Today was another exciting day in lock up. I was NPO (no food or drink) as of 8pm last night because of the 2 episodes of hemoptysis (lung bleed/coughing up blood) I had yesterday afternoon and evening to prepare for an embolization.
An embolization is when they go through the groin up to the bronchi and basically cauterize the places it is bleeding from. They use dye and X-ray in IR (interventional radiology) to do the procedure. After the procedure I had to lay flat for 2 hours. That was no fun because I had to pee.
I finally managed a nap after the procedure, of course with multiple people waking me up for various things like; vitals, breathing treatment, medicine, etc. I am very sore where they went in through the groin and my chest is also sore.
I am doing my breathing treatment right now and guess what……??????
I just coughed up more blood. I coughed up about a tablespoon before I started my treatment and this one so far is about half of a tablespoon. I’m hoping it is left over and not new but it is bright red. If it continues then that may mean I will need to go for an embolization on the left side. I’m not looking forward to that of that’s the case because I am really sore from the one today.
I have talked about it before but I am going to mention it again. There are certain things in a journey of CF that seem like milestones, and not the good kind. For instance:
- First PICC line (long term IV in your arm)
- First hospital stay (lock up, club med, the hole or whatever endearing term you use)
- First round of IV antibiotics
- First hospital stay alone (meaning your not a kid anymore and you are there by yourself most of the time)
- First Port (in the chest or arm)
- First bronchoscopy
- First need for oxygen outside of the hospital and then 24/7 at home
- First time on the ventilator (vent)
- First embolization
- First bowel obstruction or any bowel/intestine problem
- First talk of CFRD (CF related diabetes)
Those are all pretty significant things in a persons journey with CF. I’m sure there are more but those are the ones that come to my mind.
I hope I don’t have to update about another embolization tomorrow.
Until next time…
CF Happens 
Sweetie, dont think im not thinking of you- i am and i read your posts. Its just i too am in rare form thrse days, struggling with a lot of pancreatic stenting in my disasterous highly scarred ductwork.
I so wish they could just hurry up and fix us. And i pray that daily.
Its so amazing that the children are that grown now. My how it does fly by eh?
Please write back and say howdy… I could use your funny wit right about now and maybe we could do sime catching up ok. So many great wishes for you hon… Just SO MANY. Aunt Carolyn lol
Ps. I so can really sympathize with the ALL ALONE thing… If john missed any more work, he will lose his job… And now brenda and her hubby help me as they moved right back from nyc, to help me, and they live by both duke and chapel hill. But their jobs have also been very lenient in the past, but NO MORE TIME OFF… So i fend for myself, just grateful they care for me so wonderfully while i stay endless times at their home. And i will even insist that i take myself to ole Club Med by way of an UBER or a taxi, if i am having to obtain a ride during my latenight attacks, as it is to sleep deprive these 3 workaholic family members OR drive myself (but thatd mean no meds for hrs and hrs before i can legally drive, or to pay for a ride…
And if i drive myself… And they give me meds in the er and then DISCHARGE ME… OR if they admit me, EITHER WAY, when i am released, SOMEONE STILL HAS TO COME PICK ME AND MY VEHICKE UP FRIM THE HOSLITALS PKG GARAGE!!! Oh the life we are forced to live. And its really bad when they expect you to prove that someone will indeed be picking you up, and that you wont be doing any driving BECAUSE IF YOU CANNOT- THEY REFUSE TO OFFER ANY PAIN RELIEF AT ALL.
But i wont bother my family except for the retrival of my car upon DC… Simply to spare them their much needed sleep… Altho i end up suffering horrifically because of these moronic drs incompetance in properly treating this disease with even the MOST BASIC STANDARD of care…(iv flushing of the panky, Being NPO, and a PCA Pain Pump)
But i do so get lonely …and id love for my family to accompany me… And to have their support in relaying my massive medical history to someone who only had 3 days training on the pancreas in med school
…plus these docs are super mean most often, tired,… Grouchy!!! and are stretched to the snapping point… EVEN THO RECORD PROFITS are currently being made in the medical system!!! Still… They cut nurses hrs when we have the greatest need… Especially as we are being invaded by an entire nation south of our border… A nation claiming falsely that theyre some 3rd world country… Lol… Ughhh what a mess and WHAT AN AWFUL AND TERRIBLY UNFORTUNATE TIME TO BE CHRONICALLY ILL WITH A RARE, COMPLEX DISEASE, eh??? Docs and nurses and hospitalists are totally overworked, sleep deprived themselves AND only believes that people cause their own pancreas issues and constantly questions (and VERY ABUSIVELY, at that), “if theyre an alcoholic” EVEN IF THE PATIENT IS A 5 yr old!!!!!!!
Which is insanity and stupidity and shows a great lack of study and investigation on their part!!! (Esp when the top panky researchers in this field have blasted the actual facts from the rooftops, & All to no avail… plus we pancreatic patients disease is so very rare and just as complex, making us a huge burden, user of scarce resources and these uneducated er drs treat us PANKIERS like hell anyways, so … But BELIEVE ME: I SO FEEL YOUR PAIN…,,
Just ALWAYS REMEMBER SHANNON… HE will never leave you…AND HE LOVES YOU TOO, HE is always with us,… HE will never forsake us, ….. Us, HIS FAITHFUL CHILDREN!!! So the roafs been pure hell …yes, but there is a reason for our affliction!!! Ive read it in HIS word and I BELIEVE IT.
Like you… Do you know how many people you e helped by sharing?? Im sure its thousands!!! And how else could we share had we not experienced this terrible plight? Right?!!!!!
Well i keep falling asleep and erasing or switching pages and i didnt save a thing lol… So id better go to sleep now. Such big hugs for you and yours honey. Im ALWAYS thinking of you, i love you… Youll always be family!!! But i think you escaped OR dodged a bullet at times ha ha… Like me… Lol
Ok well, hang in there honey. And DEAR FATHER BLESS YOUR CHILD WITH HEALING, PLEASE TOUCH AND LIGHTEN HER LOAD NOW,
DEAR ALL-KNOWING LORD. IN JESUS’ SWEET & LOVING NAME, AMEN
Lovesya, Aunt Carolyn