M. BLOOD PRESSURE*

M. BLOOD PRESSURE*2023 update

My advice: This may not be as big and issue for others as it is for me but in my case in recent years, I have found that I need to have a blood pressure machine on hand at all times at home, some GTN patches, and I need to drink a lot of water. The main problem for me is low blood pressure. The solution seems to be to drink lots of water, including hydrolytes. The less common but more serious problem is high blood pressure when I have bladder problems such as catheter blockages.  I need the GTN patches to keep my blood pressure down while I get the catheter unblocked.

My experience

Low Blood Pressure

I think I started having low blood pressure issues in 2016 or so. At the time, and for many years I had no idea what it was. I was getting blurry vision in the mornings and finding it very hard to push anywhere or do anything much sometimes. I went to doctors. And had a range of investigations to do with hearts and lungs and respiration and so on. None of these really helped me and the problem got worse without me understanding what it was.

I had a BP machine, but it was one that involves putting a cuff around your bicep, which was quite awkward to use so I didn’t use it all that often. I can’t remember exactly why, but eventually I bought a blood pressure machine that attaches to the wrist, which was much easier to use, and so I did use it much more often. It was only then that I discovered my blood pressure was usually extremely low when I had these feelings, and that really explained all the symptoms that I had been having for many years and continue have.

It was then a different issue to know what to do about it.

What I have ended up doing is getting better at recognising the symptoms. When I’m feeling exhausted and incapable of doing anything, and my shoulder pain is particularly bad; instead of assuming that it’s just me not feeling well, which tends to be what I immediately think, I now acknowledge that this is very likely low blood pressure.

I then go and test my BP. When I am feeling okay, it is usually 100/70 or 90/70 somewhere around that. When I feel bad it is below 90. In the 80s, I tend to just feel tired. Below the 80s I get really bad. I have trouble moving anywhere or doing anything.

Anywhere below 90 I need to drink some water, preferably with something in it like fruit juice or sugar or hydralyte. Then I sit still and hope it improves, sometimes I have even had to put my feet up. It can be worse after a meal, this is called post prandial hypotension. In can also be worse in hotter weather, possibly because you need to drink more got stay hydrated.

I also try to stay well hydrated all the time to try prevent it happening in the first place, but I don’t seem to be very good at that so it’s an ongoing issue.

High Blood Pressure

Around 2018, I started having a lot of cases of bad autonomic dysreflexia that turned out to be blockages in my catheter that I didn’t recognise for what they were. I guess I didn’t recognise them because I hadn’t had that problem much in the past. When I had dysreflexia prior to then, it was usually an infection, at least that’s what I thought at the time.

As a result I ended up in emergency in hospital a few times with bad cases of autonomic dysreflexia, and very high blood pressure where they had to identify that my bladder was overfull and unblock my catheter. That could be done quite quickly, and they would then send me on my way. I learnt from experience that it is pretty straightforward to recognise when my catheter is blocked and pretty straightforward to fix it.

From that experience I learnt that if I start to get any persistent dysreflexia my first thought should be that it may be a blocked catheter. In these cases I now follow this procedure:

1. empty my leg bag and monitor whether it is refilling
2. start monitoring my blood pressure
3. If the leg bag is not filling, the dysreflexia is worsening, and my blood pressure climbing; I conclude its a blocked catheter
4. When my blood pressure gets to 140 or so I put on a GTN patch
5. I get organised so that I can disconnect the catheter from the leg bag. This requires my blood pressure machine to keep an eye on that, some hand sanitiser, a catheter syringe, a night bag, and a hand towel or proper towel.
6. Once I have all those bits and pieces, I then get on the bed and disconnect the leg bag from the catheter and insert the tip of the catheter syringe into the tube of the catheter. I use my mouth to pull up the syringe plunger. I draw 30 or 40 or 50 mls of urine into the catheter syringe. I then look at the contents of the catheter syringe. There is usually a big lump of mucus floating in the urine in the syringe, which confirms that was the problem. This mucus was blocking the catheter.
7. I then get ready to reconnect the leg bag and catheter. This can be a messy process because there will be a lot of urine coming out of the catheter whilst I’m trying to do it so I need lots of towels. I also need to connect the leg bag to a night bag because there may well be too much urine for the leg bag to contain.
8. With the towels and night bag in place, I disconnect the catheter syringe and reconnect the catheter and the leg bag making sure that the leg bag tap is shut so that I can monitor how much urine comes out. Once the urine has stopped flowing into the leg bag, or the leg bag is full, I open the tap on the leg bag and let that flow into the night bag. There could be anywhere between 500 mls and a litre, it depends how full my bladder is.
9. Then I check my blood pressure. If it’s down below 130 I take off the GTN patch. That is the problem is sorted and I get dressed and get back up and get on with my day.
10. Sometimes I will take it as a sign that I then need to organise to get my catheter changed as well over the next few days.

Thankfully, the regular blocked catheter stopped after 2018 and was not not common for a long time.

Unfortunately it has reappeared more recently.

Mostly the above procedure deals with it. Unfortunately for me, I got caught out in September 2022. My catheter was only partially blocked. So when I emptied my leg bag it continued to fill partially so I thought the dysreflexia wasn’t from a blocked catheter so I did not try to unblock it. My dyslexia got worse and worse, and I didn’t know what it was. I had to call ambulance because my blood pressure was so high, but by then it was too late andI had a stroke which had a major impact on me. My sensation in my left hand has been further reduced. Although I have managed to get back to being independent, I’m not as good as I was. I’m worse at everything.