Things We Learned About Kidney Failure & Dialysis

Regarding blogging, one of the most common questions my friends ask me ~ “How can you publicly share so much about yourself?”

It wasn’t easy at first. I’d created a few blogs many years ago, but they were always accessible to only those in my inner circle for “informational purposes” only. They read my posts to keep updated on my home situation. I lived abroad at the time and the only way I could keep in touch with my family and friends back home was via social media or Skype. The problem with keeping a blog private is the lack of feedback that comes with being part of the blogosphere. I would gradually stop posting regularly out of boredom.

When a dear friend and I created Café Sanctuary, I knew the blog had to be different…and I also knew what that entailed. Writing for a blog to help people in abusive situations means gaining the trust of the readership. I had a story to tell and I decided that I was going to be open about my experiences because I had to show potential clients that I understood what they were going through. Helping people is more important than keeping my story private; it helps no one if I don’t tell it openly and honestly. After everything settled down, we started with the launch of Fleur de Cee and we mutually decided that this blog was going to be about the continued tradition of helping people. Café Sanctuary helps people who experience abuse; Designing Life helps those who need the guidance of a Life Coach when they’re looking for a fresh start.

When Chris and I reconnected 10 months ago, he’d changed over the years as a result of his experiences, past relationships, and health issues. As we talked more about what happened, he told me that he didn’t like broadcasting the details across social media and I respected that. We then spent several months dealing with his health issues and I have to say how much I admire him in so many aspects. He is a positive person who doesn’t allow anything to get him down, but he is also extremely proactive when it comes to his care. He has been through so much since he came back home and, amazingly, he has a smile on his face every day.

After much discussion, Chris agreed to share the details of his health issues and the challenges we’ve dealt with in the past 10 months because we both believe that someone out there will benefit from what we have to say. What Chris went through was scary enough because of the incompetence of some of the people on his medical team.

Chris has been a dialysis patient for almost a year. He developed auto-immune disease which morphed into nephrotic syndrome as a result of an allergy to Amoxycillin. When he started dialysis, he had no idea that he would eventually have to question every procedure, as opposed to merely “accepting” procedure because doctors claim to know better. In his experience, they don’t. We’re sharing this to prevent {what happened to Chris} from happening to anyone else.

A few months after the start of dialysis, Chris developed what he thought was a cold or chest infection. He had coughing fits that he could barely manage with cough drops and he found it difficult to breathe after just walking across a room. He would go to dialysis at the Davita Center {in Pennsylvania} and tell the technician that he was having trouble breathing. They responded by giving him oxygen but didn’t really relay the information to the doctor. By March, he’d reached a point where he couldn’t walk but a few feet without having to stop.  He went to an Urgent Care Center and had a chest X-ray which revealed that his lung cavities were filled with fluid. He drove himself to the ER and was admitted but they still didn’t know what the issue was. “Pneumonia” was suggested, but they still couldn’t even say for sure if they thought it was bacterial or viral pneumonia. After tests and a dialysis treatment the next day, they released him with antibiotics and steroids, but he was still having coughing fits and shortness of breath. He was led to believe that the antibiotics would take care of the “pneumonia” but the fluid in his lung cavities was still in there.

Fast forward two weeks {and a 1,000-mile road trip later}…

Chris made an appointment with the Urgent Care Center not far from where we live. When they did another X-ray and saw the fluid in his lung cavity, the doctor told him to get to ER right away and have someone drain the fluid. When all was said and done, they’d pulled out 2.5 liters of fluid and treated him for a pleural effusion. After his release from the hospital, he followed up with several doctors who eventually discovered that the technicians weren’t taking enough fluid out of his system during dialysis. Six weeks after Chris was released from the hospital, he had a follow-up appointment with the pulmonologist {who drained the fluid from his lung cavity} and, in 6 weeks, the fluid was starting to build up. Again. The pulmonologist then decided to establish a direct dialogue with the dialysis center to make sure they were taking enough fluid during his dialysis treatment. Additionally, there were several more follow-up appoints to monitor his recovery from the fluid drain and address further health issues. Chris experienced a blood pressure spike which caused a blood vessel to leak protein in his eye; he had to have a shot to absorb the protein before eventually having laser surgery to seal it up.  He also recently had 3 stints put into his arm to open up the veins.

Upon resuming dialysis, after his hospital stay, he learned that it was necessary to pay closer attention to what the technician does, with regard to  the machine settings. It wasn’t until recently that the center put him into a section with a specified technician who knows how to make dialysis more comfortable for Chris. He has experienced what he calls “crashing” {sudden blood pressure drop} due to the wrong rate settings. We recommend that anyone who has regular dialysis treatments ~ particularly those who are new to the procedure, take the time to learn about every aspect of your care. We’re writing this to share the lessons we’ve learned in the past year because we want others to benefit from our firsthand experience. {Disclaimer: The following list is not intended to offer personal medical advice, diagnose health problems or for treatment purposes. It is not a substitute for medical care provided by a licensed and qualified health professional. Please consult your health care provider for any advice on medications.}

  • Talk to your dialysis technician{s}. It’s important for every technician involved in your care to know exactly what works for you. Dialysis is not an easy thing to go through and you must remember that you’re your best health advocate. You will be more comfortable if you’re a proactive participant.
  • Pay close attention to what your body is telling you. If anything causes you discomfort or if you experience anything you haven’t experienced before, say so. Keep detailed documents of your symptoms and anything changes you notice. Tell your doctors and technicians and keep telling them until someone listens and takes action.
  • Make sure that whoever performs both assessments at each session takes the time to really listen to your heart, access, and lungs. Chris has experienced assessments performed by someone who goes through the motions so quickly that she couldn’t possibly effectively notice any changes. If you feel that a technician is “skimping” on your assessments to save time, tell someone. If someone fails to do a thorough assessment, it could mean they’re overlooking fluid build-up, a clogged access or other important changes.
  • If you’re not happy with anyone involved in your care, search for someone else. Chris has felt let down by many of the doctors and technicians he once trusted. In some aspects, he still observes incompetence and,  as a result, he plans to: a/ request a new kidney doctor; and b/ contact the corporate offices of the dialysis center to talk about what needs to be addressed.
  • Pay attention to your numbers, particularly iron levels. When Chris was living in Pennsylvania he usually hovered around 7.5, apart from once when it dropped to 5.3. He had to have a blood transfusion which brought it back into the 7’s. Before leaving Pennsylvania, regular B-12 shots and iron supplements helped raise his iron levels up to 9. Currently, it’s up to 10 or 11, which is the highest it’s been since he was first diagnosed with kidney failure. We think that it’s due to increased exposure to the sun; it jumped to 11 after a day at the beach. Although we’ve not had this confirmed by the kidney doctor, we’re pretty sure that Chris feels better being in a warmer climate. Because dialysis makes him feel cold, the sun helps him warm up after a session.

If anyone reading this has had similar experiences with fluid build-up, problems with dialysis machine technicians, we would be very interested to hear your story. Also, if you have any questions at all for Chris about any aspect of his illness or treatment, please get in touch. We are here to help by sharing what we know. If you have anything to add to the bullet list, please post in the comments.

Until next time…

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