CF Wife

Farewell Hopkins

It’s been 10 days since Jody was admitted to Johns Hopkins, and he is finally home!  The last few days progressed as we had hoped; uneventful.  His nebulizers, physical therapy & chest PT’s were all well tolerated.  There were no more episodes of bleeding.  His pain is gone, and although not perfect, his breathing is better, just like the doctors predicted would happen with time post embolization.  Jody will continue to do another week of IV antibiotics here at home, and will begin pulmonary rehab a few weeks after that.  We have a follow-up appointment in the CF clinic next week.

Once again we want to thank everyone for the support we received.  We enjoy reading your comments and knowing that you are praying for us.  Thank you for the phone calls, visits, meals, help with babysitting, gas gift card, and to those who contributed to our extra special blessing from Victory Church, we don’t even know who you are, but thank you nonetheless.  This support makes going through a difficult time, a little less difficult.  We know that the road ahead of us is going to be hard, and that hospitalizations will most likely become more frequent.  We will need your continued support to help us through those hard times, and we hope you are up for the challenge.

Today was a good day.  Jody’s oxygen saturation is improving, so he spent most of the day off oxygen.  This afternoon he walked around the unit for 10 minutes with physical therapy.  This was his first activity since the bleeding the other day and he tolerated it pretty well.  His oxygen level does drop with activity, but for the most part, he is asymptomatic with it.

This evening Jody was transferred back to a regular room.  I imagine tomorrow they will start his nebulizer treatments and chest PT’s.  He is now off all continuous cardiac and O2 monitors so he is feeling rather free and is looking forward to a “real” shower.  He won’t be missing this less-than-private sink cabinet/bathroom all-in-one in his previous room.  There’s nothing like sitting on the toilet when a doctor walks in.

We’re thankful for a good day, and are hopeful this is a step in the right direction.  Please pray that the increased activities tomorrow will also be well tolerated, and without another episode of bleeding.  Thank you for all the comments, words of encouragement, and prayers, they are all so appreciated.

It seems I spoke too soon on my last blog post.  Early this morning around 1 a.m. Jody began coughing up blood again.  It was a little disheartening since we thought that that was behind us, and something we wouldn’t have to worry about anymore.  After the embolization the CF doctor told us that most patients have a 20% chance of re-bleeding, but in Jody’s case, because of how aggressive they were, he only gave him a 10% chance.  We joke that naturally Jody would fall into that 10% category.  This episode might have been precipitated by all the activity yesterday (nebulizers, chest PT, and the laps around the unit).  Maybe it was too much, too soon.  Since this bleeding, all of that has stopped and Jody remains in the step-down ICU.  They really prefer not to repeat the embolization because of how much was already done, and how much it took out of Jody.

So where do we go from here?  They are considering putting him on medication to thicken his blood.  This decision is complicated by his history of blood clots in the lungs for which the treatment is blood thinners (which obviously he can’t be on right now).  Nothing has been started yet, I think they are waiting to see if he has any more bleeding.  And of course, there is the possibility of another embolization should the bleeding continue.  I hope that everything Jody went through, that horrible pain, was not in vain, and that the bleeding will stop permanently.

At this point we have no idea how long Jody will be here.  They will “rest” him for a few days (to minimize coughing which causes bleeding), and then will slowly resume those treatments to see how they are tolerated.  Only time will tell.

Thank you for your prayers, Jody seems to have turned that corner.  His pain is finally down to a minimal level, and his breathing has improved.  We are working on weaning his oxygen as tolerated.  Today he went for his first walk with the physical therapist and did seven laps around the unit.  This is quite an improvement considering just a few days ago he could barely walk the five feet from his bed to his bathroom, and even talking & eating were an effort.  Today he also began chest PT’s (the old school kind where a physical therapist physically “pounds” on his chest to break-up the mucous in his lungs to help clear his airways).  The doctors have also restarted all of his nebulizer treatments and he continues on IV antibiotics.  He has not had any active bleeding since the embolization.  Because of all of these improvements, Jody will be moving back to a regular room when one becomes available.  It’s great to see him acting more himself.  Maybe tomorrow he’ll even be up for a game of Skip-Bo.  Thanks again for keeping us in your thoughts and prayers.

This evening Jody was moved from a regular room to an intermediate intensive care room where he can be monitored more closely.  The intense pain post embolization has continued, and Jody’s breathing has become more labored, even on oxygen.  The doctors contribute this to the lungs going through “shock” from the loss of blood flow through the bronchial arteries (which were the vessels they clotted off because of the bleeding).  They anticipate Jody’s breathing will improve as the lungs adjust to their new blood flow.

On a personal note, it’s hard to watch him struggle to breathe, and experience such pain.  It’s my hope that the doctors are correct in their speculation, and that Jody will soon turn a corner.  He is such a trooper, never complaining, and generally positive, but he’s anxious to start feeling better.  Please pray with us that this will happen sooner rather than later.  Thank you.

Last evening Jody had the embolization procedure to plug the bleeding in his lungs.  The picture below is of him before he left to have it done (and of him laughing at me taking yet another picture).

This procedure involved entering the lungs via the femoral artery in the groin, locating the bleeding in the bronchial arteries by injecting dye, and finally injecting the clotting material.  Jody’s bronchial arteries were abnormally enlarged from his CF, so the procedure took quite a bit longer than was expected.  The radiologist explained that in most cases they only need to use three vials of micro beads (the clotting substance), but in Jody’s case they used 11, and decided to stop at that for risk of injecting too much and having it travel to an unwanted area.  The radiologist also said that this was the most he had ever used on a patient (to which Jody and I did a high-five – hey, you gotta keep things lite, right?). Fortunately, the procedure was a success, that’s the good news.

The bad news is that because of how aggressively they treated the area, and because of how much treatment it required, intense pain is to be expected over the next 24-48 hrs as those vessels die off, and it has already begun.  Currently Jody is being treated with oxygen to minimize how hard he has to work to breathe, and oral narcotics for the pain.  The doctors have also offered a PCA (IV pain medication that Jody can release himself by pushing a trigger) if he feels the oral meds are not effective enough.  The plan for now is to monitor him through the weekend and watch and wait for this pain to subside.  Please pray that he can rest comfortable, and for the pain to be minimal.  Additionally, pray that lying in bed, not coughing, and the fact that he is off his nebulizer medications does not cause him to develop a lung infection.  They are treating him with IV antibiotics to prevent this but I know that Jody’s lungs can’t afford another infection so this is a concern of mine.

On a positive note, we have been very happy with the care he has received thus far, and are thankful to be here at Johns Hopkins.

Since last October, Jody has been working to slowly build back his strength.  This past month he was finally able to spend a decent amount of time working in his wood shop without getting fatigued.  He said it felt good to be back at it.  He has been working on a kitchen for a client, including a custom-built kitchen island.  This project has been ongoing since this past summer when he first got sick.  Thankfully, the clients have been more than gracious and patient, always telling Jody to take care of himself first, and for that we are incredibly grateful.  After all this time, this was to be the week Jody completed the job.  On Monday we made the three hour drive to the clients house, and planned to stay until Friday, when everything would be finished, and the clients would finally have their kitchen complete.

The problem with this plan happened Monday night when Jody began coughing up blood.  Fortunately, the bleeding stopped after about 5-10 minutes and Jody made the decision to start work the next day (but not before getting a lecture from me about taking it easy, letting others help him, and not lifting anything heavy that would cause more coughing and/or bleeding).  He made it through the next day (yesterday), without any more “episodes,” until bedtime.  That’s when it happened again.  Still, Jody thought maybe he could do a little more work today, and then head home early this evening (he desperately wanted to finish this job).  But, when he woke up with bleeding this morning I put my foot down, and we started the four hour drive from Troy, PA to John’s Hopkins in Baltimore, MD (against their advice to go to an ER and wait for them to send an ambulance or chopper).  The concern, as we were well aware, was the risk of Jody having an episode of coughing and bleeding, that wouldn’t stop.  This would have become an emergent situation.  Thankfully, and through prayer, this did not happen and we arrived at the ER with Jody in stable condition.

At this point we don’t know how long Jody will be in the hospital.  He will most likely undergo a pulmonary embolization which is a procedure where they go into the lungs, locate the area of bleeding, and plug it.  We appreciate your prayers that this will be done safely, and effectively.  As with previous hospitalizations, Jody always welcomes your phone calls, messages, and words of encouragement.  I know it’s hard for him to have a disease that holds him back when he wants nothing more than to keep going, and going strong.