chrishansenhome: (Default)
The District Nurse came today and we decided to change the dressing on my PICC line. First mistake: never do anything unsupervised when you've not done it before. Second mistake: don't do anything out of the ordinary on a weekend, medical-wise.

She is a good nurse but she was relying on me to tell her what to do (since I've seen it done often). I did my best, but she wasn't following my directions—specifically, she wasn't removing the dressing correctly and didn't listen when I told her how to remove it from around the port area.

The result was that about 1 cm of the tube came out of my arm due to her tugging.

She said that she would call the hospital and ask what to do, and I told her that she would be very lucky to get hold of someone who could tell her what to do. This was around 1 pm. At around 5 pm she called me back and said that indeed she hadn't been able to get to the person who could tell her what to do. The microbiology department suggested that I go to A&E (=US "the emergency room") and have an X-ray to ensure that the tube was still in a relatively good position. I can imagine that showing at up A&E at 6 pm with an emergency that was non-bleeding and non-painful will involve being seen at around 10 pm, if then. I told her that instead I would like to skip tomorrow's antibiotic and go into the Foot Clinic Monday morning to have it sorted out. She wasn't too happy with that and is calling other doctors for their opinions.

I am very annoyed about this. Worst case scenario is that I have to have this line removed and another one installed. The tube can't be re-inserted due to the fact that now that it's been out of my body it's gotten germs of one sort or another on it and if it were put back in it would insert the germs directly into my bloodstream, which is not a good move.

It is so important that nurses who work in the community be trained to work with PICC lines in their entirety, especially when it comes to dressing changes and unforeseen circumstances such as blockages in the lines. And it's important that when things go wrong during the weekend someone is available and on call to deal with it.

Crumbs.

Edit: The nurse came back, with reinforcements. A doctor on the ward told them that as long as they could withdraw blood from the line it would be fine. So they withdrew some blood and it looks OK for now. They will put some antibiotic in tomorrow, slowly, and Monday I will go to the Foot Clinic and probably spend all day getting this sorted.
chrishansenhome: (Default)
Don't get me wrong; I love the NHS. However, the fact that its various bits and pieces are not joined-up in any meaningful way makes me very angry indeed.

First, I am getting IV antibiotics at home. This entails sitting in a chair, having a bag of antibiotics hanging off a nail I pounded into the door hooked up to my PICC line (which has now become a friend, a very intimate one at that) by something called an infusion kit, which consists of tubes and a little pot into which the bag drips drops of antibiotic that are then taken into my vein by the tube.

Now when I got the prescription for the antibiotics from the hospital, they sent along the antibiotic and the bags of saline and the hepsal ampulles for flushing out the PICC line after the IV is finished. They did NOT include any infusion kits, and when I enquired, the pharmacist said that the doctor hadn't ordered any on the prescription. I was going to say, "Well, what are the nurses to do, attach the bag directly to my PICC line and squeeze the contents into me?" but I nobly refrained.

My life since then has been a daily struggle to get infusion kits. The visiting nurses don't have any (or many: I just got word that they scrounged four), my GP doesn't have any, no one can find any anywhere. I called the Diabetic Foot Clinic at Kings, and they had some left over from a study that hadn't expired. However, they are tinted because the fluids they were delivering were light-sensitive. No matter, I could use them. However, I had to get down there to pick them up.

Well.

Second, I needed to renew my prescriptions and get a new one for Novorapid insulin cartridges, which had been prescribed by the foot doctor at Kings, to replace gliclazide, which doesn't seem to be working. So, when I dropped my prescription off last Friday, that was one of the items I requested. The sign on the wall said I could pick up the prescription on Monday, but when I hobbled there yesterday (and I took a bus ONE STOP to get there because my foot ached so much) the receptionist said that it was 48 business hours before prescriptions were ready. So I was crestfallen, hobbled back home, and didn't want to hobble to Kings.

Today I hobbled out at 1:30 pm and went to Kings College Hospital to pick up the infusion kits and my foot diary (I'm in a study that required me to keep diary entries) which I had left there last Friday. The waiting room was chock-a-block because much of the staff was off sick, and the receptionist there didn't know what I was asking for. One of the reasons was that I'd forgotten the name of the study nurse and asked for the package Arlene had left me, instead of the package that Audrey had left me. She finally got someone to get me that package. One task down.

I took a bus back to the Elephant and went to the GP's surgery. I got my prescription after waiting on line for 10 minutes while an elderly lady asked many questions about her prescription of an obviously-bored receptionist who didn't know the answers. However, the Novorapid cartridges and needles weren't included. She said that they might have had to be authorised and I should return tomorrow morning. However, I asked her to ask my GP to call me so I can get some answers to all this. No call yet.

So, NHS 1, Chris 1 (as I got the infusion sets). I am almost out of Novorapid and I am desperate to replenish that. To be continued tomorrow, with a happy ending (I hope).

Yesterday

Oct. 3rd, 2009 01:40 pm
chrishansenhome: (Default)
As most of you will be aware, I'm a diabetic and constantly have to go to the quack for this checkup or that checkup. For my foot I go to Kings College Hospital Diabetic Foot Clinic. For diabetes itself, I am currently attending the Diabetic Clinic at St. Thomas's Hospital. I go to my own GP for prescriptions and anything other than diabetes.

A couple of months ago I got a letter saying that I had an appointment with the lipid nurse at the Diabetic Clinic at St. Thomas's. OK, no problem. That's all the letter said. No instructions about what to bring (urine sample, perhaps) nor restrictions on whether I could eat before the appointment.

The rest of the background to this is that, while taking simvastatin my cholesterol has been normal to low (for a diabetic) and my ratio of good to bad cholesterol has also been very good. So seeing the lipid nurse or doctor isn't top-of-mind for me.

Yesterday I turned up at St. Thomas's at around 11:05 am, saw the receptionist, then went to wait. The nurse's assistant came out and took my blood pressure (127 /71!) and weight (not so good). To the waiting room again, where a few minutes later the lipid nurse emerged and called my name. Into her office we went. She is from a middle European country and had the accent to match.

She started by asking a few questions which others had asked me before in the clinic, and the answers to which were on her computer. Then she said, "You've been fasting, haven't you?" I said, "No, I haven't." "Why not?" "The letter I got didn't request me to fast and the time of the appointment (11:30am) wasn't conducive to fasting, anyway."

She looked at me: "You should have known when you made the appointment that you needed to fast." "Hold on," I said, "First, I didn't make the appointment—the clinic made it. Second, I'm diabetic, on insulin at night, so morning fasting could be dangerous for me." She was wearing my last nerve very thin indeed. She then ordered me to fast whenever I come to the lipid doctor or nurse.

Then she came to my record and asked me whether I had any family. I mentioned that I was married in a civil partnership. She said, "There's nothing here to allow for a civil partnership. I'll put you down as 'Cohabiting'." I replied, "No you won't! Civil partnership is equivalent to marriage, so you will put me down as married." Nerve is now even thinner.

She then said, "Do you have brothers and sisters?" I replied, "Yes, one of each." "We must make sure they know that they are at risk for diabetes and hypertension genetically." I looked at her and, as calmly as I could, said, "My brother had a heart attack at the very same age I did, with angioplasty and a stent, just as I had. He was at the same time diagnosed with diabetes. I think he knows already. My sister is well aware of my brother's and my situations, so I'm certain she knows of her own risk as well. In any case, they both live in America so the NHS won't be taking care of them anytime soon."

She then proceeded to lecture me on the evils of bariatric surgery, telling me about the grim side effects and promoting the virtues of simply eating less and exercising more. I had really had enough, and told her that I had been lectured like this for the last 50 years or so, and none of it was helpful enough to help me to lose weight. I know all this. What I need is help to lose weight, and bariatric surgery is my last hope of outside help bar wiring my teeth shut; it has also been shown that certain types of bariatric surgery assist in fighting off insulin resistance in your body, even before weight loss has begun.

She ended the appointment by giving me a ticket to have blood drawn for lipid testing, saying that the fact that I hadn't fasted didn't matter, really. Some other tests would be run and when she got the results she would send them along to me. I told her: "I already get enough bumpf from the NHS—please don't send me the results unless I need to follow up on them in some way or other. She countered: "We like to keep our patients involved in their treatment." I had to be firm: "Let's save the NHS some money and not send results unless something or other needs to be done, please. Thank you." Reluctantly, she agreed.

Those who are familiar with the "Carry On..." movies will remember the Matron, Hattie Jacques, who was a blunt, no-nonsense head nurse in many of the films. The Lipid Nurse reminded me of the Matron, so sure of what she knew and imposing it on everyone else in the hospital. It goes to show you that a good "bedside manner" is vital when doctors or nurses are dealing with patients; how much brighter and useful would this appointment have been if the Lipid Nurse's manner had been helpful instead of confrontational.

I emerged, had my blood taken by a lovely nurse (all the nursing staff who do the routine vital signs in the Diabetic Clinic are a joy, especially the dishy young man who was also in the Cardiac Intensive Care unit when I was recovering from my heart attack) and then marched back to the bus for the trip home and to lunch in the church Drop-In. I was not best pleased.
chrishansenhome: (Default)
A medical doctor (who shall remain nameless, of course) asked me to connect on LinkedIn. I am a member of various lists that encourage linking, so I accepted his invitation. His business was around healthcare with an emphasis on healthy living, so I enquired about it, thinking that it was some sort of motivational method. I got back an email which made it plain that you had to buy some food from him to do this method, and that since he couldn't ship it to the UK (for some unspecified reason) I would be able to get some by having it shipped to an address in the US and then reshipped here.

I thought to myself, "That's more complexity than I want to handle," and emailed him to that effect, and said that when and if he shipped to the UK I would revisit the subject.

In return, I got this email:

I got that. Just let me know when you decide that a fortune robbing, premature, painful, prolonged death is, indeed, more complex than the simple details of shipping to you the solution to your health problems.

Gobsmacked, I replied:

Goodness, your bedside manner leaves much to be desired. Please don't communicate with me any more, thanks.

and proceeded to delete him from my LinkedIn contacts list.

I suppose that he was sick the day they taught bedside manner in medical school.

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