Because you asked for it…

Today is the day Jody has been dreaming of for the last four months!  Why, you ask?  I’ll tell you… if you keep reading.  Many of you have noticed that I’ve taken a break from blogging and I’ve been increasingly questioned about this.  I’m touched that so many of you enjoy reading my posts and take interest in knowing how Jody is progressing in his transplant journey.  In this post I’ll do my best to give you an update on how things are going, but I warn you, it’s likely to be a long one.

Since transplant Jody has needed a daily intravenous (IV) infusion of a powerful anti-viral medication (Ganciclovir).  In the hospital this drug had special connectors on it to prevent the nurses from touching the medication.  At home the drug came packaged in about three layers of bags, we were given gloves to wear when handling it, and gowns to wear (I guess) when administering it, as well as a special box to dispose of it.  Jody needed to take this drug because he tested negative for CMV (Cytomegalovirus), and his donor tested positive.  We had been warned pre-transplant that this is a common occurrence as many of us have been infected, unknowingly, with the CM virus.  To help you better understand, here’s a brief explanation of the virus from the Mayo Clinic:

“Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy.”

Anti-viral medication, handled like a chemo drug.

It amazes me that so many CFer’s test negative for this virus because it seems they so easily catch everything else. Regardless, because Jody was so immunocompromised fresh out of transplant and his team did not want him to get the CM virus, he had to take this IV infusion for three months, stopping mid-December.  At that point he converted to a pill form which won’t necessarily prevent him from getting it like the IV did.  It is likely that he will contract this virus at some point in time, as most people do, so he is tested routinely for the virus so it can be caught and treated early if and when he does get it.  Jody is no longer on IV’s but he does still have his Hickman catheter in his chest which he flushes daily to maintain patency.

In December our family enjoyed a simple and quiet Christmas at home, just the four of us.  One thing that was missing this year was a 30 foot oxygen line, getting stepped on and yanked beneath the presents and wrapping paper. It’s absence was welcomed.

In January we celebrated the arrival of the new year with hope that it will be one of healing and change; healing from the last three years of our lives and change as our lives become (ideally) a little less dictated by disease and sickness.  For two years, and especially this past year, we have felt held back and it’s great to feel those reins being loosened.

Jody is now four months post double-lung transplant and since my last post he has continued to improve.  He is still participating in pulmonary rehab three days a week, and his lung function is still climbing.  It’s incredible, and crazy and wonderful!  I wouldn’t doubt Jody will soon hit 100% lung function!  His breathing has never been better!

Jody’s anti-rejection medications come with many side effects and we are still working to manage them.  His blood pressure, which had been high for months following transplant, and was unchanged by an anti-hypertensive drug, is now much lower after the addition of a second blood pressure medication.  The steroid he is on is being tapered down toward the maintain dose he will take for life.  Each time his dose is lowered his blood sugar levels improve.  It is possible that he will be one of those few people who will not be (medication induced) diabetic for life.  We hope that once he reaches his maintenance dose of Prednisone he will be able to stop checking his blood sugar and injecting himself with insulin.  How great would that be?!

Jody seems to be very sensitive to his Tacrolimus, one of the anti-rejection drugs.  His desired blood Tarco level is between 12-14.  This is the range where the drug is most therapeutic for him.  His levels seem to be jumping all over the place, going low at 11 or high at 16.  His dose keeps changing and we have yet to find the perfect fit that keeps him steadily in his desired range.  It’s odd that even on the same dose his numbers fluctuate so much.  This drug is hard on the kidneys and Jody’s kidney function is definitely showing signs of impact from it (and other) medication, especially when his Tacro levels are elevated.  This is a little worrisome to me, a once nephrology nurse, especially knowing that it’s not uncommon for lung transplant patients to eventually need a kidney transplant as well.  Jody’s kidneys have taken a beating through years of potent antibiotics, toxic levels of drugs, and other necessary medications, known to be taxing on these hard-working organs.  Obviously we pray healing and protection over Jody’s kidneys.

Overall things are going really well.  Jody is breathing independently and enjoying life… cautiously… after all, it is still cold & flu season.  This month he even got to enjoy a fun ‘guys’ weekend away with some friends, something that would have been near impossible a few short months ago.  His new lungs are AWESOME and we remember with gratitude, the person/family who gave them to him.

As I mentioned in the beginning, today is the day Jody has talked about for the past four months.  Today is the day he got his feeding tube taken out!!!  He has hated that thing since the day it went in.  It was put in out of necessity, he hadn’t been allowed to eat for over a week.  Actually, he probably only ate a week and a half out of the five weeks he was in the hospital.  I’m glad for the nutrition this tube provided him during that time, but since coming home, and being given the okay to eat, the tube hasn’t been used (with the exception of daily flushing to clear the tube).  At discharge Jody weighed 100 lbs, today he is 124.  Thank you to the many of you who brought us delicious meals, you played a part in this much needed weight gain.

You might be wondering why Jody’s feeding tube has stayed in this long if it hasn’t been used for the last three months.  Steroids impair healing and because Jody was on such a high dose, his feeding tube hole might not have closed had they taken it out three months ago.  Picture him taking a drink and it immediately coming out his stomach (we’ve seen videos of this).  Each month the doctors have lowered his steroid dose and he is finally at a level where they feel his tube can be pulled without complications.  This is great news because the tube has caused Jody great discomfort.  It is now gone, leaving Jody with yet another scar, proof of all he’s endured on this journey.

Jody’s has now been approved for monthly clinic visits.  It’s so great to be spending less time at Hopkins.  Sometimes he still has appointments there for other reasons, like today, but it’s great to have his transplant appointments less frequently.  For the past year (or more) we’ve been going to Hopkins at least monthly, often even more frequently then that, so I can hardly imagine what it will be like when Jody’s appointments become even more spaced out.  To put Cystic Fibrosis and transplant on the back burner of our lives again seems dreamy.

I warned you this might be a long post.  I’ll end by asking for your continued prayers for protection over Jody during this tough cold and flu season.  Ironically the girls and I have gotten colds (we have them now) but we’ve managed to keep them from Jody (so far).  Our family has avoided the stomach bug and flu that has been spreading like wildfire.  We’ve been warned about how any of these might impact Jody, and would prefer to avoid them (and another hospitalization) altogether.

Thanks again for reading and for your continued care and concern for Jody.  On Saturday he will be celebrating his 43rd birthday… out of the hospital, breathing great and healthy.  One couldn’t ask for much more than that!

Tags: cystic fibrosis, Immunosuppressants