Well, Hello There! :)

It has been way too long since I've updated and I am so sorry!  I know I should be better with keeping y'all up to date with everything....I feel like I'm constantly apologizing for making y'all wait for so long.

SO, I was discharged from the hospital on Monday, April 10th after my Hohn placement.

The following Saturday (April 15th) I got up and started my day as any other...my stomach felt a little "gooey" but I just chalked it up to extra drainage from my feeding tube.  Ezra began digging on my bed, and he has a bad habit of getting trash and taking it to my bed to eat it.  I chased him off and decided I'd get dressed and then figure out what he was after.  WELL, I went to get dressed and realized what he was after.....I was missing something very important!  My feeding tube had fallen out sometime during the night, and my stoma (hole for the tube in my tummy) was nearly closed.  We called my home health nurse, and she came out to the house, but couldn't get any of the size tubes in that she had.  So, it was off to the ER....AGAIN!  Only this time, it was my feeding tube.  I discovered that the reason it came out was because the balloon that holds it in had popped.  Anyway, when we got there, the doctor was able to fit a 10F size folly catheter (smaller than IV tubing!) in the stoma to hold it open, and admitted me into the hospital so they could give me fluids since all I could have other than formula was popsicles, and they hoped to replace it on Sunday.  Around noon or a little later on Sunday, they ended up putting me to sleep, dilating (stretching) the stoma, and getting in an 18F size GJ feeding tube like I had before.  After waking up and recovering from the anesthesia, they let me go home a little later on Sunday (April 16th).

I took a shower the next day (April 17th) and ended up getting my Hohn dressing wet, so my sister changed the dressing and discovered that one of my stitches was out.  I called radiology to see if the skin would already be adhered to the Hohn after 10 days or if I needed to get another stitch.  She was very adamant that I needed to get another stitch because "we do NOT want this line to fall out".  She stitched the one that had fallen out and decided to redo the other stitch because it was nearly out, too.  I'm just so thankful the line didn't fall out!!!  I asked her how long it takes for the skin to adhere to the Hohn and she said everyone is different.  Some have been in months when she removes them and she just has to wiggle it a tiny and it comes right out...others after a day she has to tease the tissue off of it for ages.  So it really just depends, unfortunately.

We got a call from my hematologist at the beginning of the week to inform us that he is very concerned.  My arms are full of clots.  They think my mast cells are rejecting the indwelling lines, causing clots that aren't responding to blood thinners.  I'm at a very high risk of a pulmonary embolism (blood clot in the lung) which can be fatal.  Thankfully, it seems my mast cells aren't mad about my Hohn (not yet at least).  I'm really hoping the mast cells leave this line alone!!  I'm running on VERY few options right now.  I tried vitamin D last week and have done fine with it.  Not really noticing any improvements from it, but don't plan to stop it seeing as how my level was 6!  Their next step is to try Sutent, a drug in the same family as Gleevec to see if it'll work better for me than Gleevec.  I think right now we're grabbing at straws trying to find something that will help me get off the pump and get rid of the indwelling line.  Both my local hematologist and my mast cell specialist are extremely concerned with the clot situation.  As things stand right now, I would rather stay on the pump, live happily, and possibly die from a clot than to stop the pump, be miserable suffering, and possibly die from a reaction!  But that decision won't come unless/until my Hohn becomes a problem.  Let's just pray the Hohn doesn't develop problems!!!!!

Yesterday, I had an anesthesiology appointment for the endoscopy and colonoscopy.  Coincidentally, I got the same anesthesiologist who I had for my feeding tube, and he just put in to use my safe protocol and to follow the same recipe... he made sure nothing had changed since the tube incident and then I was good to go!  Was thankful it wasn't the normal 2 hour long anesthesia appointment repeating everything!

I start my colonoscopy prep tomorrow.  NOT looking forward to that!  We got permission from my doctor to pretreat before starting it to hopefully avoid reactions.  At least the flavor packet is separate, so I don't have to have that extra stuff in it.  After all....my feeding tube doesn't have tastebuds! ;)

I have to be at the hospital at 10:30 Monday morning for the endoscopy and colonoscopy.  They're checking to see if I have some bleeding somewhere in my GI system that is causing me to be anemic. Crazy to have stubborn clots AND anemia at the same time!

Last night, I finally finished my life's story and awareness video.  I know I made From Rollerblades To A Wheelchair a while back, but this one is more detailed and put together much better. :)  So, please watch and learn about these rare diseases.....and feel free to share anywhere and everywhere to spread awareness!  Here's the link... https://www.youtube.com/watch?v=bMQHTdQrSg8

Thank you so much for praying for me...I certainly need it! :)

Allison

Surviving ;)

Hey!

     I made it through the procedure and now have a Hohn catheter in my neck.  I took a little longer to wake up and I'm still a bit groggy, but I'm safe....and very sore.

Still knocked out from sedation after the Hohn placement with my
precious Ezra snuggled up to me.

 

A view of the Hohn while still knocked out.

I am gaining range of motion back as the time goes by though!  They have me off of the heparin drip and back on my regular blood thinner.  The Hohn is flushing amazingly well, however doesn't give blood return at the moment.  I've had good PICCs that didn't at first due to the inflammation from the trauma of the placement so we are REALLY hoping that is the case with the Hohn!

Smiles after waking up.

My precious Ezra :)

I'm still on IV antibiotics for the cellulitis.  They are planning to finish out the 5 days so they plan to keep me until Monday.  My arm is still very swollen, but hopefully it will clear up!

A look at my right arm today...
still swollen, bruised, and a tad red.

Well, I'm off to rest some more...gotta get my beauty sleep! ;)
Allison

Catching Up....

My swollen arm where the PICC wasn't in a
vein, causing the fluid to go directly into my arm.

I am so sorry for not keeping you updated!  After my PICC line in my left arm fell out on Friday, they placed another PICC in my right arm.  They couldn't get it advanced due to scar tissue in the vein from all the clots I've had so they left it really super short.  I ended up in the emergency room on Saturday because my arm was swelling a ton and was very painful.  They discovered that the PICC was not in any vascular structure and was infiltrating (my infusion was filling my arm because it wasn't flowing into a vein).  I was admitted so I could have an IV while waiting on a new PICC.  They placed a new PICC in my right arm on Sunday morning and I went home that afternoon.

My arm on Wednesday morning.

I started having pretty severe pain in my shoulder area on Monday and by that night it was extreme, my PICC site was leaking a bit, and I was drawing a weird liquid out of my PICC.  I really didn't want to go to the ER so I opted to contact the after hours line at my hematologist's office.  Well, of course they told me to go so I ended up at the ER at 2:00am on Tuesday.  They did an x-ray and ultrasound and found a small clot on the end of the PICC.  They did heparin flushes through it and sent me home to contact my doctor when they opened.  We got home about 8:00am and called my hematologist.  They wanted me to do the heparin flushes once a week and hope it got better.  Later that day I was in excruciating pain and it was unbearable to even flush the line.  It took me at least 15 minutes to collect the courage to give myself the meds I needed all the while I was whaling in pain.  I woke up on Wednesday morning with quite a bit of swelling and a lot more drainage from the site.

My arm once I reached the ER and they
changed the dressing.  VERY swollen!

 We contacted the hematologist again and he decided to admit me for a heparin drip, possibly try a different blood thinner, and try to save the PICC line or find a better long term solution for access.  Right before I headed to the hospital, I sat down to give myself some benadryl and as I did the prep flush my bandage became soaking wet.  The saline was coming out as fast as it was going in.  I then noticed that my arm was very red from the PICC site up to the top of my shoulder.  We got to the hospital and they evaluated the situation.  They watched as I flushed the line to see how fast it was coming out onto the bandage, called my hematologist to discuss the situation, and then the doctor said it looked as though I had some cellulitis in addition to the other issues.

What happens when you have stubborn veins...
You get an IV in the inside of the wrist and the
edge of the hand!

Just chilling with all my infusions!

  SO, they finally got me admitted.  They put two IVs in - one for my benadryl pump and antibiotic (both lines joined at the base of the tubing to run together) and the other for the heparin drip.

They took me up to radiology to get the PICC exchanged only the PA said they needed to do a new placement with that vein already being blocked off by the clot.  We discussed the possibility of putting a Hohn catheter in my neck, Hickman in my chest, or try for one of the open veins in my right arm.  The decision ended up being for her to try to get the PICC in the arm, but if she ran into issues and couldn't get it to advance, we would go for the Hohn in the neck.  WELL, she tried her best to get a PICC in where it was supposed to go, but all my veins are obstructed at my shoulder and beyond so she had to leave this one short as well.  She put this one in just so we would have some IV access until tomorrow (Friday) when they place the Hohn in my neck.  I will be under anesthesia for the procedure and I've been warned that it isn't the most comfortable thing in the world to have in your neck, but right now everyone (including me) is desperate.  The PICC she placed was flowing good and even had blood return when she put it in, but within 2 hours of the placement it stopped giving blood return and one side is extremely sluggish (partially clogged).  I have been asked by several people WHY on earth they are doing the Hohn in the neck instead of the Hickman in the chest because obviously the line in the chest would be more comfortable......SO, I'll go ahead and explain...  The reason they're putting a Hohn in my neck versus a Hickman in my chest is because the cuff (material on the line to make the skin adhere to it) on the Hohn is right at the insertion whereas the Hickman's cuff is farther in.  They want to make sure I tolerate it before they go farther in.  The Hohn will be replaced for a Hickman when it wears out if I tolerate the materials.  With the Hohn they can just pull it if I react whereas the Hickman is harder to remove (incision required) in an emergency.  They are supposed to come get me at 7:30am to take me for the procedure.  I would appreciate your prayers!  My right arm is still quite swollen and red, however the pain has decreased dramatically and the redness has improved some.  Three big things you can pray specifically is that 1.) I tolerate the line and cuff, 2.) this line or the vein its in doesn't clot, and 3.) it works for a more permanent option!!!  Thank you soooooo very much for your prayers!!

Taking Life One Day at a Time.....
                                              Allison