Can you tell us a little bit about yourself?
John Jordi: My name is John Jordi. I am a lymphedema therapist but I have been in physical therapy for the past 30 years. I’ve been a lymphedema therapist for about the past 24 years. I’m a certified instructor for the academy. I’ve been a senior instructor there for a lot of years. I’ve done a lot of treatment over the years, all related to lymphedema at this point. Currently, I’m holding a job working in a vein clinic and also working as the clinical manager for Juzo USA.
What inspired you to become a physical therapist and work in the lymphedema field?
JJ: So physical therapy: I graduated from Minneapolis and just it was a great job fit for me. I was an athlete, I liked working with athletes. I got interested in wound care at some point and when I was working at the hospital here we were doing a lot of things with wounds that weren’t always working. Many times I had done wound care programs where they talked about fibrin issues and protein issues and a therapist had gone to a class specifically to treat this. I was so interested I became a CLT (certified lymphedema therapist) myself. What happened was I completely changed the wound care at the hospital to address veins and venus wounds and venus insufficiencies and chronic edemas in a very different way with amazing results. That just really inspired me to stay in the field, and since then I’ve continued to progress along doing multiple research projects with universities as well as becoming an instructor for the school I learned from.
What have you noticed in changes to how lymphedema has been treated over the year? What’s better? What’s the same?
JJ: Lymphedema, when I first started back in ‘99, things were really unknown, at least in my general area. What we had noticed is that the treatment had really moved quickly. We had 5 lymphedema programs in town within just a few short years and we saw a lot of really good outcomes and patients getting a lot of treatment. Things that are different now are that there are no big lymphedema programs any longer in my general area and we’re seeing a much smaller scale. I think that’s becoming a problem is that patients don’t always have a lot of places to go anymore because therapists don’t always have the interest or it’s just been really difficult. That’s one of the changes that’s not been great.
One of the big changes that happened a couple of weeks ago is with the advent of the lymphedema treatment act you know compression garments, that’s really been one of the hardest parts. Patients haven’t always had access to garments– if you’re on a fixed income, medicare– these are very expensive garments and they’re absolutely necessary. I tell therapists when I teach classes, “If you don’t end a patient in compression garments, you have not finished the job.” Patients need to end in a garment so that they feel like they have some level of normalcy and some ability to take charge of their own lymphedema issues. If you’re on medicare if you’re on fixed income a lot of these things become a problem. Now that this pass-through legislation has become official, there’s the potential that these patients could be getting garments and we could be seeing an increase in lymphedema programs because patients now can get treated and they can finish treatment appropriately.
What is a piece of advice you would give to someone going through treatment right now?
JJ: What I would tell any patient is if you’re going to start this, you need to be ready to finish and you need to be all the way in. Patients who just dip their toe into lymphedema treatment almost are always frustrated because they think they can do a little bit here, a little bit there and they’re gonna get better. The fact is, you don’t get better at all. You’re actually going to see yourself continue to get worse over time because lymphedema is unrelenting. It never stops progressing if you don’t do something about it. Constant compression and constant containment is really the key factor. You have to do your part. I remind many patients it’s like having diabetes. If you don’t manage diabetes it will manage you and there will be long-term consequences you may not always get to choose. Treat it now, treat it aggressively, and get a handle on this.
For a therapist, I would tell them to vet the patient well. Make sure that the patient is already ready and fully understands what the program is because therapists who let the patient drive the treatment program really end up doing a disservice to the patients because the patient doesn’t know what they don’t know. The therapist should be able to educate them during the evaluation to make sure the patient fully understands what they’re getting involved in so when they’re ready, they’re really ready. I make it akin to this– what physician would ever tell a patient, “We need to cut your knee off. We’re gonna replace it with metal and plastic inserts and put you back together. You’re gonna have a lot of discomfort and a lot of problems and that’s your total knee replacement.” Nobody begins with that. We know that there’s a lot of work to a knee replacement but what we focus on is the after-effects– the outcomes, the long-term independence that you’ll have from being free of the pain, the joint dysfunction, and all the other problems that come with knee arthritis. In lymphedema, we only focus on the problems, not on the long-term. That’s where we need to focus. If patients understand I will learn how to manage this myself, I will learn how I can be independent, and I will learn how I can get the better part of my life back. Yes, I’ll have to make changes but what we’re really after is for the patient to be able to have a new normal that they can find accessible and that’s the responsibility of a therapist to help educate that patient to understand it.
How do you work with Pretty in Pink?
JJ: How do I work with Pretty in Pink? The important part is that Pretty in Pink has really done a great job as a DME provider for patients. Now, what is DME? It’s durable medical equipment. In lymphedema that’s a really imperative part of treatment. You cannot treat without having it in hand. When I’m looking for patients to get their benefits, we utilize a company like Pretty in Pink to look at all their benefits and get the maximum for the patient. We’re talking about bandaging we need to reduce the patient so I need to know that they can get the bandaging for the patient. I need garments and then I also need nighttime garments because compression is required 24/7. Patients without consistent containment and compression will get bigger and the garment won’t fit so they need to have all of that. As a therapist, I’m concerned about the treatment of the patient. I don’t want to have to think about what garments am I going to choose right now or what’re their benefits. I want to know that I can treat my patient and be thinking long-term, that I need day and nighttime garments, and bandaging for reduction, but I’m also thinking can I get this treatment done? I still have to focus on therapy and what their benefits are for therapy. I want to just submit off the information of what I want and let a company do the job right. I’ve worked with other companies that haven’t always been helpful. Pretty in Pink has always been able to step up and say, “Hey, by the way, did you know that they have benefits for a nighttime garment? Have you thought about this type of product?”
What I really like is that their clinicians and certified fitters aren’t just somebody that doesn’t know products or patients. These are people that also work in the field just like I do. When I’m making decisions, they’re also bouncing ideas off me to make sure that I’m getting the best for my patients. I like that they can do all the billing, I like that they can do all the work, and I like that it’s all remote. Where I live, many patients say, “do I need to drive to this place?” The fact is no. I do all my own fittings and I manage all that but the patient can get all the billing done in a proper and appropriate way to make sure that they’re getting the maximum amount for their benefits. I really appreciate the fact that Pretty in Pink can manage all the billings and all the ordering and they send it straight to me so I can fit the patient and get it done right.
Pretty in Pink Boutique
If you or a loved one is struggling with lymphedema, Pretty in Pink Boutique is here to provide support. Call them at (615) 777-PINK or email firstname.lastname@example.org and let them know how they can help!