Made it out for a day and a half...

After much pleading, I was discharged Christmas Eve and got to play Santa for my son the next morning. Then we went up to my parent's house for round two of gifts.

Thursday I woke up feeling horrible yet again. So, here I am, inpatient with multiple clots in the right lung. This is getting really old.

My little man came over to visit today and we colored 4 pics of monster trucks. They look very nice on the wall.

Trying hard to get home. Right now there is very little air moving around the bottom right lobe. Feels like fire ants are hanging out in my lungs. They are doing well with pain control.

Just Get Me Out of Here!

I have no words, your bravery in the face of this is astounding! Prayers going out to you that you can get these issues under control and get to go home to you son.

It has been pretty ridiculous since Aug. My son has the number somewhere in the 70's as days inpatient. I know the Nissin surgery was necessary-relux and aspirating in my sleep was resulting in too many bouts of pneumonia. Especially since I have lung disease anyway. I now know why my pulmonologist and gi dr debated back/forth as to when I was healthy enough to have the surgery.

I just hate it for my little man. I know I've talked about this fact over and over-but I still worry. He cried Thurs when he knew I had a drs appointment. I think he knew that I would be back in the hospital. I've been more open and truthful with him regarding my health fiasco. He's really stepped up and is helping as much as he can. He has such a good heart.

Don't know what my INR is this morning. It's been jumping around between 1.2-1.9. It was 1.5 yesterday. Gotta get to that 2. This whole blood clot/pulmonary embolism has really freaked me out. A friend of mine lost his wife of 3 weeks due to a pe. Again-so lucky the dr decided to run a
a d-dimer test based on a gut feeling. I truly feel like a cat with 9 lives. 2 bouts of fungal sepsis, pseudomonas pneumonia, and now pe's.

Again-I love my pain management dr. He's been checking up on me daily. Still in pain where the clots are located. My lung dr says it's due to tissue death and pleurisy. We are trying really hard not to increase the prednisone. After over a decade and Cushing's, I'm down to 30mg. This seems to be the magic number. 30mg is still pretty high. The goal is to get down to 10mg. Might never happen, but I'm trying.

I don't think of myself as brave or tough. I've been blessed with an awesome son and great family and friends. Without them, I could not do this. My 10yr old-he's tough:)

I sure hope they can get you to the 2 really soon, and can get rid of the clots asap. You're in my prayers.

love and hugs
Loretta

Fingers crossed over here!

That was quite a long road to get you back home, but it's good to see you happier. I'm sorry for the pain, and the fear, that's knuckled up and decided make life even more challenging.

I think it's normal to get scared. What's important is what you do with it. Wishing you a gentle segue into this new year, and here's to things calming down to a more reasonable level. God knows you've earned it, and then some!

Continue being kind to yourself,- it's a precious gift.


M.

Saw my primary dr today. I only ever see him after hospital visits. When I get sick-I go all the way, as you guys all know:)

He walked in and gave me a huge hug. He has 75 days inpatient in his records since mid-August. Surgery, sepsis, fistula, blood clots-it's like a variety pack of fun.

He does not want me on Coumadin. He feels that with my other meds and issues, we would forever be chasing numbers and never get into a sustained therapeutic range. He stepped out to call my pulmonolgist and hematologist but both are out until Monday. He wants to switch to Xarelto. It does not require the blood work or the monitoring of Coumadin. The downside is that it is easier to reverse the affects of Coumadin in an emergency. However, dr feels that is not a good enough reason with all the other medical mess I have going on.

I see my lung dr on Tuesday. Hematologist will call tomorrow to set up an appointment. I'm still trying to get by day to day. Little man has a basketball tourney this weekend. Luckily, it's a home tourney so we'll be home at a reasonable time. Next weekend I have to drive 3 hrs north to MCV(Medical College of Va) to get some special scans done of the TMJ replacements. Something is not "right" but we can't put our finger on it. Dr. who created the joint is in California. The scans will be sent out there and then we'll see what the dr. has to say. Week later I drive 3hrs south to Duke for a round of appointments and infusions. Of course-I also have physical therapy 2-3x a week.

It's just exhausting, and never ending. You guys all get it. On the 14th, my son and I get to have some fun:) We are a hockey house and Santa brought Capitals tixs. One of the ways I've learned to cope is to have events/fun stuff on our family calendar. Whenever I'm inpatient, my son writes our plans on the dry erase board that is in the room. If I have nothing to look forward to, the stays can seem endless. Twice now I've been discharged early in the morning of my son's bday party. VT football games, son's tourneys, plays....anything to take both my mind and my son's mind off illness.

Pain-wise, I'm coping. I'm always going to hurt and it is what it is. Still on the 25mcg Fentanyl every 48hrs and the 8mg of dilaudid. Baclofen and Valium at night to loosen up the jaw muscles. It's just impossible to get ahead of the pain and still be a mom.

We are tough folks.

And again-you guys are awesome, and way to complimentary:) We all have our reasons to get up in the morning. Mine just happens to be loud and smelly:)

You said something quite profound in there...

One is how much you really love your pulmonologist. With that much appreciation, it sounds like you have a great doctor that you trust very much. (That's such a big step!)

You also said you'll wrap your head around this, you always do.

I think you're stronger than you may give yourself credit for sometimes.

Being concerned and being proactive, plus having an awesome doc, you're staying on top of it the best you can. I wish I could give you a ((hug)) just for being as strong and determined as you've been through all of this already!



M.