CF Clinic: An Inside Look

24 May

CF Clinic: An Inside LookDo you remember the last time you had a doctor’s appointment?  I (and hopefully you too) have been blessed with good health, and can go years without seeing a doctor.  This however, is not the case for those with Cystic Fibrosis, who are typically seen every three months or less.  Yesterday Jody had his routine CF check-up.  When I was planning for this visit I decided to take my camera along and snap some pictures throughout the appointment.  Here is your inside look at what happens during a clinic visit.

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Yesterday’s appointment was a good one.  Jody’s weight is stable, his lung function is slightly improved, his labwork (done prior to the appointment) looked good, and overall, he’s feeling better than he has in a while.  He also continues to do pulmonary rehab 2-3 times a week.  We praise God for this good report and hope for many more to come!

Are You Aware?

5 May

Do you remember the first time you learned about Cystic Fibrosis?  It has been my experience that unless you work in healthcare or have a personal connection to the disease (most likely through a friend, family member, or acquaintance), the words “Cystic Fibrosis” have little or no meaning at all.  This needs to change!  The month of May is Cystic Fibrosis Awareness Month.  Consider these statistics from the CF Foundation website:

  • 30,000 children and adults have CF in the United States.
  • More than 10 million Americans (1 in 31) are symptomless carriers of the defective CF gene but do not have the disease (you could be one of them).
  • About 1,000 new cases of Cystic Fibrosis are diagnosed each year.
  • The predicted median age of survival for a person with CF is in the late 30s.
  • There is no cure for this disease.

Since 1955, the Cystic Fibrosis Foundation (CFF) has been the driving force behind the pursuit of a cure.  This foundation has been crucial in advancing an understanding of what was once a little known disease, creating treatments and standards of care, as well as fighting for a cure.  The CFF invests aggressively in drug development research.  We personally are looking forward to a new drug that just received FDA approval and will soon be available for patient use.  This drug will significantly reduce the time it takes for Jody to do his treatments each day.

Here is what you can do to increase awareness:

  • Talk about CF in your social networks (i.e., Facebook, Twitter, Google+, etc.).
  • “Like” the Cystic Fibrosis Foundation on Facebook for the latest news on what’s happening in the CF community.
  • Take some time this month to educate someone about Cystic Fibrosis (and if it’s easier for you, share this post with them).
  • Participate in a “Great Strides” fundraiser walk (thank you to the friends and family we know who are already doing this).
  • Donate here to the CFF in honor of Jody or someone else you know who is fighting against CF.

Finally, I’d like to share this short award-winning video, “Adding Tomorrows.”  This video gives you a small glimpse into the lives of those with CF and the importance of spreading the word so that one day we can say Cystic Fibrosis is a disease of the past!

One day CF will stand for Cure Found!

Practical Ways to Support Someone in the Hospital

13 Apr

Illness is hard!  Hospitalizations are stressful!  Whether a hospitalization is the result of a one-time episode of sickness, or frequently as the result of a chronic illness, they are always difficult.  Having experienced this in our family, I have learned some things along the way; things I wish I had known before now, things I wish I would have done differently to help others battling illness.  Almost all of us will either experience time in a hospital or know someone who is or does at some point in our lives.  The intent of this blog post is to give you ideas of practical ways you can support the people in your life who are walking through sickness.

1.  Encouragement – Acknowledge the tough time they are experiencing, and let them know you care.  This can be done through cards, emails, phone calls, texts, and visits.  This really does make a difference, so don’t hesitate to send repeated words of encouragement.

2.  Prayer – An illness/hospitalization affects the whole family, so pray for everyone involved, and let them know you’re doing so.  Instead of simply saying, “I’m praying for you,” let them know how you are praying specifically.  Here is an example from an email I received the last time my husband was in the hospital, “I’ve been praying for you a lot, hoping that you can find God’s peace in the midst of the storm.”  It’s easier to believe you are being lifted up in prayer when people tell you specifically how they are praying.

3.  Provide Meals – Meal planning can be a daunting task when things are well, so as you can imagine, it becomes a real burden when a loved one is sick and/or hospitalized.  Providing meals allows the family to focus their energy on more important tasks.  Please note that it is unnecessary to bring a fancy three course meal; a simple main dish is blessing enough.

4.  Acts of Service – Think of practical things you can do that will lighten their load.  We have had friends shovel the snow off our driveway in the winter, and mow our lawn in the summer.  This may have seemed a small task for them, but it was a huge blessing for us.  Once, while my husband was in the hospital, we even had a friend call to say she wanted to drop off a “few” things from the grocery store.  When I got home this is what I found (and this picture doesn’t even show the food in the fridge and freezer).

5.  Be the Initiator – Forgo the natural tendency to say, “If you need anything, let me know.”  While well intended, this statement is not overly helpful.  It is very hard to call someone and say, “Will you bring me a meal?  Will you mow my grass?  Will you watch my children?  Etc…”  Instead, offer a way you are able to help.  Examples include specific dates you would like to drop off a meal, or days you are free to help with childcare.

6.  Practical Gifts – Aside from the obvious cost of medical expenses, a hospitalization is not cheap.  Typically it involves a lot of driving back and forth (and therefore multiple tanks of gas, particularly when a distance is involved).  There are the costs of parking for days on end, meals for the non-hospitalized visiting family member(s), and in my husband’s hospital, there is a daily fee for the use of the room phone and TV.  If you are in a position to do so, consider giving a practical gift such as snacks for the bedside, a card for the caregiver with $5 that says, “You’re next (hospital) meal is on me,” a gas gift card, and/or any other creative idea you can think up.  Gifts do not need to be extravagant to say that you care.

7.  Fun Gifts – Lying in bed (or sitting at the bedside) day after day can get quite boring.  I was once really excited to receive a Taste of Home magazine and my husband has been given woodworking and home renovation magazines as well.  Crossword puzzles are another example of fun gifts.  One friend of ours often gives us crafts for our kids to do at home.  This gives them something fun to do while their Daddy is hospitalized, and keeps them occupied for whoever is watching them.  Consider this gift for your friends with children, and especially for children you know who are in the hospital.

8.  Don’t forget – A hospitalization places a lot of stress on a family.  At times it can feel like ones world is being turned upside down while everyone else keeps on living their normal “happy” life.  While life cannot (and should not) stop because you have a friend who is sick, don’t forget about the hard time they are experiencing.  Continue to encourage them, even when you don’t get a response.  Remember, they have a lot on their plate, and are probably being inundated with phone calls and messages.  Responding to each of those can be time consuming, but I can assure you from personal experience, your messages will be listened to, read, and appreciated.

I hope this post has been helpful in giving you tips on how to support people you know going through a hospitalization.  My husband and I are so thankful for the friends and family in our lives that have, and continue to, stand beside us, support us, and encourage us during periods of illness.  The support of people who care makes all the difference in the world.

Disclaimer: The opinions in this post are mine and may not be the same as those of others experiencing illness and/or hospitalizations.

Discharged

23 Mar

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.

A Good Day

20 Mar

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.

IICU "Bathroom"

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.

A Step Back

19 Mar

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.

Progressing

18 Mar

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.

Update

16 Mar

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.

Post Embolization Update

15 Mar

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.

Admitted

13 Mar

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.