Feeding Tubes and ER visit

Hi all.

 

Another fun filled week is over :-)

 

It really is nice here but it's not CA and neither of us is used to all this rain!  It absolutely poured Wednesday, Thursday and Friday and then yesterday was beautiful.  Go figure.

 

It was another good week until today.  I went to rehab and on Wednesday we had transplant school to learn about Feeding tubes.  This is one of the "sensitive" areas with Amy and Lee.  Amy called Lee the morning of the class and told him he needed to listen closely and take notes!  Amy has decided that if she has to choose between the feeding tube (GJ tube) and insulin shots, she'll take the shots!  I believe the whole thought of this grosses her out :-)

Here are some pics and an explanation of the GJ tube...

At least 80 percent of all lung transplant patients end up with a GJ tube.  The primary reason is that we don't want to reflux into the brand new lungs.  I learned today that when my lungs are transplanted they attach the new trachea to my old trachea.  When that happens, my swallowing reflexes will be different.  Apparently I won't have a gag reflex any more so it will be very difficult to tell if I have inhaled food or liquid...  They also want to see if, when I swallow, I keep the food in my stomach or if it comes back up into the esophagus  and lungs.  That isn't good.  So...most people have a feeding tube for at least a while. 

Below is a close up of the tube.  It has three branches:  The gastric (G) opening;  The (J) something and the Balloon opening.  All meds go into the G opening which sends stuff directly to the stomach.  All food stuff goes into the J opening which sends stuff directly to the small intestine.  The Balloon opening creates a small balloon in the tubing after it is inserted so that the tube doesn't easily pull out.

The tube is surgically inserted in my abdomen right over my stomach.  The long tube goes into my stomach.  It has inner, smaller tubes.  The first (outer) layer is the balloon layer.  This layer is only long enough to reach the inside of my abdominal wall where the little balloon will be blown up to hold it in place. Yes, someone asked if the balloon will be deflated upon removal of the tube and the answer, pleasingly, is yes it will. 

From the abdominal wall into the stomach there is a two-layer tube and the out layer is now the gastric, or stomach layer with holes that will allow "stuff" - mostly medicine - to filter directly into the stomach to be consumed by all those acids and other good things - it's sort of like a cylindrical drainer.

From the stomach on into the small intestine is now just the one tube that is connected to the "J" opening.  It too has little holes for the "food" (and I use that term loosely!!!) to filter into the small intestine. The food has to be dripped VERY slowly into the tube because the small intestine can not break it down like the stomach does. Lots of food equals lots of poop! Sounds fun so far!!!

 

This is Lee showing where the tube is intserted into the stomach.  It has a small ring type cover that "screws" on to help protect the hole that is made in my abdomen.  It usually doesn't get infected and crusty so not to worry!

These tubes have stuff going into them so, like any tubing, they could get clogged.  To eliminate that, the lines need to be flushed six times a day (sort of like a fuel line in a car).  To flush them, caretaker takes a giant syringe (shown below) and fills up a certain amount of water (warm - not cold) and shoots the water into the line to flush it out.  We need to do this on the G and the J openings.  Below is a pic of Lee practicing.Oh, I forgot to mention...these lines have caps on them and when they are not being filled, they need to be capped or have the line kinked.  The nurse said that was to make sure that my stomach contents didn't come spewing out of the tube (stand back!).

I am making light of this but I know it's really necessary and it really doesn't look as hard as it seems.  I know that between the three of us, it will be fine!

Now for today's fun...it really started Friday night.  I was getting ready for bed and noticed that my cheeks were really red.  I thought it was unusual but who cares when you are really tired.

I got up Saturday morning and noticed that I had a rash on my chest and upper back.  It didn't itch so I went about my business.  Saturday night I noticed that my face was swollen and I still had the rash.  It didn't itch and I could swallow fine so off to bed.

Well, Sunday morning (today) I woke up and my eye was almost swollen shut and my face and neck were all swollen.  Lee provided the comic relief my telling me that:

• I had chipmunk cheeks
• I had a pig nose
• I had a wart hog neck
• I had squinty eyes

All in all, I was quite a pretty picture.  Oh darn, i should have taken a pic of that look!  So, after I finished making the burp cloths and bibs that are due to Emma Jane's Children's Store tomorrow, I called the transplant coordinator and explained what was happening.

Short story...off to the ER for evaluation.  It seems that I may have developed an allergic reaction to the antibiotic I was taking.  They said it might be due to the rituximab I'm taking to kill my antibodies -- it lowers my immune system and goofs things up.  They pumped me full of IV benedryl, IV something else, and IV steroids.  It made me sleepy, dizzy and buff (love those steroids :-)

We sure got to the ER at the right time.   There was only one person ahead of me and we got in within a half hour.  The nurse said that the "after church crowd" would be arriving soon.  Sure enough.  When we left around 5:30 the waiting room had more people in it.  If you've ever been to the ER at UC Davis Med Center then I can say that Duke doesn't even come close to the number of people waiting!

Any way, the drugs reduced the swelling (it's coming back now but they said to expect that) and got rid of a lot of the redness.  I need to take new medicine for the next couple of weeks.  The docs said that this will NOT have an impact on transplant.  I'm glad about that because I was pretty concerned that it might.

That's it for last week. This week I have another go around of the chemo drug for the antibodies (rituximbab) on Wednesday and I think that's it.  I'll write again soon.

Love to all,

Lee, Wendy and Missy

It's November now...

Well, we survived our first month here in NC. This is a pic of us after a week of rehab...yes we know we look a little ragged :-)

 It really is beautiful here right now.  The trees are just gorgeous.  I always thought Sacramento had a lot of trees but this place is amazing!  Here's a pic of a road that we take on the way to rehab...


There are so many trees that you can't even see on the other side of the trees.  It's like this on the freeways and lots of the roads.  The different colors of the trees are so cool.  They really do have the fall colors.

This next pic is of the tree across from our apartment.

It's not a very good picture but the tree almost glows when the sun hits it.  Very cool.

Missy loves the grass and the trees.  She has definitely acclimated to apartment living.  She comes and gets us when she wants to go out and she likes to sit in the recliner and watch the world go by in the apartment complex.  She's become good friends with the apartment's maintenance man, Les.  He's really nice and he stops by to help us do little things that are out of his "norm".  He helped us move the TV the other day and that was a Godsend because we would have waited a long time for me to be able to move it!!!

Les said if w need someone to walk Missy or feed her while I'm at the hospital that Lee can call the office during the day and one of them will run down and take Missy out or give her food or water.  That takes a real burden off of our minds.  We are still looking for a pet sitter and we thought we'd found one but ...wow...she was way too expensive.  We didn't want a live-in nanny - just someone to walk Missy occasionally!!!

To change the subject...rehab was really good this week.  I was able to go every day which I haven't been able to do since week one.  I've got 16 of my 23 days in and I should be able to "graduate" the week after next.  I can really tell that I'm getting stronger.  I still get worn out but my muscles feel a little stronger. 

We had two transplant schools this week.  The first one was "What to expect at transplant".  We had already attended this once but it's one of those classes that you'll get more out of each time.  The other class was about transplant medication.  It was very interesting.  The transplant pharmacist taught the class and we really liked her.  She is the main pharmacist who will follow me and my meds once the transplant takes place.  I'll have to keep in touch with my coordinators for the rest of my life regarding medications.  The pharmacist discussed the medications that we will all most likely be on.  Prograf is the main anti-rejection medication that is prescribed and it's a little tricky getting the dose just right.  Once we are discharged from the hospital we will be having weekly blood tests for the first several months to check our Prograf levels.  They'll keep tweaking the dose until it's just right.  Prograf interacts badly with lots of different meds and that is the main reason we can't take any medication without transplant approval.

Prednisone and Imuran are two other meds to help prevent rejection.  Most of us that are there for a transplant are only too familiar with prednisone (weight gains and mood swings) but the docs do try to reduce the dose to 5 mg a day and that will help.  I've never heard of Imuran but it must be a wicked drug.  If there is a female that is pregnant or might be pregnant, they can't touch the pills or inhale crushed pills!  That means Lee and I will be the ONLY ones to touch those pills!!! 

Next, I'll be taking drugs called Nystatin (prevents thrush); Septra SS (prevent PCP pneumonia); Prilosec (stomach acid); Valcyte (prevent the CMV virus); Multivitamin (no mega vitamins...just the simple ones); Citracel with D Maximum (it's calcium citrate with is easier to absorb); antibiotics for about 3 months; baby aspirin; and pain meds.  I'll also be taking the meds I'm on now except for the inhalers and other breathing meds...those will be gone.  The biggest thing I'll get to eliminate is the oxygen.  That will be so great!!!

The pharmacist also explained that we'll never be able to take Advil, Naprosyn, Orudis, or Celebrex again.  Those are anti-inflammatory drugs and, when combined with the Prograf, will damage your kidneys.  Since I mainly take Tylenol only that shouldn't be too much of a transition for me.

Have a great week-end and Happy Birthday on Saturday to my brother Gordon!

Love,
Lee, Wendy and Missy