Tag Archives: infection-preventing

Dangerously Immunosuppressed

6 Oct

It’s never favorable to hear a doctor (or in this case, transplant coordinator) say, “It’s not good!” when referring to something pertaining to your health.  This was the news Jody received yesterday after his bi-weekly blood work was reviewed by his Hopkins team.  As you probably know, any organ recipient must take medication to lower their immune system and prevent their body from rejecting the donated organ.  Lung transplant recipients require high doses of immunosuppressants and it’s a fine line they walk between their immune system being under or over suppressed; Under puts them at risk for rejection, over puts them at risk for infection/illness.

Jody’s levels have been up and down quite a bit this past year.  When he’s had a few weeks of stable lab work, meaning his anti-rejection medication is in the desired range, and we think they’ve found the perfect dose for him… it randomly goes out the window.  Despite no change in dosage or routine, his levels come back high or low and his meds need to be adjusted again.  While this isn’t ideal and none of us really know why Jody’s body responds this way it hasn’t been a serious concern… until now.

Last weeks blood work once again showed an out-of-the-blue high level of one of his anti-rejection (immunosuppression) drugs.  Unlike before, this caused his infection-fighting white blood cells (WBC’s), a key part to ones immune system, to drop dangerously low.  Jody was sent for STAT labs yesterday since it had been five days from the time of this critical result (it seems the local lab never sent the results to Hopkins… heavy sigh!).  Naturally, after 5+ days of too-high-dosed immunosuppressants, his WBC count dropped even lower and knocked out his immune system, leaving him at very high risk for infection.  So what does this mean?  It means even more diligence in germ prevention.  Jody needs to wear a mask in our house, particularly when around our daughters.  He is to avoid public places.  He can only drink bottled/filtered water (no tap water).  No fresh fruit, vegetables, salads or raw/under-cooked meat.  Finally, LOTS and LOTS of HANDWASHING!

Jody will have more blood work drawn on Thursday.  The doctors want to see if his WBC level will rise on its own now that they’ve stopped and decreased his immune lowering medications.  It is probable that he will need shots of Neupogen, a drug which stimulates white blood cell production, to help boost his levels.  This is a very expensive medication and we’ve been warned that it is often denied by insurance companies because of the cost.  Apparently it’s also not readily available in our area because Johns Hopkins called 10 local pharmacies until they were able to find one who carries the drug.  Jody has been told that a common side effect of Neupogen is bone pain and fatigue.  We should know after Thursday if he will in fact need to start these injections.  In the meantime…

Here are a few ways you can pray for us:

  1. That Jody can avoid an infection while his body is so at risk.
  2. That his body would naturally build more infection-fighting white blood cells.
  3. That our insurance would cover the Neupogen injections should they be warranted.
  4. That Jody’s body would absorb his anti-rejection medications more evenly (less highs and lows).
  5. That his kidneys would recover from the negative impact of the too-high-dosed immunosuppressant.
  6. Good health for myself and our two young daughters.

Thank you for your concern and prayers, they are always appreciated.

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For the Sake of Love & Health

29 Apr

As I begin this post I struggle for words to adequately describe the significance of Jody’s new lungs. When you have watched a love one suffer, increasingly, for any period of time, it hurts deeply. When you live in fear for said loved one’s life, it’s hard and scary. When you bear witness to said persons healing it’s incredibly amazing and freeing. The gift of life, at the expense of another, one that can never be repaid, is so very humbling. The challenge then becomes, how can I (we) honor and protect that gift?

Never again do I want to see Jody struggle for breath, to be separated from him time after time by a hospital for the sick. To live in guilt because I’m not enough and can’t give my all to everyone who needs me (spouse, children, work, etc.). In some ways Jody’s transplant has made me almost more fearful of the future. I will never forget how sick he became two weeks after transplant when he developed aspiration pneumonia and was transferred back into the ICU. I remember sitting at his bedside, thinking to myself, this is what it’s going to be like if he gets a hard-to-treat infection, his new lungs stop working or they go into serious rejection. I’m going to watch him struggle and suffer only this time, the end will come, and I will be left a young widow, and mother. Obviously I don’t know what the future holds and I hope my vision from the hospital is far from the truth but either way, I will do everything in my human power to protect Jody’s gifted lungs and keep him well. I want him around for a VERY long time!

That being said, I thought I would use this post to share with you some of the guidelines we live by. You might remember in the hospital after Jody’s transplant we received a three-ring binder, Jody’s “Owner’s Manuel for life,” they called it. This binder is full of information about post-lung transplant life and holds guidelines for practices which prevent lung infections. Common infections can become very serious and even life-threatening for one with a weakened immune system. The list below was given to us by Jody’s transplant center, Johns Hopkins, and if you are a lung transplant survivor, you probably have similar guidelines given to you by your center, which I encourage you to follow.

Here are the rules of lung transplant by which we live:
•  Wash your hands with soap and water frequently, before eating or drinking, and after using the bathroom.

– This one is kind of a no-brainer.

•  Avoid persons who are not feeling well or who have active infections (cold, flu, skin infections, diarrhea, stomach flu, etc.)

We take this guideline VERY seriously.

•  Wear disposable gloves for any high risk situations.
•  Never change diapers of an infant, and avoid any direct contact with an infant who has received oral polio vaccine in the last six weeks.

Thank goodness we’re out of the diaper stage.

•  Avoid individuals who have been vaccinated with any live virus (chicken pox, measles, mumps, rubella, nasal flu) for at least two weeks.

– So, friends, family, please stay away if this is you or your children.

•  Avoid individuals who did not receive the flu vaccine.

– We’re especially thankful to our family and friends who got the flu shot (even though they preferred not to) so they can continue spending time with us.

•  Wash fresh fruits and vegetables thoroughly and/or peel skin before eating.
•  Be sure that all ground meat, chicken, fish and pork are thoroughly cooked before eating.
•  Never eat sushi.

– Actually, we have an entire paper filled with foods from all food groups that Jody is to avoid, such as common cheeses, salmon, crab, sliced deli meats, store bought salads, well-water, brewed tea, raw honey, and the list goes on and on.

•  Cook eggs until the yoke is solid before eating.
•  Do not eat raw cookie dough or “lick the bowl” when preparing cakes.
•  Use only plastic, dish washable cutting boards.
•  Do not eat at buffets.

– This is due to the risk of bacteria growing on food that has been sitting out for too long, possibly kept at improper temperatures, as well as the risk of infection from people touching the handles of the serving spoons.

•  Avoid large crowds, especially in close quarters indoors (movies, concerts, plays, religious services). If this is not possible, wear a mask, and wash your hands frequently.

– We are church-going people so this one is challenging for us. We did stay home during most of the cold/flu season this year, especially with Jody being so freshly transplanted. My concern is actually less about Jody (he can wear a mask and wash his hands), and more about our young daughters picking up something in the over-crowded classrooms, and bringing it home. In fact, our first Sunday back with the girls that is exactly what happened, much to my dismay. I’d like to add that if I’m sitting beside you at church and you see my sanitize my hands immediately after shaking your hands, don’t take it personal, it’s not that I think you might be germy (or maybe I do), I’m just trying to keep my family healthy.

•  Be aware of people around you – If someone seated near you is coughing or sneezing – get up quietly and MOVE! These precautions are especially important during flu season (October thru March).

– Sometimes I think I’m a little too aware of the people around me. I can pick up on someone coughing from across a room. I cringe when I see people coughing into their hands or blowing their nose and not washing their hands or using hand sanitizer afterwards. I can envision their germs spreading onto everything they touch afterwards.

•  You should never participate in gardening or digging in the dirt (fungus and mold live in the soil and grass).

– This is a hard one for Jody since he enjoys working in the yard and even went to vo-tech for landscaping. I, on the other hand, don’t enjoy yard work. So if you drive past our house and see lots of weeds growing, you’ll know why.

•  NEVER empty kitty litter or clean the cat litter box.
•  Avoid kittens at all times. Adult cats may present a lower risk of giving you an infection but can also be a problem.

– Good thing we’re not cat people.

•  Avoid all birds and their droppings.
•  No traveling/flying in an airplane for at least one year following transplant.
•  When flying in an airplane you must wear a mask and keep the air vent closed.
•  When outside in the sun, wear protective clothing, broad brimmed hat, sunglasses, sunscreen and lip balm. The best times to be outside are early morning and late afternoon. Transplant meds make the skin more sensitive to the suns rays, resulting in high risk for skin and lip cancers. You must see a dermatologist yearly to watch for changes in your skin.
•  Anti-rejection medications are time sensitive and must be taken twice a day (every 12 hours) FOR LIFE!
•  Every day (twice a day) you must monitor and record your weight, blood pressure, heart rate, temperature, home lung function, and blood glucose levels. Bring these with you to all clinic visits for review.

– I created a spreadsheet for Jody to record this information (I didn’t like the one that was provided to us by the clinic). If you are post-lung transplant feel free to download this document for your personal use if you find it helpful.  Lung Transplant Log

By now you’re probably getting a picture of how intense the rules are following a lung transplant. These things apply to Jody for the rest of his life and believe it or not, the above list is not all-inclusive, we continue to learn of new things that we need to watch out for or avoid altogether. I could probably write another blog post on how we actually put all of this into practice and what we do to keep Jody healthy, especially with young children in the home.  I will say that Jody always carries a mask with him and we have hand sanitizer nearby at all times. Obviously we do not enjoy being so diligent about avoiding infections and I often day dream about what it would be like to not be so consumed with avoiding and fighting germs. To not worry every time we go to someone’s house that the hand towel in their bathroom is one their entire family (including children) have been rubbing their hands and mouths on for a week. To not freak out internally when my kids are playing with another child who is coughing. I can hardly imagine what it would be like to have a cold and not worry about it putting a member of my family in the hospital. I remember when Jody’s CF doctors were beginning to talk about transplant (because he kept getting sick and dropping his lung function), I told one of them, “I think this entire thing is going to make me a germ-a-phobe.” His response was, “That’s okay!”

I imagine there are people around us who might not understand and think us extreme. Perhaps they’re tired of hearing us say that we can’t do something because of Jody’s transplant. Those people have probably never lived in a hospital or were faced with the real possibility of losing the love of their life. Once you’ve faced that, you never want to experience it again. I don’t ever want to see Jody, oxygen saturation dropping into the 50’s, gasping for air, barely able to move, out of his mind with hallucinations, and/or on a ventilator. The truth of the matter is that while I daydream of being “normal” I’m happy to be my germ-crazed self because it means that I have a reason to be this way. If Jody was not living, I could be “normal” and much less fearful of even the common cold, but he is worth every germ-fighting, infection-preventing routine we practice (and even the few gray hairs that I’ve acquired along the way).

* I apologize to all the email subscribers who I confused by accidentally (and prematurely) hitting the “publish” button while writing this post.  Oops!

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