Life with Home Health – PT & OT.. what a challenge!

In August of this year, 2023, I started my newest adventure. I’ve entered a new phase of my life since I started using the Trilogy machine 24/7. I went from using 8LPM of oxygen 24/7, with the occasional daytime need of Bipap support, to needing 10LPM of oxygen and the use of the Trilogy machine around the clock. That was within a 2 month period of time. In hopes of stabilizing my downward trend of my health and to regain some endurance, my doctor and I decided that in-home physical and occupational therapy through Home Health was in order. Along with the two therapies, a nurse comes to my house to check my vitals and to see if I need help with supplies or to do my lab work. 

Getting started with in-home therapy was a scheduling mess. The doctor contacted a home health agency and sent them the orders for the therapies & the nurse care. The home health agency contacted me immediately (while I was sitting in the doctor’s office!) to start the ball rolling with scheduling an in-home evaluation. 

The Home Health representative came to my house for their evaluation and told me what my insurance will cover. He stated that a Physical Therapist & Occupational Therapist, a Nurse & a Social Worker would be calling for their first visit evaluations. Each person went over my health issues, took my vitals and what my goals were for each therapies. By the last person, I was getting tired of repeating myself because the PT and the OT were from different companies since the agency didn’t have both PT and OT available. 

I will admit that I was really overwhelmed and clueless as to what to expect. The Social Worker never called me. I had to track him down through the home health agency to make an appointment. (more about the social worker later). 

I went from just having my weekly oxygen guy showing up at my house to having up to 4 weekly appointments. Normally, I don’t have people in my house (except family and friends). It can add stress. Plus the need to lock my dogs in a room the whole time the therapists are here puts stress my dogs but they’re starting to get used to it. 

For appointments, I have the same therapists. It’s really nice because we can get to know each other.  This allows us to build a trust in knowing where that fine line is between pushing to build endurance and strength to pushing too far and causing pain or soreness. Believe me, we found that line. 

Occupational Therapy works on my upper body strength and the Physical Therapy works on my lower body strength. Because of my insurance, the two therapies cannot overlap each other. OT can’t cover lower body exercises and PT can’t have me doing exercises for upper body. With OT, I have learned that I’m woefully lacking in many areas of upper body strength. My upper body is always tense from struggling to breathe but my hands are strong though! Building strength is good but building my endurance is much more important to me. OT is a slow process due to my respiratory and cardiac issues. 

My Physical Therapy focuses on my legs and hip strength. This is vital for helping me to lift myself off the floor easier and build a stable balance. I have pretty good balance while walking. It’s necessary in order to walk around my house with a long oxygen tubing on the floor. Plus, the tubing from the Trilogy and my oxygen can get tangled or caught on corners a lot. Have to watch out for my little Willow who likes to circle my legs as I prepare her dinner. I do what I can for myself but it’s still the shower that I need help with but therapy has made a small difference in my endurance that’s noticeable already.

In each therapy, there are rest breaks. When I start to have shortness of breath, I sit down and take my oxygen saturation measurement & heart rate with a pulse oximeter. The therapists lets me tell them when I’m ready to go ahead with more therapy exercises. I know my body, I know my heart rate and how well I’m breathing and for them not to push me is a HUGE plus in their favor. However, I don’t take advantage of them. I really want therapy to work. I’ve learned a lot about myself. How I seem to hold my breath while I do certain exercises such as the Stand Up and Sit Down on repeat. Granted, it’s NOT easy to time my breathing using a Trilogy that assists my breathing on a semi-timed function. Explaining this to each therapist was super fun. 😉

I will keep you updated as I venture more into my PT & OT experience. I really like all three ladies. The RN is super helpful but she’s only needing to come to my house twice a month since I’m pretty stable and I really am in tune with what’s going on with my health. Besides, she’s just a text message away and I REALLY like that because it gives K and me a peace of mind.

If you have any questions, let me know! Hope you are enjoying the cooler weather! Don’t forget to subscribe to my blog if you are a new visitor.

With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

Staying on top of your health care…

Living On Oxygen for Life

I can’t stress to you enough the importance of staying on top of your health issues and insurance coverage.

If you haven’t already, read through your health insurance information. There are different kinds of insurance coverages out there. If you are on Social Security Disablity with Medicare, some states offer Medicare HMO plans instead of being on just straight Medicare. If you have extensive health problems, such as what I have, the Medicare HMO plan benefited me the most when it was the only thing available to me. (ie: my husband didn’t have his health insurance benefits yet)

Medical coverage changes yearly. So, it’s important to read your manual when you get it by mail. If you can’t understand what you read, either get a family member to help you or call the 1-800 number. It’s the Customer Service’s job to help you. No question is too silly to ask and ask them until you understand what you are needing to know.

In the U.S. there are other insurance plans out there, such as PPO’s, HMO, Pay-per-Visit (I think that’s what it’s called), Medi-gap and Medicaid. If you have a PPO and Medicare, it’s important to know which coverage is the Primary insurance policy. Read the fine print and call each company and find out before you go to the doctors. Believe me, screwing up the billing is a pain in the rear!

Staying on top of your health care is so important. It’s also important to make sure that all your doctors are communicating with each other to give you the best of care. If you go see, for example, your cardiologist and he recommends to see your pulmonologist, then he should be sending your PRIMARY CARE PHYSICIAN (ie: Family Doctor) a letter stating how the appointment went and what the test results were if you had any done. In the past, doctors use to do this automatically. But now, I’ve noticed, this doesn’t seem to happen. I’m always asking the doctor to send my primary care physician a letter concerning the appointment that I’m in at the time. My PH doctors actually ask ME to whom I want them to send a letter. I tell them, my cardiologist and my primary care physician so that one hand knows what the other is doing… so to speak. In my case, my lungs affect my heart and my heart affects my lungs and all of these problems can have an effect on my only kidney I was born with. Yes, I was only born with one kidney. So, I really have to be on top of things and so do my doctors.

Admittedly, it’s a lot of work. However, it’s worth it because I want to live as long as possible and have my life to be a quality one. The other thing I want to mention is that someone, a spouse or a close family member, needs to be aware of all your health issues. This is in case something drastic happens and they need to make decisions for your health care because you are unable to do so. A good thing to have is an Advance Directive, Living Will, or even a DNR document. Do a Google search for these documents based on the state/country you live in. Planning for the future can give you peace of mind.

In other news, I have been really excited about cooking Thanksgiving but now we have been invited to go to K’s aunt’s Thanksgiving dinner. I was thinking that we were going to be able to cook our own Thanksgiving dinner the following weekend but that Saturday, K has to work and then we leave for New Orleans! (unless the weather turns bad!) You heard me right! Another fun road trip with my pup, Rocco and Klondike–the road trip mascot!! So, maybe a Christmas dinner will have turkey instead. Tomorrow, I’m going on a date night. How exciting!!