Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Uncategorized

Patient’s Patience

I’ve been trying to remind myself all day to be a patient patient… which would be someone who is able to tolerate delays in their medical care. Living with CRPS and gastroparesis, I’m used to playing the waiting game. I waited for doctor appointments and tests to be scheduled. Then I waited for results to be available. I waited years for both diagnosis to be made. Then I waited while treatment plans were made. Then I waited for insurance approval. Then I waited for appointments to be scheduled. Waiting is something that those of us living with chronic illnesses often get tired of doing.

For the past year, I’ve had a picc line and home health care to run daily IV fluids to help offset the dehydration caused by my gastroparesis. However, yesterday changed that. Yesterday morning, my home care nurse had come out to change my dressing/bandage and draw blood for labs. When she flushed the picc line after drawing blood from it, fluid shot out. I thought the saline solution had come out at a spot it’s not supposed to. However, the nurse thought she had not tightened the extension on tight enough. She has a nursing degree and it happened so fast that I wasn’t really positive where the fluid had come out, so I took her word for it that everything was okay.  She went ahead and flushed the picc line and everything seemed okay.

Later yesterday evening, I flushed the picc line again and started my IV fluids. My wheelchair kept being wet and I didn’t know why. After about ten minutes of trying to figure it out, I discovered that my IV fluids were dripping out on me rather than going into my body. I stopped the fluids and clamped the picc line so nothing else could leak out. I’d had a hole in the IV tubing a few weeks ago and blood had backed up the picc and dripped out in the floor, so I knew I had to get it clamped off before blood started backing up. I called my doctor, but couldn’t get the person on the phone to understand that I knew where the liquid was coming from and it was the picc malfunctioning. The person on the phone kept telling me my extension just needed to be tightened, but I knew the liquid wasn’t coming from there. They told me to call my home care nurse to come out and look at it. So, I called the home health nurse. She didn’t have to come out. She knew what my picc line looked like because she cleans and dresses it weekly. I was able to describe where the liquid was coming out and she knew my picc had a problem she couldn’t fix, so she told me to go to ER.

After sitting for three hours in the ER waiting area because the place was swamped, I finally got to see a physician’s assistant around 9 last night. She said they would have to flush it to see what the problem was. Ding ding ding. I was the winner. When they flushed the picc line and the liquid came back out exactly where I said it was coming out. Sometimes I feel like doctors, nurses, and others in the medical field think we the patient don’t know anything. I’d had the picc line for a year, I knew there was a problem. The spot where the liquid was coming out was in the middle of the part they put in my arm, it wasn’t where the extension screwed on. So, ER put in a regular IV access and ran my IV fluids for me. My fluids have to be run over four hours, so I was in ER until 2:30 this morning waiting for the fluids to run in. I needed the fluids and was thankful they ran it for me. When they started to release me, they went ahead and pulled the broken picc line out, so I didn’t have to deal with a broken picc. They gave me orders to call my doctor when they came in.

I called this morning as soon as it was time for the doctor’s office to open. Luck was on my side, or so I thought. Someone actually answered the phone instead of it going to voice mail. Unfortunately the person I needed to talk to wasn’t in. She wouldn’t be in until around eleven thirty today and I would only find that out by calling again two hours later. As I said, I’m used to the waiting game. When she returned my call around one she said she would see what she could do about getting me scheduled to get a new picc line put in, but it probably wouldn’t be until sometime next week.

As I sit here typing this it’s  almost eleven p.m. I’ve been vomiting all day and have no way to run my hydration fluids.  I may end up back at ER before the weekend is over for fluids. I’ll just have to wait and see how everything plays put over the next few days. I have the fluids. I just don’t have an IV access site to connect them to.

So, the waiting game continues. Some people say I’m just not aggressive enough when I call. I realize that the person on the other end of the line is working with more patients than just me. They are human and need to be treated with respect also. I’ve waited as patiently as I can. I only called and spoke with someone at the doctor’s office five times today. I wasn’t just calling to see what they were doing, I had questions about how to survive the weekend. I have a very strong dislike for weekend emergency room staff and try to avoid weekend and holiday trips to ER if at all possible. I was just trying to make sure I have the best weekend possible. So, I’ll continue to wait and pray that the weekend passes without any issues requiring immediate medical attention. They are definitely trying this patient’s patience.

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