I have multiple chronic illnesses, such as a lung condition called CTEPH (a type of pulmonary hypertension), psoriatic arthritis, ankylosing spondlitis, severe hashimotos hypothyroidism, and adrenal insufficiency. I’m on high dose steroids, which affects my blood sugar levels, so I’m temporarily diabetic on top of all of that. Oh, and I’ve had three strokes, and can’t walk because of balance issues (I fell and shattered my ankle because of balance issues so I don’t walk any more). I’ve had three surgeries on my ankle and I have a prosthetic heart valve that was replaced by a TAVR  procedure.

I’m a mess. I’m sure there’s more here that I’m forgotting to include, but that covers the big stuff. So to help us out, our hospital social services coordinator thought that putting me on palliative care would be a good thing. From the outside, it sounded amazing. I would get physical therapy and occupational therapy right in my own home, and instead of having to get dressed (which isn’t easy to do),  get my wheelchair and oxygen tanks to go to the doctor, they would come to me. The doctor would come to the house and I’d get weekly nurse visits on top of it all, to make sure my fluid retention wasn’t getting oout of control and to monitor my condition weekly instead of waiting months between doctor visits in person.

I could still see my specialistss, but I had to give up my primary care doctor because insurance will only pay for one primary care and they consider home health the primary care. Now, remember, this was palliative care–that’s one step before hospice care and is often provided by hospice organizations. It means I’m very sick but not quite ready to stop care and go to full fledged hospice. With hospice, you have to stop treatment. I’m not ready to stop treatment. I’m still fighting for my life every day–not ready to go anwhere!

The thing is, we had two different home health agencies, and I swear they hire only people who phone it in and don’t really care about the patients. It’s hard for me to let someone into my house too, but that’s a personal thing. Still, if I’m going to let someone come in ever week, and it was often a different person each time, no consistency, it has to be someone that I feel comfortable with. I get used to my doctor’s offices with the same employees each time, but this home health used different nurses each visit. We sometimes got repeats but rarely. Now keep in mind, this was two different agencies in the Houston, Texas area. We should have good health care here, but the home health sucked.

If I need something with my primary care doctor, I call her up and leave a message or use the electronic chart to send a message and I usually get a message back the same day or the next. But one time we called the home health doctor and the receptionist who answerd the phone said, and I’m quoting here, “The doctor will call you back if she thinks it’s important enough.” Seriously, that’s a direct quote. I was calling because I thought I had a UTI. It took three days, of pain and suffering, before she finally called in a prescription. The only reason I know she got the message is because my pharmacy called and said the prescription was ready to pick up and I knew what it was for. She never did call. She never followed up to see if I cleared the infection.

The occupational therapist usually just spent 45 minutes playing with my cat instead of working with me and physical therapy did nothing for me that I couldn’t do by myself without their help.

She even told me she was used to working with frail little old people who don’t need much but to keep moving. I was wanting to actually strengthen muscle and try to walk again! And it was all or nothing with them, if I wanted to do outside PT, I had to drop ALL the home health including the skilled nursing because if I were in good enough shape to go to PT, I obviously didn’t need the nursing and they couldn’t justify it to the insurance company.

We had messages we left go completely unanswered  or unresponded to. We had appointments where the PA  was supposed to come and they never showed up. We had the agency lose a PA and just not replace them for us for several months, without any primary care while waiting for them to replace that position.

I don’t know how frail people who don’t have someone to help them work with home health. I honestly think they figure people are close to death so what’s the point of helping them try to improve? But I wanted to get better. I didn’t want to just roll over and die.

I’m glad we made the choice to drop home health. I’m back with my favorite primary care doctor, and she’s wonderful. She’s also not afraid to prescribe pain medication to somone who lives with chronic pain–and home health refused to prescribe pain meds and refuse to let you see another doctor who might be willing to do it. I suffered for three months without pain meds or only using tramadol (which does very little for me), and it was like sheer torture. I don’t take pain medication often but when I need it, I need it. I spent days curled up in bed crying from the pain.

I worry about old frail people who are on home health and have no advocate. I wonder honestly how many people bad home health kills each year, but because the person was so sick they just assume it’s their health that did them in. I will one day need hospice care and I hope to take advantage of that but I will never do home health again as long as I am capable of going myself, however difficult it might be. Plus, it’s good for me if I’m still wanting to fight for my life to actually get up and do these things for myself as much as possible. Even when it’s hard. Maybe especially when it’s hard.

Your mileage may vary–maybe you had a good experience with home health? I’d love to hear it because I had two agencies that were subpar and I say home health sucks. I won’t ever try it again.

Love and stuff,

Michy