It has been a while, 11 days in hospital getting used to my newest best buddy. I have been diagnosed with multi-facet Pulmonary Arterial Hypertension. There is no fix, so I am a palliative patient. Bothered me a lot -- to me palliative has always meant end of life treatments .. and not restorative. However, it was explained to me that palliative is not end of life - it simply means that the medical profession has no cure for the issue at hand and that the treatments are there to make my life as best as it can be along with some reasonable Quality of Life/QoL.
Ok .. well that is much easier ...... So when I think about it, in reality I have been a palliative patient for over 20 years -- I can do that standing on my head .. no problem cause I have a fantastic Caring Tree.
I have my family - Emilie, the kids, my Mom and Em's parents and her siblings. I have a fantastic medical support team from Drs. Dow, Winkler, Telfer, LIghtfoot, Smythe and now Drs. Docherty and Kemp. Can't forget all the nurses and other medical professionals that are doing their best to help. And, I have all my wonderful friends and mates here on Farmallcub.com. Each branch of my Caring Tree contributes greatly to my well being and in no small way to keeping me alive.
So, I wanted to thank you all, everyone on my Caring Tree for all the prayers, the best wishes, the notes on Facebook, the PM's, emails and cards to show how much they/you all care.
Now an update on what is going on. I am on SQ Remodulin. I have a pair of small insulin style IV pumps that pump the Remodulin via tubing to a Cleo button Catheter embedded in my abdomen. These catheters hopefully will stay embedded for up to 1 month before a site change if needed. I need weekly tubing/pump/clip changes as well as cartridge changes 2-3 times per week at the current dosage levels. Over the past 12 days or so, they have been increasing my dosage by 0.002 nanograms (I think that is what it is). I started at 0.020 and am now at 0.028. We were doing the increases daily but now that I am home it will be BIW .. twice per week. Em has been trained and actually has done it all right from the initial Cleo insertion to the changes and the dosing. Wow, she is simply awesome. Em is also training Sabrina and Kristina as backup. I need to be familiar but seeing as my vision is not so hot these days... it is only in an emergency if Em or the girls are not immediately available.
So, once again, thank you all for your prayers and good wishes. They have been felt and they are truly appreciated. I am fortunate to have to many wonderful folks in my corner. Couldn't do it with out all of my Caring Tree -- and that means you all
I do apologize for not being all that active, but I am very tired all the time. Still getting used to the drugs and of course the condition. I will be on as often as I can .. mindless stuff occupies my time at the moment, it isn't as tiring. As soon as I am well enough, I will be back on a much more regular basis as I try to recover sufficiently so I can start playing with me toys in the spring. Any snow plowing this year with Ellie is pretty much a not happenin event