answers.

[ShareYourSpare]

Our experience with doctors outside of pediatric nephrology and those who are part of the transplant center has been pretty poor! General doctors (pediatricians) have been anxious when taking on my son as a patient. We've seen a few pediatricians and it's frustrating how wishy-washy they are on treating him for anything and I'm talking about ear infections, pneumonia ... seemingly normal kid stuff! I totally understand that we always have to consider and protect his kidney, but to almost be afraid to make a move ... come on! I love our pediatric nephrologist (like family at this point!) and asked him the other day to please recommend a pediatrician who isn't afraid of kids with pre-existing conditions!

From the insurance standpoint, it was not easy in pre-transplant days, which was only 1.5 years for us, luckily. We had PPO as primary and Medicaid as secondary and most doctors didn't understand the Medicaid part of it. Lots of hours spent on phone calls to insurance to get one hand to talk to the other. At transplant, Medicare became primary for 3 years following transplant and then PPO became secondary and Medicaid dropped. Time to switch pediatrician offices b/c they don't take Medicare... and go to a general doc who sees all age groups and does take Medicare! Again ... SO many hours on the phone with Medicare. They covered SO MUCH and it was fantastic, but let me tell you ... I couldn't believe how many people answering phones at Medicare do not realize that a child can have coverage only by way of ESRD. They really need to educate their employees and I hope that has improved. We ended Medicare in 2016 since they consider the transplant a "success" after 3 years and they then drop you. Thankfully we have a good PPO as the primary insurance now. We have a dedicated contact at our insurance carrier who helps speed along approvals/pre-authorizations. Generally no hiccups once Medicaid and Medicare were out of the picture. I hated making insurance phone calls (and still do), but they covered almost every bill, so I won't complain for too long!

[NephMom]

We have had a positive experience with our healthcare team. Our pediatrician is very knowledgeable about nephrotic syndrome. We absolutely love our nephrologist. His office is wonderful about educating and returning phone calls promptly. They never make us feel like we are bothering them. We have great support from our physicians.

[Justaconcernedmom]

General Dr. do not know much about this disease. We find that if we see a Dr in our practice that didn't look at her chart before the visit, wouldn't understand why i was so interested in her protein levels and blood pressure. Even requesting many times that the nurse come in and repeat because I don't believe the got an accurate reading. Watch someone take BP enough times, and you can tell if they are actually performing the test correctly. insurance is the other big issue I have, its a lot of time calling and providing an exhaustion number of documents to get things approved, but such is healthcare.

[Lifealysis]

A nitemare, and a blessing. It really depends on the Hospital, Facility, Doctor, Agency, Organization... I have a thousand stories I could tell about the medical industry. The good, the bad, and the corrupt.

[Lifealysis]

The healthcare system can be a Nitemare! I could write a book on this topic. It's sad but true, our healthcare system is not what it should be. I think Nursing homes are probably the worst, and then some Dialysis centers are second to worst. Insurance companies don't want to pay for treatments, or medications Dialysis patients have to have, then Administrators are laying off employees because they aren't making enough money to keep them. Which then has a great stress on the patients, when there aren't enough staff working to care for, watch, and put patients on and take them off. When costs start getting cut at a Dialysis center, things can go downhill very quickly on a number of different levels, for patients, staff, and the unit as a whole! I urge anyone that might be reading this, to handle as much of your own care as possible! Learn as much as possible about your condition, and if you are able too, treat your own care! You will have a much better life, living this life on Dialysis!