Winter must be cold for those with no warm memories….
A quote from one of my favorite classics movies - An affair to Remember. Well I can also tell you that winter is cold for those with vascular problems, though that doesn’t have quite the same ring to it. This week saw a sharp drop in the temperature with it going down to -5°, I love the cold weather, the frosty mornings, the cold clear days, the prospect of snow, however winter doesn’t love me back. Anyone with a vascular condition will tell you this is the worst time of year. See, my blood vessels like to shrink away from the cold weather, this causes an increase in the number of spasms I have, not only in my heart but also in the rest of my body and especially playing havoc with the Raynaud’s. My husband and I went for a 15 minute walk the other day with our little dog, the temperature wasn’t even 0° yet my hands were blue and white from lack of blood flow. By the end of winter last year I had what can only be described as a collection of superficial frostbite blisters on both my feet. The bright side of this is I get to wrap up like Nanook of the North in fur lined winter coats, big jumpers (hiding how much chocolate I have eaten) and snuggly winter slippers.
The three hospital appointments this week went well, despite them being on a very special birthday of my long suffering husband. The orthopedic appointment was as expected and just a check up on my hip. The cardio appointment went well in the sense that the echo showed no damage to my heart and I have another set of drugs to try, but this still leaves us feeling frustrated as there is nothing we can do to mitigate the risks, therefore unless something amazing happens with this new drug we are still in the same position. The implantable Cardioverter Defibrillator is not an option yet, for this to be an option one has to have already been resuscitated from a life threatening arrhythmia or the heart stopping. So back to fingers crossed that my husband is around when it happens to be able to resuscitate me. We also discussed the possibility of Ehlers Danlos as suggested by the on call cardiologist last time I was in CCU and I am being referred to a geneticist. The pain management appointment however went better and even though the stellate ganglion block didn’t work we can still look at the option of a spinal cord stimulator. So I am being referred to a specialist center in London to move forward with that option, hopefully after I have recovered from the left shoulder surgery and before the right.
There is a huge element of frustration and certainly feels like it is one step forward and two steps back, hopefully the clinical geneticist will be able to shed some light on the underlying condition. Which will be good and then we can figure out if there is any surgery that I will have to have before the spinal cord stimulator is put in place. It does feel like I plan my life around which part of me is going to break next. So there it is, next year looks set to bring at least three pretty major operations, however next week I currently have no hospital appointments booked so maybe I can get a little work on my PhD done. I did manage to make up for the three hospital appointments on my husbands birthday, by surprising him with a meal out with about 22 of our friends.