Wednesday, May 18, 2016

Infection, IPF, and Transplants

Preventing infection is a very important part of life after a lung transplant. The immunosuppressing medications that we are on make developing an infection very easy, and once we do have an infection, it can get serious quickly.  Then there is the fact that infections can damage our new lungs. Avoiding infection becomes a way of life for the successful lung transplant recipient.

Avoiding infection is just as important for the Pulmonary Fibrosis patient.  Infection can cause an exacerbation (rapid respiratory decline)  in patients with IPF.  There is also the issue that if you do have IPF (Idiopathic Pulmonary Fibrosis), then your lungs are compromised even on the best of days. When you add the complications of an infection, you are working with a recipe for major issues.

For example: Let's say that someone has been living with IPF for awhile and their Forced Vital Capacity (FVC-basically lung capacity) is 55%, and their DLCO (basically the ability of the lungs to transfer oxygen to the blood) is 50%.  On the best of days, our example patient is having a hard time breathing.  Walking will cause blood oxygen saturation to drop and will most likely require an increase in supplemental oxygen.  If the day happens to be more humid than regular, or is an air pollution warning day, or sometimes even if a weather front is coming in, Getting air becomes even more difficult. But our friendly IPF'r still gets around, might still even go to work most days. Now imagine if our friend with IPF gets ill, maybe a flu or upper respiratory infection.  He has a bit of a fever, feels pretty lousy, and maybe coughs up some goop.  Next thing you know the infection moves down into the lungs and pneumonia develops.  Pneumonia can be bacterial, viral or fungal in nature and all cause fluid build up and inflammation in/of the air sacks in the lungs.   Guess what... this inflammation and liquid build up reduce lung capacity and the ability of the lungs to transfer oxygen to the blood, making a difficult situation for the IPF patient even worse.  If our friendly IPF'r started out with an FVC of 55%, pneumonia can easily knock that down into the 30's.  Hospital time for sure.

Pneumonia can also cause more permanent damage to the lungs or be the instigator of an exacerbation.  These are obviously issues that a PF patient would very much like to avoid.

I notice quite a few people in the pulmonary fibrosis forums getting a virus and not identifying that they are sick early.  Early identification is the key to quick resolution.

If you have IPF, you need to pay attention to your body.  Your body will let you know when it is starting to fight an infection, trust it when you think things might be a little bit off.

It is sometimes hard to tell if you are becoming ill when you have an ILD.  Being exhausted is common and one of the side effects of low oxygen levels is muscle soreness and other 'flu like symptoms'.  You don't know if you are getting sick, just having a bad cough day, or might have just overdone it a bit.

One thing that we do after a lung transplant to identify issues early is take our vital signs twice/day.  If I knew then what I know now, I would have started taking my temperature at least once daily at the same time each day.  Tracking your temperature daily, either in the evening or in the morning, will give you a good idea of what is normal for you.  Your temperature may start trending up even before you start to feel ill.

Another thing you can do is keep an eye on the goop that you may be coughing up.  If you normally cough up mucus, keep an eye out for any change in color or consistency of what you are producing.  Changes could indicate an issue.

Changes in oxygen requirements can also be an indication of infection.  If you usually are fairly stable with 4 lpm while walking, and you've had to increase your O2 a bit over the past couple of days, there may be an issue.

You know your body better than anyone, if you think you are in the early stages of an infection, take action.

I had a deal with my primary care physician.  He understood the seriousness of my disease and the potential results of an infection.  If I called him with issues that were getting into my lungs, he called in a script for antibiotics.  Office visit came when there was an opening, but I had my antibiotics and could start addressing the infection early.

Now I do understand that antibiotics are not the answer in every case, and that antibiotics are over prescribed to the general population.  Well... we are not the general population. In the grand scheme of things, and extra cycle of antibiotics is not going to make much of a difference to us.  Antibiotics do hurt our gut bugs and I have written a post to address that issue. So please don't worry about the antibiotics, they are the least of our issues.

Of course, taking steps to avoid an infection is better than taking any medicine to cure one.

Hand sanitization is very important for us.  Wash hands often and use hand sanitizer when out in public.  Use the sanitizing wipes that grocery stores are offering for shopping carts, and have your own handy for when they are out.  Something that I saw the other day that makes sense and I don't know why I didn't think about it earlier, use the produce plastic bags as a glove when picking up meat packages or produce that people have been picking through.

Shop during the off hours so there are fewer people around, especially during cold and flu season.

Let friends and family know how important it is for you to avoid infection and ask that they stay away if ill.

Get your pneumonia and flu vaccine, don't get live vaccines.  You might want to avoid people who have had a live vaccine for a couple of weeks.  The inhaled flu vaccine is a live vaccine, the shot is not.

Wear a dust mask when working in the yard.  Excess dust can cause irritation which can be a vector for infection.

Ask visitors to your home to either wash hands or use hand sanitizer.

There are lots more things you can do to avoid infection.  We don't want to live in a bubble, but we also don't want to get sick.  We have to acknowledge the risk/reward and make our decisions based on what really is best.  I'll never deny a child a hug and really wouldn't expect that of anyone.

Take care of you, You deserve it.

The CDC notes that Most Sepsis Cases Start Outside a Hospital, and offers ideas on how to prevent infection.


  1. Good advice for anyone with a chronic illness. We have to do the same for my husband who is on a vent.