Lung Infection

Tricia had a sinus infection last week which is now in her lungs.  She has been on antibiotics since the beginning of the week, but she woke up this morning with a fever for the first time.  The CAMPATH she received a few months ago seems to have slowed or stopped the progression of the rejection, but the damage has been done, and she still has no immune system, so this lung infection could be very dangerous for her.

It has been a very rough year for Tricia so far.  This time last year she weighed nearly 50 pounds more than she weighs today and was feeling as healthy as she had in many years.  Her weight has not been as low as it is today since she was still in grade school, and her breathing numbers are approaching what they were before her transplant. 

We have been back and forth to Duke about a dozen times since the end of the spring, and we are both feeling the effects of spending all of our "free time" on the road and in the hospital.  So far, Tricia has not needed O2, but with the winter approaching that may change soon.  She had a procedure to place a feeding tube (her third in her life, but first since her transplant) last week which she is utilizing at night while she sleeps for some extra calories.

Her medical team tells us that, as long as she remains "stable" she will not need to be placed on the transplant list, but in the meantime, she is doing as much as she can with testing and physical therapy to be prepared when the time comes to be listed.

Needless to say, we appreciate your prayers right now.

Nate

Re-Transplant

We got word a few weeks ago that Tricia's medical team is moving forward with a plan to get Tricia back on the transplant list for a second double lung transplant.  We are waiting for the word from her team to know what the timeline is, so we really don't have much to tell you other than that.  We are still praying that the CAMPATH will work and reverse this rejection, and would appreciate your continued prayers about this as well.

Nate

July 13 Update

Nothing much new to share with you.  Tricia is feeling about the same, about every other day is a "good" or "bad" day.  On the good days, she is able to get out of the house and spend some time with friends and family, on the bad days she spends a lot of time in bed.  Our friends and family have been a huge help, spending time with the kids so I can keep as "normal" a work schedule as possible, providing meals and just spending time with Tricia.

We are blessed.

Nate

Bad Report

We were back at Duke yesterday, and the report was not good.  If the CAMPATH is working, her Pulmonary Function Tests should be showing improvement and her weight should be stabilized if not increasing.  But, her PFTs and weight have both dropped since our last visit a few weeks ago.  In addition, she has developed a sinus infection, which will be incredibly dangerous if it is not dealt with quickly.

Tricia needs things to turn around very soon and very quickly.

Nate

Friday Update from Tricia

Feeling at my weakest now. But I need to be reminded of the grace in my life & of God's goodness. Thankful for this lesson from the Jesus Calling, "Thank Me for the very things that are troubling you. You are tempted to indulge in just a little complaining about My treatment of you. The best protection against this indulgence is thanksgiving. It is impossible to thank Me and curse Me at the same time...your thankful words, prayed in faith, will eventually make a difference in your heart. Thankfulness awakens you to My Presence, which overshadows all your problems."

Day Five

We were told that often the effects of the CAMPATH do not present themselves until day 5-7.  Tricia felt great for the first four days after her treatment...better than she has felt in several weeks.  She woke up on day five with a lot of fatigue, the same on day six.

Recovery from CAMPATH is unpredictable.  Some people recover within about six weeks, while others take over a year to recover.  We are not sure if Tricia will feel fatigued every day like this until she recovers, or if she will have ups and downs.

Thank you for your continued prayer.

Nate

CAMPATH Report

Tricia received her CAMPATH treatment on Friday.  We were at the hospital for most of the day.  She became sick about halfway through, so they slowed the med down a bit and she made it through the rest without any major problems.

We drove home that evening, and by the time we arrived home she was experiencing some flu-like symptoms, but by this morning was feeling much better.

We took it easy today, and she'll be doing the same for the next several days until we figure out how this is going to affect her.  Her medications have radically changed, including new meds and new doses of old meds.

Gwyneth and Tricia at the Duke Gardens on Sunday.

We would appreciate your prayer as I head back to work tomorrow and we learn how to balance things...this will be our first real week of summer with the kids out of school and all of us at home, so it should be interesting, especially if Tricia experiences any kind of fatigue.  Thankfully, we have amazing family to help us.

Nate

CAMPATH Tomorrow

Hey friends.

Tricia has had two good days since being discharged, but we need your prayers for Tricia tomorrow as she begins the difficult CAMPATH treatment.

If you are on Twitter and/or Facebook, please use #prayersforpattysue on Twitter and Facebook on Friday at 11am EST. Post link to the blog as well if you can. cfhusband.blogspot.com/

Thank you!

Nate

Discharged

Tricia was discharged from the hospital yesterday afternoon.  She has been placed on several new meds to help maintain her "health" and to help rid her body of the C Diff.  As long as she is healthy enough, she will be receiving the CAMPATH this Friday morning around 11am at Duke.  We are staying with some awesome friends until then, and if everything goes well with the CAMPATH treatment, we will be home by Friday evening.

Specifically, please pray that the C Diff is gone by Friday and that there are no other infections in her body before or after.  Any infection could be life-threatening with the CAMPATH.

As it has been explained to us, CAMPATH is a type of chemotherapy that attacks the same cells that AIDS attacks, so being treated with CAMPATH is very similar to having AIDS.  Tricia's immune system will be shot for a long time, even up to a year, which means she will be a huge risk to become sick from any number of other illnesses.  She will be wearing a mask out in public and will be avoiding anywhere and anybody that could make her sick.  Also, CAMPATH can cause severe fatigue...this was Tricia's biggest issue with her cancer treatment 4 years ago.

The goal with the CAMPATH treatment is that the rejection will be stopped, that her PFT's will improve, and that she will be able to regain some of her lost body weight.  We have been told though, before things get better, they more than likely will get worse.

Our life is about to drastically change.  We would appreciate your prayers for Tricia's safety over the next several months.  The slightest infection or illness could quickly lead to very bad things.  Also, your prayers for me as I relearn how to balance my life around Tricia's health needs.  For our extended family as they provide us with support and help, especially in caring for Gwyneth.

Nate

Good Day

Tricia had a good day on Monday.  Tests showed that her CO2 is normal, which means she doesn't have to sleep with a CPap machine at night.  She also does not have a sinus infection, which she thought she had.  It was also thought that she might have ulcers in her esophagus, which she does not.

However, her doctors cannot decide yet how to treat her rejection.  She does have a GI bacteria called C Diff, which could cause some major issues if she receives any med that reduces her immune system.  They are all having a meeting this morning to make a decision, and we would appreciate prayers for wisdom.

Nate

Rejection is Back

Tricia is back in the hospital, and the doctors say things look "very bad".  She has been having trouble breathing the past week, so much so that we had to cut our time with family short in NJ and fly her down to Duke on Saturday.  The doctors believe her rejection is back, in the form of something called BOS.  She is set to receive a medication called CAMPATH, which is a chemo drug that will wipe her immune system out for up to a year.  But, she has a sinus infection that must be cleared up before the CAMPATH can begin.

I drove the kids home on Saturday, and Gwyneth and I are packing the car right now to drive to Duke.  Tricia desperately needs your prayers.  Her PFTs are down in the 20's, which is just a little higher that when she received her transplant, and her weight is actually lower than her transplant weight.  She is in a very precarious situation.

Please, pass this along to anyone you know.  I will be blogging as much as possible, but if you'd like to receive more updates, you can also follow me on Twitter.

Thank you.

Nate

GREAT NEWS!

Got a call this morning from Duke...Tricia's rejection is GONE! Thank you God! And, thank YOU for praying for Tricia!!!

She'll be tested again in a few weeks, but it appears she is out of the woods with this.

Nate

Duke Today - Retesting

At Duke today, testing again for rejection. PRAYING for GREAT NEWS!!!

Nate

Rejection

We received the very bad news at the end of last week that Tricia has grade 2 acute and chronic rejection. Just short of four years (April 2 is her fourth transplantiversary). As I've told you in the past, the two big killers for transplant recipients are infection and rejection. Most likely, the rejection is a direct result of this pneumonia/RSV infection she has been fighting for nearly two months now.

The horrible thing about rejection is that nobody knows a whole lot about it. Despite years of research, we still don't know exactly how, when and why rejection happens, which means fighting it is a bit of a guessing game.

Tricia has been put on some very strong meds and steroids to try and reverse the rejection. We would desperately appreciate your prayers right now. We are asking God for another miracle. If the rejection cannot be reversed, Tricia will be in very serious danger.

You can read more about this on Tricia's Blog.

Thank you,

Nate